About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Monday, December 13, 2010

all time low

I really dont know how much more I can take.....I purposely went grocery shopping today without matthew because I couldn't take another food tantrum, I just didnt have it in me. He was home when we got home and I was signing papers for his reshab worker and I asked the boys to put away the groceries.

I had a pretty good inventory in my head of what to be on the lookout for- I knew he would try to sneak the cookies and likely the crackers so I checked the location of those items. He put some of his favorite foods in a cabinet because "he forgot those go in the lockbox" and I found all of those and put them in the lock box.

But I forgot I bought 2 boxes of cereal. I had the box i bought for David, but I forgot I bought LIFE cereal.....it wasn't on my radar. I forgot to look to make sure it was put away. I spent a relaxing night at home watching tv and hanging out. All was good until I headed upstairs to bed and there in plain sight was the LIFE cereal- an opened box right next to Matthew's bed.

This means he was able to find the box, hide it upstairs somewhere I wouldnt find it, and then he was quiet enough about what he was doing so I wouldn't hear him open the box. Had he stayed awake long enough to put the box away, he could have gotten away with it and had the box for days until i noticed an influx of crumbs.

Sure, there were signs, he asked where I was when I came downstairs after putting them to bed- but this is not totally unusual. He went to bed without a fight...also not unheard of. He didnt say goodnight 15 times- strange, but not so strange that it alerted me. He didnt tease Jacob after I tucked them in-this was the most odd, but again, not so odd that I forgot to notice him NOT teasing Jacob.

Seriously, how can he put all of this together and have me not notice? Why does he put so much energy into sneaking a box of cereal upstairs and hiding it?

I know his body must hunger for the food- but he eats more than anyone needs. I know scavenging for food and obsessing about food is common in kids with Fetal alcohol sydnrome...I get it. But I am tired of squeezing all the food I buy into a lock box. I am tired of having to lock up my food. I am tired of not being able to tell the kids to just go get a granola bar. I am tired.......I am simply, plainly tired.

I love him with all my heart. I know that no matter how hard it is to parent Matthew, it has to be that much harder to be Matthew. However, I am tired, and would like 1 day that goes back to when life was easy. When I could trust him and not always think he is up to something. One day when I am proven wrong that his goodness is not for another purpose.....One easy day. One nice note from the teacher that follows with a good day at home.

And to top off all of this....David has started his seizure gag/cough....please make this seizure cycle easy....let the seizure come and go and be a small one. At least this explains David's intensity this weekend and it means that David's seizure will come and he will go back to being stable, but please make it quick. We are going away in 9 days.....I need a peaceful trip, I need to go away feeling somewhat calm so that life is not overwhelming before we get to Disney.

one calm day, really if I can get that, I promise it will be enough....but is there really a way to get 1 whole calm day? maybe I should ask for 1 calm hour.........1 calm minute????

Tuesday, November 23, 2010

David seizure free and ready to conquer the world

David's seizures are complex, hard to identify and at times questionable. I have said to every doctor and I readily maintain- david may or may not have seizures. David may or may not have a disorder that has a name as of right now in the medical community. All I can do is identify the "davidisms" describe them to doctors and hope that some time in the near future we get a diagnosis that identifies what is wrong and maybe a hint towards a cure.

Now that said, I am pretty confident David has seizures- they may not all be visible on his EEG , but as I have recently watched 2 other children as they were having seizures, I am not sure that they could look more Davidlike in their presentation. The far away look, the confused stare, the empty eyes.....these other children looked just like David when he is having a seizure.

Not only that, but currently David is thriving! He is excelling! He is doing amazing things, things I have waited years for! And, low and behold, nothing is happening that I have any medical concerns about. He is not having anything that comes close to looking like a seizure. His brain is calm, his behavior is very well controlled, he appears to be at peace.

He has learned to identify some sight words. He can almost write his whole name. I have received 2 emails from his teacher just to tell me how great he is doing.

he can draw me a picture- complete with sun, grass, clouds and a house. He can "read" me a few books that we have. Today he pointed out the word "to" in a book. He recognized it because of the "t" sound.

This month is amazing. His brain is at peace.

I cannot tell you what David has.....I can only describe what I see.....but for now I can say comfortably that David's brain is quiet.....he is ready for learning....he is loving the experience of learning.....and he is feeling good!

And I am loving every single minute i have watching my guy blossom!!!!

Monday, November 22, 2010

The reality of Fetal Alcohol Syndrome

Fetal Alcohol syndrome is:
1. making excuses to go outside so that you can steal the gum from your mom's car

2. pretending you need to bring a cardboard box to the recycling box so that you can go get a lollipop from the car and then bringing the cardboard box back inside with you because you forgot you were supposed to leave it in the recycling box

3. when your mom asks you about the cardboard box, you rush to quickly bring it outside, and then leave it on the front porch because you still can't remember what you are supposed to do with it

4. breaking a new toy because it won't work and then asking when we can replace it

5. not understanding at the age of 9 that because you broke the new toy you do not get a new toy, that you now have to live with the broken toy

6. taking your brothers hat to school and then trying to figure out what to say when someone realizes you have it.
are you better off lying? telling the truth? You tell the truth, accept that you are in your room for a few minutes and will take the hat again tomorrow because you want it. however you still can't figure out how they knew it wasnt your hat. The hat says JACOB on it, but that still doesnt clue you in.....

7. eating a piece of cake. wanting more cake. knowing that your brother has thrown out his cake. trying like hell to find a way to get your brothers cake. picking up a piece of garbage and announcing that you are throwing it away. being surprised when your mom knows that you are throwing something away so that you can get the cake out of the garbage.

8. knowing your folder for school is lost, and having no idea where it is. You can't remember when you had it last. You can't remember where you saw it. You promise your mom it was lost at home. You make an amazing attempt to look all over the house. The folder is at school. The teacher had the whole class look for the folder at school, she told you it was at school, but you can't remember that she told you this and look for a long time at home. Valiantly looking but in wasted effort because the entire time it is at school, and somewhere lost in your brain you know this.

This was all just today- in the 2 hours we were together, this is how the alcohol that his mom drank 9 years ago impaired matthew's brain. This is how he struggled today. This is a good day for us. Nothing he did hurt anyone. I was able to stay calm.

This is a good day, and yet I am exhausted, sad, and frustrated that this is how he lives his life.

Tuesday, November 2, 2010

needing to connect

So I have sat down to write this blog many times, but havent been able to put the words to paper. Here's to hoping that I blog it tonight and stop thinking it all through!

One of the most stressful things as a mom, and I am sure this is true as a mom of typical kids and kids with special needs, is that you never know how the outside world views you. However as a mom to Matthew, I find myself almost constantly feeling judged. Matthew is either awesomely embraced by the world around him, or is seen as a nudge. I have never heard anyone say that Matthew does not evoke some emotion- either you hang on every word, or you pray for there to be some quiet when Matthew is around.

For those who pray for quiet, I think you can understand why there are days at 9 AM I am already cooked. For those who hang on every word, I am really, really trying to see him through your light. However, life with Matthew is always a double edged sword. Seeing him in the most positive of light means that I am also reinforcing all of his bad habits. He will talk to ANYONE. About ANYTHING. ANYTIME! ANYWHERE!

Do you know how dangerous this is? How troublesome this is? HOw am I to ever teach him the social graces of when we talk to others, when we don't and how to tell the difference when the world is constantly sending him the message that he is adorable?

But in reality, how adorable is he when you are the man standing next to him at the urinal and he is trying to chat you up? With his learning challenges, these are really the 2 options I have.....either teach him to never talk to strangers or essentially tell him he can ALWAYS talk to strangers and this includes the rule that you can't be frustrated when he chats to you as you are next to each other in the restroom.

We went to get blood taken the other day, and I preset him like CRAZY! "You are not to talk to people who are waiting to get their blood taken. You may look at a magazine, or talk to mommy, but the rule is we do not talk to other people in the waiting room."

We enter the lab and 3...2....1.....he immediately comments- hey mom the warts on my arm look better, and don't you know the senior citizen next to him, comments, oh my goodness he is adorable, and it went down hill from there.

How many of us can have wart discussions and be called adorable? For how many of us is commenting on our warts an open door for a 15 minute conversation? For Matthew it was.....and when that person left to get her blood taken, he commented to the next lady that he liked her shirt....a PLAIN WHITE SHIRT! but guess what, it opened the door, she talked to him, and as he plainly pointed out to me, it would be rude not to respond.

No matter how much I tried to remind him of our rule, or how much I tried to dissuade him from these conversations, he learned where each person in the waiting room lived, what schools they went to, where their sons and daughters work and they all know the birthdays of my entire family....and why? basically because Matthew has warts!

Sunday, October 10, 2010

ups and downs of life

What a great day today was! We went to see the band FLAME play at the Carrot Festival- an amazing festival held in honor of carrots and all things orange at a local synagogue, and then we went pumpking picking with some kids from David's class and his teacher!

FLAME is a band made up of musicians who all have Developmental Disabilities! It was really quite incredible- if you had only been listening to the music, you would have no idea that each of the musicians has some form of disability! They were great entertainers, drew a large crowd and sang some fabulous songs!

This is definitely a band I want to learn more about- especially with matthew being as musical as he is, it is amazing to have this group who seems to tour our area a few times each year.

It was also incredible to have the opportunity to hang with David's teacher on a non school day. It was great to see him with the other kids from his school out and about and to watch them interact.....David is actually a pretty quiet kid at school. He spent the day being kind of shy and planful in all of his actions. He was particular as he picked his pumpkin, and loved playing in the sand box.

I am struggling a little watching him with peers. I guess the hard part, and I am sure this is not just as a mom of kids with needs, but it feels like that, is that most of our friends kids have started to make those strong bonds with other kids, and my boys are not the "friends of choice". If we are getting together as families, my boys are liked, but in a group of kids, my boys are essentially "the last ones picked for kickball". They seem to not even be aware, but I am feeling this pretty intensely.

It is hard to watch other kids form friendships and to see your kids really still struggling. On the other hand, I am trying to remind myself that not everyone is super social, and David is likely a quieter, 1 friend at a time kind of kid. So in a large group, he is never going to be the party animal.

It is tough though, how do you teach a child to be a friend? How do you teach him to like what the other 6 year olds like? Am I not providing him with opportunities to watch the "cool shows?" but if he isnt interested in those shows, how do I get him to watch them? He is somewhat aware that his friends are into Star Wars and other action figures because he picked out a few of those things as his halloween costumes, but he didnt know who each figure was, and kept going back to wanting to be Mickey Mouse for Halloween. I would prefer that he be what he WANTS to be, rather than picking a costume that has him "fitting in", but on the other hand, I want him to play, to love light sabers, to play with the little figures his friends carry around, to do the 6 year old boy stuff.

It is hard enough for me that Matthew really does not have a friend to call his own. After all, part of childhood is having friendships. It is going to friends houses, and being together doing boy stuff together, but at this point in time there isnt really a "friend" for Matthew, so I have adjusted to that. But to now watch David get passed by is hard- but I know developmentally he is just getting into playground play, and really has not mastered imaginary play at the level his friends are at, so it is stressful for him to try to play with them.

I watch Jacob at school, and it is just all so easy- he goes between being a doctor to the animals, to making his own book, to cooking in the kitchen and it is all so effortless- it is as it is "supposed to be" He has already had more birthday invitations than David or Matthew, he will have friends, heck, he ALREADY has friends and they are kids he is close to, who look for him as much as he looks for them.

I am sure this will get easier, but I will always wonder, did I not do enough playdates? Did I do something wrong? Do we need more social groups in our life? Is this just as it is? Is it more a "me problem"?

Wednesday, September 22, 2010

Yummyness at Temple

I have to write down the amazing vision that was the Sukkot Service at Beth Emeth tonight because I never, ever want to forget it.

We were 10 minutes late to services, and my plan was to sneak in the back. David was struggling and it just made sense to have easy access to leave if need be. Well, David was in first, and he held his head high, and marched past every single row, right to the very, very front and plopped himself down opened his prayer book, and began to "read".

Now not 2 seconds later did he whisper to me, "this is a long service" and he was ready to leave, but he stayed for the entire 20 minutes and while I am sure he was disruptive to some, what they don't know is:

1. He "read" the book each and every time a page was announced- he "found" the page and looked at it intently.

2. He was in awe at the guitar....waiting for it to be played

3. When they opened the ark, he oooohed at the Torahs and commented- "a family: a mommy, a daddy and a baby" and as if that wasnt amazing enough, as they shut the door to the ark, he said "they didnt read it"....he knows what is in there,.....he is aware enough to know that a Torah is for reading, he has been paying attention all these years.

4. As we left the sanctuary to go to the sukkah, as every other child ogled over the donuts and juice, David was pulling me towards the sukkah- he wanted to go inside, he gingerly touched the fruits hanging in the sukkah- he looked at every decoration, he was at peace in the sukkah.

it was truly the most spiritual moment I have ever had with David, all the years he has been feeling and learning about being Jewish and I had no idea! david is Jewish, and he knows it.....and now I know it to!

my head is spinning

I think there is so much going on, that the only way to do this is boy by boy......

Let's start with the easy one! Jacob is great! he is LOVING his new classroom, totally in love with his teachers, his friends and basically school in general. Cannot get up and out of the house early enough and like a sponge he is just soaking in everything anyone says to him.

David the ups and downs of this week are enough to make me crazy. In the last post he had started stuttering for no reason at all... Well as quickly as the stutter began, the stutter went away. A week ago Wednesday he had a seizure on the bus, was lethargic and pretty non responsive on the bus ride home, got off the bus and was with my mom for 2 hours and was absolutely amazing. Super well behaved, chatted about everything and not one stutter.

He continued like this for almost a week- he was a totally different child.
On Rosh Hashannah we had gone to services, and he had his teacher aide with him and she struggled with him over everything..... Fast forward a week later, when the stutter was gone, it was Yom Kippur and the aide said he was incredible. They looked at books, colored did a variety of activities, all was wonderful.

He was out of control the first day the new sitter was here, really put the sitter to the test, and then the next time the sitter came, after the stutter went away, he was amazing, very easy to care for, very chatty, all was good.

Soccer practice the week he had the stutter he did almost nothing- he kept taking the balls and throwing them into the woods, just could not really do anything, this past week at soccer practice, he did drills for an hour....now certainly, I am not saying that he did drills like everyother 1st grader, and I am not saying he became a soccer star, but if you didn't know he was a child with developmental issues, you might not have guessed how much he struggles. He held it together for an hour, and was proud of himself and did an amazing job/

Today, I called home to check on him and he apparently had been drooling and sleeping on the bus. David doesn't drool. David doesn't sleep on the bus unless something is wrong. The highly impulsive little boy is back. The david who truly can't focus or attend, who cannot follow what is being said but desperately wants to please you...the look in his eye tonight was again one of sadness and exhaustion.....I hate that look...I konw it can go away and I trust that it will, but man was it a great week, the week without the stutter!

For matthew, life is basically just getting back into the routine that is school. This morning he again was able to open the lock box- I thought that he had discovered the code, but he swore to me he hadn't but when i came downstairs the cheezits he had so desperately wanted were open, and the lock box was open as well.

In my frustration, I redid the code, only to spend the day trying to figure out what I had entered as the code- I wasted a total hour of my life tonight determined to figure out what code I had entered....thankfully I figured it out, but seroiusly, why can he crack the code in moments, and I am mentally not sharp enough to remember the 6 digit code I entered?

Friday, September 10, 2010

david update

David's stuttering has continued and on Wednesday I was able to take him to the neurologist.....after rearranging my entire day, having to ask my parents to help with watching Jacob, and basically making a lot of adjustments....guess what the neurologist diagnosed David with......

Wait....hold on....it is a rather impressive diagnosis when you bring a stuttering child in to a neurologist.........

You will truly never, ever believe this, but he diagnosed my child with

A STUTTER!!!

yes folks, you have read that correctly, I called and said my son with seizures is stuttering, the doctor insisted on seeing David and the official diagnosis was that my child is STUTTERING!

The doctor is unsure whether the stutter is a result of a seizure, if it is due to damage from a seizure, or if it is just a new development, and does not feel like more tests are warranted to make this determination. While I am thankful that we do not have to do more tests, my mind is not at all at ease, and I am finding myself worrying constantly about David.

It seems like David's stutter gets worse as the day goes on and he gets tired, and I am sure it is something that will either go away or I will get used to. However, to watch him stop himself from talking is breaking my heart. Everyday there have been 2 or 3 times that he will look at me, want to talk and then just be quiet because the words just won't come out.....for a child who didnt talk until he was over 2 years of age, and who didnt speak in sentences til he was over 3 years of age and then lost almost all langauge at the age of 4, to have him unable to express himself is truly breaking my heart.

In addition, apparently this weird arm flapping and high pitched noise is a tic. He is doing it over the simplest things that excite him- tonight he did it when we bought popsicles. Really, he won't even eat a popsicle, so why did the popsicle excite him enough to make him do this tic? Why do I have to see it? Truly it is breaking my heart.

I just don't know that I can watch my boy struggle to speak and to have his body doing these odd new things......

Monday, September 6, 2010

if I write about it, it can't be a big deal...right?

So for the past week or so I have been noticing David stuttering...it started last weekend, and was just a little stutter.....but on Sunday it was worse to me. It was the beginning of every sentence and a few times he stopped talking and just walked away looking frustrated and sad. Finally on Sunday afternoon I called the doctor- when your child has a neurological issue and something that appears to be brain related starts happening, it is really, really hard not to worry, however, as I try hard to not overreact, it is hard to also stay calm.

How do you judge how many times in a day your child is stuttering? How do you determine if it is getting worse or better?Especially when others who are with your child are not hearing it, how do you know if you are just being overly sensitive and worrying too much?

Tonight we were eating dinner and David was doing great, we were eating and talking and all seemed good. David picked up his corn and all the sudden his arms moved up and down in a jolting way and he let out a little high pitched gasp.....it is nothing....right? how could it be something? no reason to worry? I am sure he is fine......I could almost pass that off as excitement, after all dont we all get oddly excited over corn? That is until we went to Walmart. As we were walking into walmart, David was riding in the cart and suddenly he flapped his arms up and down and did a weird giggle.....again, if nothing else had been happening, I would think nothing of these oddities, but this is now the third time he has done this in a week....

My plan is to call the neurologist in the morning...but what with school starting, and me starting my nursery school and all of the Jewish holidays right now, it is a hard time to worry and to stress, however I am having a very hard time NOT worrying and stressing.....I am sure all is ok... a little medication or something to help him and he iwll be fine.....he has to be fine.....he is starting first grade on Wednesday and there is no time for anything but for David to be fine....maybe if I say it enough times, he will be just fine!

Sunday, August 29, 2010

sometimes it is all just hard

One of the things I think that makes life with my boys hard is that I will not get the opportunity to raise a neurotypical child through all of childhoods phases until Jacob goes through each phase. I am sure that some of what each of my older two kids do is "typical" and often I feel like it is "typical with a side of atypical". What I am constantly trying to do is balance life- I don't want to be too hard on Matthew or David if they truly dont have control of their actions, and then again, I don't want to be too soft on them if I should raise the bar.....

Today was a day that I was full of thinking and trying to figure things out. In a stroke of genius, I decided that I had to do back to school shopping this year at the Outlets. Sure there are stores around here, and sure I could have shopped at them, but I really wanted to hit the outlets, and I really wanted to go with my mom, and of course that meant the 3 boys were coming as well.

As we started out on our drive, I immediately got us lost. I knew that there was a shortcut to the highway and I was bound and determined to find it. However, after senselessly driving around for 20 minutes and basically going in circles, with me having no idea where we were, Matthew quickly announces we are "close to 5 rivers". i would have bet against him. I would have sworn he was wrong, but my mom and I both knew better, and not 2 minutes later what happened- we drove by 5 Rivers....now sadly this is 5 minutes from my house, so we effectively drove 20 minutes to go a total of 5 minutes away....but more importantly, how did he know that is where we were? How did he recognize the roads? If he knows directions this well, why are there so many things he can't do? can he do more than I give him credit for? Am I underselling him? Have I decided that there is more "wrong" with him than there really is? How do I tell?

Then there is David. He did great for the first 40 minutes of the ride, and then he started just being out of control- squirting Jacob's juice box at him, throwing it on the ground, poking at Jacob...and I know...many would say he should stop himself...if only I held him to a higher standard..........
but I believe this is not the case, I can't explain it to you....I can't make it make sense, and I truly hope I am not wrong. God I hope I am not wrong.....

See with David, when life makes sense, he is the quickest to comply. However, if it doesn't make sense, you could do anything you want, and he will not comply....it is as if he can't. So, rather than yell about the juice box, I moved him to the middle seat with me. Then he calmed down, and then we found out that he wanted an orange juice box not apple juice. When my dad packs juices, he usually packs orange juice boxes and so that is what David had expected today. After a few more tough minutes, and convincing him that we would eventually stop for a drink, he and I had a great ride together. Then, we stopped, got him and the other boys a snack and a drink and the remainder of the ride was pretty good.

The same thing happened at the shoe store....actually I guess it happened before the shoe store. See, one of the things we had said we were shopping for was shoes for school. As we left my house, my mom told David to wear sandals but he insisted on wearing flip flops and I figured whatever he wanted on his feet was ok by me. As soon as we got to the outlets, David spotted shoe store after shoe store and quickly insisted that we go get shoes. But rather than talking or getting our attention, he simply took off his sandals and repeatedly threw them insisting he was done with them- he wore the flip flops, but bubbe said they werent good for shopping, so now in his head it was time for new shoes..... Now again, I know....many will think I should just tell him, "now you get no shoes!" and this is where it is hard, because with Matthew that is exactly what I would have done. And with Matthew it would work. With David it would just get more and more and more impossible. You have to think like david to have success with David, or at least that is when I find success.

So, after a few other stops, because I will not immediately just give any of my kids exactly what they want when they are behaving poorly, we finally entered Stride Rite. David quickly found a green shoe box, fell in love and wanted whatever shoe was inside. As I tried to teach him to look for a size 1 he got more and more and more frustrated- this is where his brain seems to break down. The more I tried to show him that I would get him the shoes but we had to get the right size, the more he became unable to hear me and to recognize that I was trying to help him. He became more and more frustrated and began to try to throw his flip flops and knock the boxes off the wall, but as I looked at him, I knew he had no idea what I was doing...to him it was as if I said "come, see ALL the worlds shoes....and YOU cannot have ANY!!!!

It was hot in the shoe store, it was crowded in the shoe store, and it was super hard to be david's mom in the shoe store- trying to be patient, yet having to duck his sandals. Trying to get him to understand I was on his side, I was here to help yet seeing in his eyes that he didnt understand. In my effort to get through to him, I got loud, and he got sad. Then I got sad, and continued to be frustrated. Finally I was able to get him outside where it was just the two of us, and I was able to help him to see that the shoes he wanted would be he is. We just had to find the right size and pay for them and he could wear them.

I can't tell you it got much easier, until finally he got the shoes he wanted on his feet....and man, did he walk with pride and happiness once they were on his feet.....and I spent a good portion of the day wondering....did I do it right? Did I teach him? Are we getting any closer to him understanding patience, waiting, being a good listener? What happens in his brain when he can't hear me? Is he that confused, or is he playing me for a fool? I so wish I could open his head and see what was going on. I so wish I knew in 10 years what he would be like.....for today this is the best I have.....I hope it is one day good enough......

Monday, August 23, 2010

deep breath

OK, I am remembering why I started this blog- to help me on those challenging days. To get on paper, sort of, what the challenges are and to help keep me from hanging onto the stress.......

It has been a while since I blogged, there was a lot of good times, it has really been a great summer, but now we are in the last 2 weeks, summer school is over, and apparently we are going to hit bottom.

I am trying to stay positive. Trying hard to remember this is only a phase, but seriously, I think it may be time for me to consider jumping off the bridge!
Really, how often is one supposed to hear the following before they go crazy?

1." YELLLLLLOOOOOWWWW"- said as we pass almost every traffic light and hope that it turns yellow

2. "The truck has 3 tires" followed by a giddy high pitched scream- to which I am supposed to feign excitement, however it has now been SOOOOOOO many trucks we have seen and I am SO NOT excited by them

3. can I have cookies tonight- this starts at 8 AM and continues throughout the entire day, sure some days it is cookies, and other days it is ice cream, or skittles or some other favorite food- but it really wears on me daily.....I am a large person, I get the importance of food, but it is just simply not THAT important that we have to start talking about it at 8 AM

4. talk about CDTA busses- seriously, they are not that exciting- they are a mode of transportation....a way to get from here to there and back again.....we read the numbers on all of them, evaluate their signage, wonder when we can ride one......

5. "I love you Jacob" or "here I come Jacob" or just basically being in Jacob's face which is quickly followed by a high pitched cry from Jacob- leave HIM ALONE!!! Seriously.....

6. The incessant "I love you", "I love you"....I am sure that he is checking for love, and I hate that and yes at times it does break my heart. BUT, I am a human, with true emotions....I simply cannot be "on" 24/7". and you know what, when you are bothering me ALL THE TIME, it is hard to be patient, and loving and kind, and sweet NONSTOP.... and therefor, saying "I love you" incessantly is SO not helping his cause!

I know that life is changing, I know that school is about to start, I know that this all has a huge impact on Matthew. I know that.....I get it! However, I SIMPLY CAN"T TAKE ANOTHER MINUTE! There, I said it......so, if anyone is interested in a 9 year old boy....rumor has it he is endearing and clever and cute in small doses......I will happily take him back on September 7.......but until then, I think we could both use a break!

Saturday, August 7, 2010

What a wonderful week

My brother was just here with his 2 daughters and his son and we had truly a magical magical time! With a total of six kids- ages 9,8,6,6,3 and 3 we were busy and the volume was loud, but the fun was SUPER FUN!!!

It was fabulous to see my kids truly enjoying their cousins and to sit back and spend some of the time relaxing while the kids played together. It was also fabulous to be able to see each child do what they needed to do to get their needs met.

Two times we went to a playground and David asked to stay with his bubbe and papa where the house would be quiet and the air conditioner would be on. This break from the chaos seemed to be a perfect way for him to rejuvenate and get ready for the chaos to return when everyone got back. The rule for the week that "everyone rides in their own car" was quickly implemented, because putting this many kids in a small space where someone has to focus and react to the world around them was deemed unsafe! In addition the break from each other was beneficial for all of the children!

But FUN was the word of the week! We hiked at Copake falls, spent a few hours swimming in a lake. We saw a baseball game. Ok, we really sampled a variety of foods as those around us watched and played baseball----but there was a few periods of time that the kids watched the ball get hit....and they enjoyed watching the mascot ride around the field on a motorcycle, and trying to catch the frisbees that were thrown out to the crowd during breaks.

We also played in the fountains at SUNY Albany, and spent time at a few local playgrounds!

The growth in all 3 of my boys was apparent- David did the entire hike on his own 2 feet, and was the 3rd person up the mountain- he beat everyone except for Samantha and Cailin. Matthew swamp at the waterfall and had a blast! Jacob and Nathan had a marvelous time simply being together!

It is amazing how much you miss family after they leave! What a fabulous week we had!

Tuesday, July 27, 2010

Musings by Matthew

Tonight I read Matthew's writing assignment and HAVE to share it....if you had asked me could he write like this I would have hemmed and hawed and told you it was unlikely. I feel like this summer there is an avenue to his thoughts that has been opened.

When matthew makes up a song, you see his heart and hear what he thinks. When Matthew writes, you also get the blessing of seeing his heart. He makes me so proud in so many ways, but to have his words in print is INCREDIBLE!

His journal entry on July27, 2010:
I want to be a police officer when I grow up. I will rescooe (rescue- isnt it cute how he spelled it though) people when they need help. Bad guys won't stand a chance aginest me---(again love the spelling error!!)
I want to live in Bethlehem when I grow up. there are lot of shoping stores ( he takes after his bubbe's love of shopping!) When I grow up I will get a dog and take him to town park. I will live close to my mom- (ok, that is the part when I cried) It will be exciding to drive my own car in the town.

Is he a genius or what??? I have said it many times in the past and have to say it again now, I know that all parents are full of pride when their children do things for the first time. However there is an incredible joy that is remarkable when you wait extra long for your child to reach a milestone. I never expected to see his thoughts so organized. I have waited forever to hear him talk about what he wants to be when he grows up. Now I will pray and hope that he won't be a policeman.....however, to know that he has a dream, and sees himself living close to his mommy makes my heart swell with pride and joy!

Sunday, July 25, 2010

strangers part deux

OK, apparently Matthew has now mastered the concept of stranger...but this has led us to 2 new concepts that must be conquered.
1. Not embrassing our mother.
2. That it is ok sometimes for mom to chat with someone, but it is never ok for Matthew to stop a stranger on the street to chat with them.

Idiosincracies are intense to teach to anyone, but subtlety is a fine art that Matthew really needs to pick up on. We were at the grocery store today and while I always grocery shop with 3 in tow, sometimes it is easier than others. Today was a relatively easy day, but after going through 3/4 of the store, I just wanted to get done. We were at the aisle where I was encouraging each of the boys to pick their juice boxes for the week, and Jacob was walking in front of carts and pushing our cart and basically just attempting to be cute, but unfortunately his cute was about to get him or someone else hurt. I must have breathed that sigh of frustration cause one of the other ladies in the store smiled at me and said "you're doing great", I laughed and said something along the lines of "we're almost done....thank god" to which Matthew chimed in "we don't talk to strangers mom!" with exasperation. Which made Jacob chime in "no talking mom". While I rolled my eyes and tried to just get them to wait a minute, the other lady said "you are right boys", and I tried to explain that sometimes moms do chat with each other.....

But no matter how I tried to explain it, or tried to just get them quiet, it was like Matthew could have been smacked in the face with a GIGANTIC HINT and he was never going to catch on......subtlety, the art of communication, the rules of interaction among strangers and friends have to be so delicately taught. I am actually ok with the teaching aspect of all of this, but the public lessons that go along with it are hard....how do you explain these things while interacting with the stranger? Do we just all look down and speak to no one??? Do I just let him chat it up to the world?????

Thank god he is cute and recently has been funny.....but in my next life I will be writing a step by step instruction book of teaching interpersonal relationships for those that don't understand them....actually, it may just be easier to write the book for people who DO understand interpersonal relationships and teach them how to relate to people who don't!

Sunday, July 18, 2010

Stupid brain damage...

I hate losing things...there I said it....I know it makes me angry, but compound something being lost with David truly being unable to remember and I lose my cool. It makes me so angry that his brain fails him. Why is it so hard for him to remember things? Why can he truly at times not just remember? This is likely just another symptom of his seizures and brain issues, but why can't the doctors define it? Why am I supposed to just accept this...I can't just accept it! There has to be a fix.

As I started making dinner the boys had asked if we could go to the pool. I figured once dinner was made, we could go for a little while. After putting the steak in the oven I went to the computer desk and gathered our pool passes, and went to also grab the pool pass for the babysitter. I had our passes and Danielle's pass at the computer last night and multiple times I thought "I should put these away" but I figured since they were all together and I knew where they were it was no big deal. I figured I would put them away later. I also had my library card and David's library card in the same place.

Well as I was gathering things, suddenly there were only 3 pool passes, not 4 and 1 library card, not 2. I immediately asked the boys who had used them. No sooner than the question was out of my mouth did David freeze - I hate the look on his face that he makes- it is like he knows that he has touched the item but for all the tea in China he cannot remember where he put it. So I start asking questions-
did you touch the card- Long awkward pause and finally - yes
did you play with it- yes
where did you play with it- long, long awkward pause and finally- in the play room
where in the play room- starts looking around and answers too quckily- on the floor- HELLO----the entire playroom is FLOOR- and there is no card on the floor....

Now we enter in to the world of the unknown- cause at this point David is willing to say anything that he thinks I want to hear, when in reality- there is nothing I want to hear, except WHERE ARE THE CARDS!!!

We go through a whole host of scenarios- I suggest things he may have done with the card, he greets every suggestion with an affirmative answer.....this is TRULY not HELPFUL. I think I could have suggested he ate the cards and he would have agreed.

Then, when you ask him to look for the card it is like life is too painful- he walks ever so slowly to where he thinks you want him to look and stands and stares.....and the more this goes on, the more my heart breaks, and the angrier I become because it is so unfair- while adults often forget where they put things, and I know a lot of kids are forgetful, with David it isn't just that he is forgetful it is the look on his face, the pain, the acknowledgement that he truly has no idea. He is not playing a game with me. he is not being silly or trying to duck out of being in "trouble". He truly has no idea and is completely lost.

I asked if he had played "library" with the cards, and he agreed he had- to support this idea Jacob made up a whole scenario of how they played library and what the game looked like and what they did-in reality my guess is that they didnt play library at all, but who knows for sure........and truly the library card and the pool pass can each be replaced for $5 so I dont know why I have allowed these 2 items being lost to ruin our entire evening.....but it is a vicious circle of me hating when things get lost and that being compounded with having to watch David painfully become out of touch with life and it is enough to break my heart. I could have sat and cried....which would have been better than tearing the house apart. I could have hugged him forever and that would still not have been long enough...but I was busy being mad and sad at the world. And hating that this is how we ended what was otherwise a perfectly wonderful fabulous weekend. But the reality of life SMACKED hard in my face tonight. I hate it....I want his brain to work. I want him to remember.

Wednesday, July 14, 2010

A post by Matthew

I am so thankful to have hired 2 wonderful babysitters for the 2 older boys this summer. David and Matthew are each so happy and so busy every afternoon. Today David got to go to his favorite place- the book store, but every day has been filled with a variety of activities including swimming in the pool, hanging at home and playing in the sprinkler. I feel like I have solved my dilemna on how to have a happy summer. For the second week in a row, all 3 boys are happy.....Matthew and David are having great afternoons, my mommy guilt is slowly going away...and today when the AC was broken the babysitter was at the house to let the repair guy in.....As a single working mom of 3- it doesnt often get any better than this......

That is, it doesnt get any better until at 10:00 at night you open your 9 year olds writing notebook and you start to cry.....I cannot believe the writing Matthew is doing. He has "optional homework" this summer and it has really made him excited- between that and having a 5th grade teacher as his babysitter, he has been super busy reading and writing.

Here is his post from yesterday.....
"I'm a good piano player. I slide my fingers on the keys. My keyboard it plays music on its own. I play twinkle twinkle little star. My mom bought me the keyboard because it broke. I know that keyboards are expensive."

and here is his post from today- to set the stage- we went to a minor league baseball game last night- we sat in the rain for a while before the game and he watched the players warm up. He asked incessantly about which snacks he could have at the game. Then we saw maybe 10 pitches and the game was called for rain. However, after reading his post today, he apparently took in a LOT more than I thought....
" I saw Bailey at the baseball game yesterday. Bailey is a baseball player. He runs the bases. He hits a home run all the time and Bailey plays catch with the players on his team"

Even if in the moment our activities do not always feel like a success, to read what he writes proves to me that we are on track and that everything we do has meaning and is important!
Thanks Matthew for letting me know how much you love our activities! Thanks Danielle and Heather for loving my boys and giving them such a great summer!

Monday, July 12, 2010

defining a stranger

I guess there really is no way to define the word "stranger". It is a known, or actually I guess, unknown, entity to all of us. If I tell you not to talk to strangers, you know what I am talking about. If I tell the kids at my preschool not to talk to strangers, we could have a chat about what that means, and while there may be slip ups, and reminders would be necessary....we could form a consensus as to who a stranger is.......tonight I learned, finally and exhaustedly, that Matthew lacks, or at least seems to lack, the ability to come to this consensus.

To matthew everyone is friend- that I already knew. However, categorizing people is a true mystery to him. He is talking to everyone that walks, drives, rollerskates, skateboards, or moves by our house in some other fashion. And I don't mean he is just saying hi, he is endearing each of them with some sort of personalized conversation:
"your baby is so cute"
"how old is your dog"
"does your motorcycle go fast"
"what road do you live on"
So given 3.5 seconds, as far as he is concerned he KNOWS them and therefore they are not strangers.

Here is his checklist:
If they know my name they can't be a stranger- they know his name, he tells them as he stops them to chat

If they live in his neighborhood they can't be a stranger-they must live in his neighborhood- duh, he is talking to them outside the house ( yes, I got this Duh complete with eye roll for my stupidity)

If they have a child, or a pet, they can't be a mean stranger- Duh, they have a child or a pet- what stranger do you know that would be allowed to watch a child or a pet?

So now I dare you....you define stranger for me......better yet, define it for him...... He even caught me by saying sometimes I talk to people I don't know- while this is not a habit of mine, I am a rather forgetful adult, and in my job I come in contact with LOTS of people. Often someone will stop me and chat and he will be pestering--what's their name, what's their name, what's their name, till I nearly kill him because I don't know their name. Then he tried to tell me if I don't know their name they must be a stranger.....but OY they are not a stranger.......UGH....I am just forgetful!

The saddest part of all of this is that Jacob is now copying a lot of this behavior from Matthew. The person they stopped today had a bike trailer and in the trailer was what I thought was a baby because Jacob kept telling me, or rather asking me why "it" couldnt walk....

I kept saying it was a baby, babies don't walk. Finally he got fed up with me and said, "It not walk, it leg broke"....to which I wanted to respond...if you knew it couldn't walk cause it had a broken leg, why have we been having this nonsensical conversation and wasted the last 20 minutes of my life...but instead I had to laugh cause of course no one would put a BABY in a bike trailer......DUH

Friday, July 9, 2010

Catching up

What a great few weeks it has been...we had a fabulous week together as a family that ended with an amazing 2 days in Connecticut. The boys are all doing so well- behaviorally things are good, and they are just simply happy. It is the kind of happy that you can only get when you are outside, swimming and enjoying the fresh air. We spent a good solid week swimming and basically just having fun. We celebrated Matthew's 9th birthday with a great day at a fun park- Go carts, bouncey bounces, and more Go carts- the kind of birthday that is made for Matthew.

Then we headed to CT to see my Aunts, Uncles, cousins and the boys Great Grandma. What a great 2 days- it had been a long time since I have seen all 3 of the boys doing this well! David experimented in the swimming pool, Jacob had a blast and matthew loved some 1 on 1 time with his Great Uncles, cousins and basically anyone who would play ball with him.

I had a great time celebrating life and enjoying watching my boys with my Aunts and Uncles. It was great to simply sit back and see their growth.

The most frustrating part of my life is that there is really no rhyme or reason for the boys ups and therefore no rhyme or reason for their downs. So when things are good I just have to sit back and enjoy the ride! The memories that were made watching matthew open his birthday presents, telling the world he was turning 9 and jumping for joy when the reality that he was "that much closer to 16 when he could drive a car" will stay with me forever!

We returned home to the start of summer school and Jacob and I returned to Nursery School camp! The boys both seem very happy to be back into their rhythm of school, and Jacob is loving life as the big man on campus at summer school!

Here's hoping to many more weeks of peace and happiness, and to more memories being created as we swim at the pool and hang with our friends!

Tuesday, June 29, 2010

the high dive

I took a step back today to watch Matthew....to really, really watch him and to see him....openly, with a heart that is open, and eyes that view him as everyone else.....you know what? he is a pretty magical kid. The world unites around him.....I have no idea why, but there is an energy that he gives off.....something that makes him stand apart from all others.

He is the kind of person you want to see succeed. I think a big part of it is that he treats the world with passion. If he meets you on the street right now you find out that his birthday is coming up. You know what our plans are for the week. BUT, he also asks something about YOU. He wants to find something out so that he can forge a quick connection.

For an hour tonight 30 or so people watched him on the high dive. Everyone cheering, offering support- offering an incentive, trying to get him to jump. For an hour, he never jumped. For 30 people, it never mattered.

He climbed up to the high dive and told me "i'm going to do it". After 10 minutes a guard was called over to help him get down.

he climbed up again, and said with conviction, "I'm going to do it", and again after 10 minutes he was helped down.

Finally he climbed up again- this time there were incentives galore- every guard at the pool was watching him. Kids ranging in age from 6-15 were watching him. Families were watching him. I heard more than one parent say, "i know you want to watch, but we have to go , it's getting late" and still they stayed.

The head lifeguard jumped in the pool and spent 15 minutes in the cold water encouraging him......each person at the pool had their own unique form of encouragement.
" it's not hard, just close your eyes"
"just run to the end and fall in"
"keep your eyes on the flag"
"I'll count backwards from 10...9...."

My boy is petrified of the drains. He has been scared of drains in pools on and off for years. The height doesn't bother him. The jump doesn't bother him. He cannot get past an irrational fear of drains. And that is completely ok, because in his own time he will again conquer this fear.

As I worried that people would get annoyed, I had the presence of mind tonight to look around, no one seemed annoyed. Everyone had hope that Matthew would conquer this fear tonight. Everyone hoped we would see him jump....heck, I even hoped we would just see him fall so he could see that there was no reason for fear!

As he left the pool a guard shouted- 'you'll try again tomorrow" and he will....because 30 people believe in him...and one day, he will believe in himself! and he will believe once again that drains are safe!

Sunday, June 27, 2010

in a funk....

ok, I am writing this all out, and then the plan is to GET OVER IT! I am in a funk...not quite sure why, I know that I can worry myself to death, but I also know that in doing that I can also miss lots and lots of good times. So, here it is...all worries in 1 place, and then I am putting them to bed.

Worry #1
We look "too different" to fit in.....In reality, I am sure that I am the only one seeing Matthew as SO different, but man is it smacking me in the face recently....I feel like all he is doing is talking nonstop about nothing...and sometimes it is SO embrassing. Can he ever be quiet? Why has he circled back to an obsession with mufflers? Why is he larger than life?

worry #2-
While David is better than he was a year ago, he just seems "off" to me a lot recently- am I looking too hard at him? is something going on? He is quiet...too quiet for my comfort...he just doesn't look good- and I know no one else will see it...and I konw I am an overworrier, but momtuition tells me something is "off"

worry #3-
I want each of the boys to have 1 good friend. Matthew's birthday is at the end of this week and while there are GREAT family friends for us to celebrate with, and I am ETERNALLY thankfuly for all of them, I will always wish that he had 1 good friend of his own.

worry #4-
I don't feel like we or I am fun to be with recently....life is just so BIG all the time, and so it is my goal to put the big away and just giggle, laugh and have fun...but that is easier said than done...especially when I feel like the incessant talking is making me crazy.
I am in my phase of life is too big for me. The house is overwhelming, I can't get it cleaned up. Each of the boys needs something new- process the SPOA stuff for Matthew, try to find a respite worker, look for someone new for reshab for matthew, focus on Jacob's speech, check on David, and fit in laughing and making memories......

worry #5
everyone these days is talking about extra help for their kids- do we need social groups? what will happen if we don't do 1? Do we need extra school work time? remedial efforts? Can summer just be about fun? Who needs what? How badly is it needed? what is the consequence of not doing remedial work? Is summer school enough? What if it is all I can offer? What is the true priority? how do I know?

I know all parents worry...so I know I am not alone in that at all.....but it just seems like there is so much to worry about.....and I dont know what should be worried about first....and the stress of knowing how to worry just makes more stress, which means I dont know who to worry about.......ugh......

Tuesday, June 22, 2010

making sense of it all

I just got David's report card, and before you say anything, Yes, I know for kids with special needs these are essentially a waste of paper. I know that they are written based on the time line of a typical child, so it might just be better to rip the report card up and pay it no mind.....but here is my problem, remember I have 2 kids with special needs, so I do have another person with whom to judge things against.

At the end of his kindergarten year, Matthew was writing his name and some basic words. matthew was telling time without hesitation- on a real clock AND a digital clock. Matthew understood the passage of time. matthew knew all of his letters and could identify them, AND he knew his numbers and had a sense of counting and 1 to 1 correspondence.

Matthew has an IQ somewhere between 68-72. To some this is equivalent to mild mental retardation, to others this scores him in the low average range for IQ.

Today I got David's report card. David is doing better in language arts activities than Matthew was at this age. David is also 6 months older than Matthew was as he ended his kindergarten year. However, David is recognizing only 24 letters, he can not write even a single letter, he can not spell his name, he can identify the following site words- "I" and "A" to which I have to ask- really? These count, or are these just listed to hurt my feelings?

David has made INCREDIBLE progress. In behavior alone he has come a long, long way. In social relationships he has started to show some interest, so it is not all about academics to me....however....I would just like someone to give me a hint....where may David end up? What skills can I expect him to gain? When might he write a D? If he can't write a "D" when do we show it to him on a keyboard? How far can he fly? How far can he progress?

I will promise to put on the rose colored glasses again later tonight....and in all honesty, none of these questions are asked with sadness by me. I am a realist. I need to know the facts. I like to cope with reality. If there is a ceiling for David, that is ok, but I am ready to know a time line....to have a hint what others on David's path in life and in all honesty Matthew's path in life have achieved. If we are talking special classrooms through High School, I am ok with that. If we are talking baggers at the local grocery store, I am actually ok with that also....you better believe my boys will be the best damn baggers that ever bagged groceries, and Matthew would be likely to get tips for his kindness, and David will make an art of packing groceries so they are sorted to perfection!

I just want to know what path we are traveling, so that I can pack my bags with the correct necessities......I just really want to know!

Monday, June 21, 2010

trying to figure it all out

I am not at all sure what to do about tonight.....I cannot believe that we may need help in the evenings, but I also don't want to see David scared again. There has to be some way for us to all be happy together and for me to help Matthew to learn to be angry in a safe, healthy way. The question is can I teach Matthew this BEFORE David becomes too scared.

We had a nice family dinner tonight- sure Jacob was mad about having to eat a carrot, and Matthew was much more focused on having dessert than he was on eating dinner, but regardless, we were together as a family. Finally, it was time for dessert. David went to get out the popsicles and there was one in the box that was opened. Of course, Matthew's first response was that he didnt open it, but by now all of you know as well as I do ,that he opened it. After a quick reminder to tell the truth, we were back on track. Unfortunately, just as I was going to hand out popsicles I found an empty cracker wrapper on the counter that should not have been there.

When we got home tonight Matthew had run into the house and came out hiding something. I of course asked if it was food, to which he responded "no, there is nothing in my pockets." After a quick peek at him, I didnt see anything or that he even had pockets, so I decided to take the easy route and so I believed him. Well, now with the empty cracker wrapper it all made sense. he knows the rule in my family is that if you lie or eat food when you are not supposed to you don't get dessert.....With my heart in my throat I had to follow through...he has to know that no matter what I am going to be consistent.

He knows our house rules, for him it is just a matter of whether I am going to figure out which rule he broke or not. So, I had him throw out the popsicle..of course I knew all too well that this was going to lead to the tantrum of the century.

I can deal with the tantrums. If it was Matthew and I, we could get through it, unfortunately it is not Matthew and I, there are 2 other kids here- kids who need me, and sadly Matthew is a very large 8 year old. No sooner than Matthew started to scream, David started to cry. All he wanted was the noise to stop. In David's world we all need to be happy all the time. David would love it if life was quiet and people followed the rules. My heart broke- how do I get him to understand that people get mad sometimes. That even if Matthew is mad it is ok. If there were 2 parents in my house one would play with the 2 little guys, and one would help Matthew...but there aren't 2 parents here, there is just me. How do I balance everyone's needs? How do I teach Matthew to be angry in a safe, quieter way?

I called my parents hoping that Matthew would talk to one of them, but he was too upset...too mad, he wouldnt get on the phone. I tried to get the other 2 boys into the tub, figuring that David would feel calmer, they wanted no part of it. I tried to get the little guys to play downstairs while Matthew and I were upstairs, but David needed to be near me. I tried, I thought, I tried.....I didnt konw what to do. I did all I could....we needed help. David and Jacob needed to know that they can play while Matthew is mad. They needed to know that there are people to help us if we need help. they needed someone to hold them while Matthew was angry, and I was with Matthew.

Thankfully, I called my friend and she came over. She and David and Jacob read books, snuggled and played. But how often can we do this? How many times will this be ok? Why are there no directions for how to be a single parent to 2 children with needs and a toddler? Why is there no one who can tell me how to do this better? differently?easier?

I have placed an ad for someone to come be with us a few evenings a week. For now the only thing I can do is make sure that David and Jacob feel safe when Matthew is angry- I know they are safe, but safe is a feeling- it is an emotion. When Matthew is yelling and banging and screaming and loud, to David and Jacob it feels scary. It feels out of control. It feels overwhelming. It is unpredictable. It is too much.

By 7:30 it was all over- there had been progress- Matthew came downstairs and apologized to David and Jacob all by himself. Matthew joined us for the bedtime routine and they all went to bed no worse for wear. For me however, all I have thought of all night is what next time? How can we do this better? What do I need to make this feel as good as it can for everyone? How many times before Matthew learns the limits? How many times before I know how to do this perfectly?

I do have to remember that there was growth in Matthew. That the boys ended the night happily. And maybe, just maybe it is time to learn that popsicles are the devil......and sugar water isn't worth this much stress!

Friday, June 18, 2010

Team meeting

I had a meeting with Matthew's teacher, social worker and the chairperson for special education today to discuss Matthew's upcoming school year. I am really trying to come to terms with the fact that this teacher who I love, who was supposed to be with us, err, I mean Matthew, for a total of 3 years is leaving. She is so good that she is being transferred to another classroom within the district that needs her. I get that, I understand as the director of a program that at times you take the best you have and move them because you need your best somewhere! But just because I get it, doesnt mean I like it!

This is one of the first times that i feel like I have a real TEAM for Matthew. We have worked out the nuances of communication, I understand them, they understand me, and we both have a true appreciation for each other. I know that there will be times that I will "need" more communication than they can offer. I know that there will be times when they will be busy or cannot respond to a topic or concern I have. We both know that if there is an issue that cannot wait, that we will respond appropriately.

We can read the appropriate tones in each others emails, we do not expect perfection from each other and most importantly, we all truly care for Matthew. This teacher loves him. He is her kind of kid! I know that she will miss him, and wishes that she had the next 2 years with him also.

We met today to discuss whether Matthew is appropriate to remain at his elementary school or if an out of district placement is best for Matthew. What I liked about this meeting is that I was a true team member. My questions were met with sincere answers. I was treated with respect, and they shared my concerns. The chairperson for special ed shared enough information with me so that I felt very comfortable and know that they are looking out for my son. They have his best interest in mind. And, most importantly, while they feel that for now they can offer him the best education, this does not mean they can offer that forever, and they encourage these conversations.

One of my favorite parts of the meeting was as we discussed who the aides would be in the classroom for Matthew for next year. I get the sense that this is a high burnout classroom, so at times aides are moved around year to year as necessary. However, one of the aides who has now been with Matthew for a few years is purposely being put in his class again next year because she "gets him" and is well aware of all of his tricks, scams and maneuvers. His teacher made sure to keep this aide with him because she knows it is important that we don't lose time with someone trying to figure Matthew out.

Matthew is a tricky kid. I swear he could get anyone to do anything for him. However, this is part of the problem. Having this aide with him means that precious time will not be lost. It means that we are not starting from scratch.

I will forever be thankful that we had a year with Mrs Warner. She has changed my life and Matthew's life. She has taught me to believe in myself, and has been there through me during some tough times with Matthew. She has helped me to understand that there is some mental illness in Matthew that we are dealing with. She has shared our success, and been sad at the challenging times, however through it all she has set a high standard for Matthew and been a strong support person for me.

She has invited us to stay in touch. She even suggested that Matthew can keep in touch if he wants to. I am thankful that she is remaining in our district, I have her email and I will work hard to use it only as needed.

It is a rare occasion for any family, but especially a family with children wtih special needs that you find someone who is as supportive and on target as Mrs Warner. I am so thankful that we moved to Bethlehem, and so very thankful that there are so many people in our world who are there not just to educate my children, but also to support me and to help me understand all that each of my sons need.

Wednesday, June 16, 2010

he cracks the code

Ok seriously, how is this possible......how can this be.....and what do I do with the information.......

Matthew has cracked the code to the food lock box. I specifically purchased a lock box with a combination that would be hard for him to do... yet since Sunday morning I have come downstairs and he has had food. Food that I was 99% sure I had locked. Food that he should not have had access to....but alas, food he HAD so he must have access to......

Since Sunday I have questioned my sanity. I have checked and double checked that the box with the snacks is locked. It has been locked when I go to bed, yet unlocked in the morning....maybe I didn't spin the dials. Maybe I thought I locked it but hadn't. There were truly moments when I had to question my sanity.....Alas tonight the truth comes out.

The boy has cracked the code. The boy who mind you had to ask me on Saturday where to put his dirty clothes. Could not remember to pee everynight before bed if I didnt tell him to. But he has cracked the code...knows how to access the food....I am telling you if he wasnt so busy wasting brain cells finding ways to drive me crazy, he might truly be a genius.

Well tonight....I have a master plan. I am changing the code- Two can play at this game! Tomorrow AM I shall be the one laughing..

Childish? Maybe
Pathetic? Ok, so what?
I have to create the illusion that I am in charge here because I am seriously beginning to think Matthew might be smarter than me....so while I still have the chance, I will use anything I can to my advantage....

What's that you say? You want the code? NEVERRRRRRRRRRRRRRRRRRRRRRRRR MWAHAHAHAHAHHAHAHAHAHA
I have to have some fun when I can!

Monday, June 14, 2010

home almost a week

Well, we have had 6 days together as a family, and life is becoming routine again. I have had the opportunity to have some pretty important reminders.....

1. Matthew is seen differently by new people or people who do not see him all the time.
I am working hard to take some time to see Matthew as people who don't know him well see him. This is not easy for me, but I feel it is super important. Every human has to feel good about themselves. We all deserve to be loved and seen positively daily. While I struggle to deal with all that is Matthew daily, it is all that he has to offer, and so I have to see what others see and appreciate what he offers to new people.

This weekend we went to a get together with a bunch of my old friends from high school. The first person that Matthew spoke to he asked if they had a drum set. I immediately started to roll my eyes because to me this is an old question. A routine fall back question for Matthew. For my friend though, this was a NEW question...one that he found charming and endearing and since the answer was YES, he did have a drum set, Matthew immediately fell in love and spent the evening with my friend. He talked with my friend about having a band. They talked about what kinds of drums they each had on their drum set. Matthew idolized my friend, and hung on every word he spoke. This was a first time conversation for the two of them. For me this is a daily, tired conversation, so it is hard to be excited by it. But when I remembered to listen to the conversation with the enthusiasm of Matthew the drummer, and I remembered that he is truly a talented drummer, my heart smiled, and I could be joyous of all that Matthew the drummer had to offer!

2. When Matthew asks for something, it is usually filling a need he has. Saturday and Sunday it rained, was dreary and on the colder side, and was just simply not pool weather. However, for Matthew the town pool opened on Saturday that means YOU HAVE TO GO TO THE POOL! I must have been asked more than 100 times if we were going to the pool. If the pool was open. What time was it open. What time does it close? What time are we going.......finally I broke down.

I'll show you I thought....THE POOL IS CLOSED!
Only problem with that......

the pool was open.

He jumped off the diving board for over an hour. And David and Jacob and I hung out by the pool. We played in the pavillion, we watched Matthew jump off the diving board.

AND....


we were not alone at the pool. So others were there too...even on this cold, cold, wet day. I have to remember to say YES whenever possible...even sometimes when I think it is not possible.

3. Smiley faces and treasures may just keep us all sane!
I am not a believer in toy bribes. I think that kids can be taught to do the right thing for intrinsic motivation. I believe truly in the power of doing what you are supposed to because it makes others happy and because you are part of a team, in our case TEAM BLOOM. However, I have gone out on a limb, and currently the boys are each working to earn smiley faces. 10 smiley faces can be turned in for a piece of junk from the dollar store! They are loving it, we are working on goals that need to be tackled, and you know what they are learning.

David is able to tell me if he listened or not and whether that deserves a smile.
Jacob can tell me if he whined or not and when and why.
Matthew can tell me if he listened to my requests on the first try.

By design it takes them days to earn a toy, so hopefully they are learning to make good choices because good choices feel good and make us happy....but if a toy that costs less than a dollar can make our lives this easy....well I may just have to rethink my parenting strategies.....

But I do have a question....if I do a good job, and I am patient this weekend....who is buying me a toy?

Tuesday, June 8, 2010

He's home

My guy is home... I picked him up at 2:00 today. What a difference a few days make! he is happier. He seems to be proud of himself and you can see he feels good. You can also see that he is working hard to cooperate, and trying his best to get back into family routine.

When I picked him up from the hospital he made my heart smile...he had really struggled to earn "smiles" at the hospital. Smiles were used by the the kids to shop at the prize store. The first day he was there he got a truck, but then over the next week he never earned a smile to shop with. Finally on his last night he earned 2 smiles and was ecstatic to go shopping. I figured for sure he would purchase a race car or a paper airplane he had been eyeing since day 1. Instead, when I picked him up he handed me a blue teddy bear and said "this is for you mom. I worked really hard and earned my smiles and got you this bear. I am so proud of myself!" I melted. This is the Matthew I know. This is MY Matthew.

It is very important that I remember that Matthew may need a tune up again in the future. That I keep in my mind somewhere that he deserves to live a happier life. That while it is frustrating for me to live with him when he is tantrumming a lot, it is worse for him. He does not feel good when he is like that. He does not have control over it. He has a mood disorder. He cannot control when his moods are up and down anymore than he can control all of the other things that the fetal alcohol syndrome does to him.

it is hard in the middle of the battle to remember to help your opponent. In this life Matthew is not my opponent but it had felt like that for a while. Matthew is on my team, and i am on his...but I may need reminders from those around us. If you see Matthew slipping, please tell me. If you see me being too harsh, please remind me. If I am frustrated and need a break, please remind me to take one. There is no one else here to tell me when I am off the mark. Those of you reading this blog are our family, our community....and it is true, it takes a village to raise a child. It takes a village for my family, and I have learned over these past few weeks we are surrounded by an AMAZING village! What a community of support we have! We are surrounded by amazing people.

I learned over the past few week and a half that life with a child with Fetal Alchohol syndrome is harder than i was aware. When I was living in the midst of our chaos it was just that...it was our chaos. It was life as I knew it. Now I know that life has to be slower paced. I have to make time for fun. If we are not having fun then something is wrong. We have a new behavior plan at home. Bedtime is more structured and there are expectations of each of the boys that they will perform certain tasks.

With summer around the corner, we are going to slow down, create more structure and ride the ride! Thanks to everyone who got me through this past week and a half. I am so happy to have my boy back home! And proud of myself for allowing him the opportunity to get the medical care he needed instead of allowing my fear to continue to make us live as we were. Mental illness is still illness, it just happens in the brain where it can't be seen.

Friday, June 4, 2010

A Matthew Tune Up

This has been a hard, hard week. If your child is in the regular hospital, you get to go and stay with them, and be with them throughout their entire stay. You are there to comfort them, to monitor what is going on, and to learn from the doctors what the game plan is.

It has been a week now that Matthew has been in the Psychiatric hospital, and I have seen him for about an hour each day. It has been a week of soul searching, learning, and making important decisions. Yesterday and today there is a marked change in Matthew- he is more comfortable in his own skin again. He appears to be a little more at peace with life. He is laughing, and a little more focused. However he says clearly that he is not ready to come home yet.

The hospital environment is allowing him to be somewhere where the expectations are never changing. The rules are the same day to day and routine is constant. Even more than at school, the hospital has a strict routine that never varies. For Matthew this is the ultimate in comfort. This is also not something that can be duplicated by most.

Outside time is from 3-5. Dinner is at 5 pm every single night. Then you bathe or shower, get in pajamas have some free time, and a movie goes on until it is time for snack and then bed. School is only for a few hours during the day, and the remainder of the time is in group therapy or individual therapy or group activities.

I think being in the hospital has provided Matthew an opportunity for some quiet, a break from all of the noise and stress that he lives with in his head. I think the strict routine has provided him the opportunity to slow down a little.

This blog is about me being honest and open and hopefully at some point our story making this an easier road for someone else to travel down. In being painfully honest I have to confront the reality that this has been a great week for us at home. The stress is gone. The house is quiet. Life is easy. We are happy. We are safe and David, Jacob and I also have a predictable rhythm to our days. There are no upsets, tantrums or outbursts to contend with.

Ths is not to say that the boys and I do not miss Matthew- David and Jacob mention him constantly and one night Jacob slept in Matthew's bed because he missed him. However, today in therapy with Matthew I was reminded after being with him for 30 minutes of the intensity that comes along with Matthew- he is larger than life. He is fast paced, and his brain races from thought to thought. His energy is awkward, makes me uneasy and is hard to tolerate. He does not view the world like others. He is at times giddy and excited about odd things, and alternately sad and quick to anger when you least expect it. He is the definition of unpredictable. This is hard to live with. This is hard to balance.

I have the weekend to prepare for Matthew to come home. I don't know what that means, and I am not sure what to do, but I do know I need to emotionally and physically prepare for matthew to come back. I need to make the house physically safe for matthew. I need to think about what he will be obsessing about that might be unsafe and make sure it is away. i need to make decisions about how I can keep him from accessing food at all hours of the day and night, and plan for how to set up the kitchen. He had hidden unsafe things in his room that I have now found, and I need to make sure that all of the unsafe objects are out of his reach.

I also need to mentally prepare for Matthew. he and I need to find a way to have more positive encounters. I am putting a new behavior plan in place for our house that focusses on positives. The goal is for him to earn smiley faces and little prizes and also to earn special time with me.

It is hard as a mom to recognize that life is easier when your child is not at home. For parents of kids with fetal alcohol syndrome, this is usually the case. These are challenging children to raise. Their brains have so many problems. Behaviorally, emotionally, socially these children need a lot of support- constant, constant support. I have 3 more days most likely to really prepare for Matthew to come home. I am counting the minutes until he comes home and my family is complete under one roof again, but I am also counting the minutes until he comes home because I know life will change again. All I can do is try my best to minimize the changes for Jacob and David and I and to recognize that all of us need a tune up every once in a while.

I know that this time in the hospital has been a great tune up for Matthew. So much of what has happened at home over the past year was because his medications were not controlling his emotional needs. However, even with optimal medications, Matthew is a child with brain damage due to alcohol use by his mom while she was pregnant. This damage is irreparable, and will have life long impacts for Matthew. Such a preventable tragedy.....I am so very glad he is mine and that I ahve the honor of making him the very best person he can be! I am learning so much about myself, our friends and our community as we travel this path to help Matthew.

Sunday, May 30, 2010

today's questions

I can spend a lot of my time beating myself up....I am actually very, very good at it. I like to beat myself up or question myself so that others dont have to. In my head all day have been the following questions....
1. Do you think Matthew would have been like this wherever he lived?
2. Do you think there is REALLY something wrong with Matthew?
3. How could one person REALLY adopt 2 kids with special needs? What are the chances of that?
4. Maybe it is my fault. Maybe I don't spend enough time with them. Maybe I spend TOO much time with them. Maybe I don't really know how to be a good mom. Maybe I watch them TOO closely. Maybe I dont watch them closely enough. Maybe it is true---you really do need TWO parents in a household.

5. Could I really have adopted TWO kids with needs?

Whenever I call Four Winds I am hearing how GREAT Matthew is. Of course he is great. Why don't I EVER see him as great? Why is this kid who is AWESOME for so many such a struggle at home? Such a struggle at school? Maybe school is the problem? But if school is the problem, then home HAS to be the problem also.

Matthew is cute, and funny and endearing...for a while...but he is also all encompassing, and exhausting, and repetitive. Sure, today when I was there for an hour and I had an hour JUST for MATTHEW, we played cards, played CANDYLAND, and chatted- but I never get to really chat with Matthew. There is no chatting, in the give and take sense of chatting. It is like he talks AT you.

The day is a report- "I had pancakes and cereal, we went outside, we played basketball I like basketball, do you see the hoops. I am good at that. well goodbye it is snack time, my group is going outside.

ME- Matthew I just got here. Let's play some more, and chat.

Him- NO, that's ok. It's snack time, I have to go.

ME- Let's go find out if it's snack time.

Him- no that's ok, oh alright.....we found out it wasn't snack time.....
Him- I ride on the bikes, you need a helmet, I have lots of friends here. My friend william is my roommate- this is his bed, he got the girl bed. He has a Dora blanket. I have spiderman. We watched a movie about a dog. It is funny but inappropriate. There are bad words. I have to go get snack.

Three times we asked if it was snack time. Three times it wasn't snack time. I was there for an hour, and while we played a few games, there is no emotional connection. I guess that is what makes this so hard. I am mourning for Matthew. I am missing Matthew. I don't want a goddamn report. I want a "mom I love you, I am so sorry. Please take me home. I am so sorry. I miss you".

That is not coming....I can prompt him to say it, but it is not genuine. Does he not know that my heart is broken without him at home. That my brain is fighting. I want my family whole again, but I want life to be easier. I want to find him funny and cute and endearing, but part of that means that there is give and take between he and I, and with matthew there is no give and take.

Friday, May 28, 2010

no where to go but up

Today I admitted matthew to Four Winds Hospital. Today I think we made a painful step towards change. If nothing else, maybe they will adjust medication. Maybe they will be able to work and find the right combination of medications that will help him.

After spending a few hours with matthew while we waited for him to be admitted, it is a wonder that he can live and function at all. He is constantly distracted. The world is a distraction for Matthew- "how much is 2*1? What is 1*2? What day is it today? When is your birthday? are you married? Do you have any kids....yes sometimes I feel sad. I have friends. We play together. I get angry. What is 1*3? Why are your nails so long? Do they hurt you? What is 4*3?

That is what it was like to be with matthew today. That is just a little glimpse into his world. How can he be expected to learn? to make friends? To be nice? When his brain is racing constantly?

Even the simplest of questions- what is the same between an apple and an orange- lead him down all sort of tangent paths. Apples are red, oranges are orange. Two years ago on a Thursday at midnight I had a dream about an orange. Oranges and apples you say? Apples and oranges- mmmmmmm, I would like some milkshake.

What is the same about an apple and an orange?

They are round...both are round. can I have a milkshake now?

Something has to stop the motion. Something has to clear Matthew's head.
Hopefully over the next week they will make some changes. Hopefuly we can slow Matthew down.

Hopefully. Hopefully.

Thursday, May 27, 2010

rock bottom

I cannot figure out how to cope with today, so I have decided that maybe I need to write out my feelings and fears and hopefully that will help.

It started out as a good day....it had been a rocky week- a rough Monday started with me driving Matthew to school- he had decided he just wasn't going. After the principal and teacher got him out of the car he had a good day.

Tuesday, I went out to start my car and it simply wouldn't start. $1200 and some new tires and a new part for the car later, and the day was looking up. Unfortunately at 3:30 I got a call that Matthew had been tantrumming for 45 minutes and would not get on the bus to go to his after school program. My car was still in the shop, and there was no one who could help me get Matthew. Luckily at the last minute he got on the bus himself and had a great day at the after school program.

Wednesday was a good day- the kids were happy, the sun was shining and all was good.

Thursday however we hit the bottom- the low, what I hope to be the turning point for Matthew.

The morning started off ok, the kids were playing and happy together. Unfortunately, Matthew made a few bad choices- told some lies, refused to do his homework which he had not done Wednesday night either, and stole some food. Sadly, while none of these alone were big incidents, this meant that he was starting his school day with 4 zeros, and therefore would be missing recess. Had he just told the truth, or done his homework, or not taken the food he was told he could not have, all would have been fine....however, once matthew realized he was not getting recess, the day quickly plummetted.

It started with him refusing to get on the bus to go to school. He sent the bus away twice. So I drove him to school, and he would not get out of the car. I went in to get the principal to see if she could help. She brought out his teacher and the three of us worked with matthew for 30 minutes trying to get him out of the car. We encouraged good choices, we reminded him that while he had lost some things he still had free time at school. he still could play at home this evening. he could read the daily schedule. he just had to get into school. Sadly, he refused, and refused and refused.

After 30 minutes of trying to encourage him and cajole him into school, the teacher and principal decided it was time for the next step. The Safety officer for Bethlehem schools was called to escort matthew into school. My boy is 8. A young, young 8. I have never been so sad and scared....what would happen? How would he react? What would I do? How did our lives get to this point? Why God? Why?

The only one not phased when the safety officer arrived was Matthew. It took the safety officer and a policeman 25 more minutes to encourage matthew to get into school. I was asked to leave- have you ever had to drive away like that? Matthew crying, jacob worrying, me a wreck...and I drove away.

I watched from across the street until I saw Matthew safely inside. I checked with the policeman as he was leaving, and he said all was ok.....It took all my powers and I didnt call the school until 12:30 to check on my boy.

At 2:30 I got an email from the teacher- asking that I not call during the school day. That it disrupts the class. That she will call if there is a problem. That she will write in the notebook if he has a hard day. That NO NEWS is GOOD NEWS......My son went in to school today escorted by 2 policemen.

NO NEWS is GOOD NEWS? There is no good news......not today....not for me.

Sunday, May 23, 2010

a good day- simplicity at its best

As a single mom who LOVES sleep, often on a Saturday or Sunday morning I will lay in bed drifting in and out of sleep listening to the sounds of my house. Sure, if there is impending drama, I will get out of bed, and we will start the day, but sometimes, like today, in my quiet, when the boys think I am sleeping, I can hear the growth and love between all of them.

All three boys were in Matthew's room playing with cars, and the conversation and play was incredible:
Matthew- "here's the orange car Jacob"
Jacob- "thank you"
David- "we're going to the store"
jacob-"what we buy"
Matthew-"we are out of food"- note even in his sleep the boys is worried about food-LOL

And on this play continued for almost 30 minutes. At the end of that time, the boys came in one at a time, and crawled back in bed with me and watched Mickey Mouse Clubhouse. Sure there was some drama between Jacob and Matthew about who would lay where, but I was too busy watching David bring in ALL, and I do mean ALL, of his covers, to let the drama spoil my moment.

This was just one of those perfect mornings that started the day off happy.

The day has continued with Matthew going out with his residential habilitation worker, who for 4 hours per week takes him to work on skills and for some just Matthew time. David, Jacob and I headed to Wal Mart for some much needed grocery shopping and errand running.

Continuing in his adorableness, as we walked into Wal Mart, David insisted that he needed a hair cut, and then both boys begged for a new book- today was one of those days where a $3 book was worth making them happy....and who can deny a cutie like David a hair cut? Even the hair stylist couldn't resist him when he batted his cute little eyes at her!

We will round out the day with a hike at 5 Rivers with some friends followed by dinner, hopefully some snuggle time, some reading and then bedtime!

These are the days where love is built, memories are made, and the family connects! These are the days that make it worth going through the rough patches....these, in reality, will be the days that I hope we all remember forever!

Thursday, May 20, 2010

scary mom moment

In my last post I was lamenting feeling down and wanting to just soak up the good moment we were living in....well apparently the down feeling was me just having that good old mom intuition. Monday at noon I got a phone call from David's school- he was off and had a low grade fever 99.9 and just didnt look good. The nurse wasnt sure if it was seizure related or not, but when I offered to come and peek at david the response was a YES, so I drove to his school.

needless to say, David looked horrible- he wasnt speaking, and immediately his bottom lip came out as I entered the nurses office, he crawled on my lap and whimpered...I tried to get him to talk or tell me what was going on, but he said almost nothing. Fearing a seizure was coming, I decided to take him home. The entire ride home he looked HORRENDOUS...I wasnt sure if he was having a seizure or not the whole way home, but he just kept looking worse and worse.

When we got to the house he did a very odd breathing thing, and could not respond or get himself out of the car. I tried to pick him up to carry him inside, but his body was just stiff. Finally after a few moments I was able to carry him in and he asked for me to sit on the couch with him. I covered him with a blanket and lay with him. I had called my mom after hearing from the school, mostly because I was very anxious and wanted to chat with her as I drove to school. Thankfully she called back as we got in the house and was able to come and see David and me.

As we lay on the couch David was just stranger and stranger acting and looking. His body looked tortured. His eyes said so much, but not enough for me to know what was wrong. Was he sick? Was he having multiple seizures? Did he have a sore throat? there was no way to know, and he was unable to tell me.

After my mom arrived we decided to give him advil because his fever seemed to be going up. After more than 45 minutes, the advil had done nothing and David was laying on the couch looing like he was sleeping, but really awake the entire time. His eyes were so heavy, but he could not sleep.

My mom left to go home with a promise that I would keep her posted. Around 4:00 I touched David again and his fever was scary high- my guess, because my thermometer was broken was likely that he had a fever of 103 or higher. After giving him more advil, and with only an hour left before the pediatrician closed, I called and got David and appointment. I carried him to the car, and then into the doctor's office- he seemed to have absolutely no energy at all.

The doctor checked David out completely and found nothing. With a promise to go to the hospital for bloodwork if David wasnt better soon, and the knowledge that our doctor was on call if he was needed, we left the doctor's office knowing little more than we had arrived with. The only positive was that we were not dealing with an ear infection or strep throat....the cause of the fever and fatigue remained a mystery- and the biggest mystery by far was David's inability to speak.

Time ticked by slowly when suddenly at 5:30 David picked up a book, flipped through the pages and giggled. I was shocked. We were in the car but suddenly he had a twinkle in his eye and his language had returned. Now this was strange. I was very thankful, but even more curious. I have never heard of a virus or infection that causes these symptoms.

David remained healthy and happy all night long. He returned to school the next day, and seemed to be fantastic. The only thing that changed between noon and 5:30 was that the ADD medication David was taking, Concerta, was out of his system. Concerta can cause or be related to high fevers. Concerta can cause severe listlessness.

Concerta is a medication that will never, ever enter my sons body again. Thankfully this was a short lived intensely scary event. Sadly it is a reminder that David reacts oddly to medications at times.

Sunday, May 16, 2010

I'm down and can't seem to get back up again

I can't shake my down feelings. I can't seem to get out from under the black cloud. The boys are both status quo. Nothing exciting is going on with either of them today or the last few days....and now I can't get out of my own way. I can't stop feeling down,and I feel like I am living life waiting for the next bad thing, or the next hard time.

I want to enjoy this day or week or month of quiet and instead I am just passing time. I feel like life has been such chaos recently that we have just gone from chaos to chaos and there has been no quiet- we might have found the quiet and I can't even seem to enjoy it.

I am on high alert with David, watching and waiting for a seizure to hit. I can't tell how he is doing and can't get comfortable that he is stabilized- he was hating the Daytrana patch for his ADHD so we have switched to Concerta. He was so sad every night as I had to take off the patch- while I know it didnt really hurt him, he was afraid it would hurt and that was causing anxiety. The huge tears he cried as I took of the patch every night just wasnt worth it so the doctor and I have agreed to try a pill instead. He started Concerta this morning, and we had a good day, but it wasnt a well focused, attending day. However it also wasnt an unfocused scattered day, so I guess it was good.

Matthew is apparently status quo at school. I had asked the teacher for more feedback because he was spending time in the quiet room 3 of the 5 days last week, and that was of concern for me. For her this is not of concern, and I get that....at home, if we had a quiet room, he would have been there every night this week just about...but I still havent wrapped my head around the reality that he is out of control at school now also....I know it's been a year, it is time for me to wrap my head around this reality but I still remember the Matthew that no one would have believed was out of control at home. The Matthew that I tried to explain to others, because he was always perfect outside our house.....now this Matthew sems to be gone, so when he is in and out of the quiet room it is not significant enough to warrant a phone call home. Recently it wasnt even significant enough to be noted in his notebook- there wasn't time....when did it get this bad? When did he get this out of control? Why???

The highlight of the last 2 days has been that David has pooped on the toilet. He is 6.5 years old and I cheered and high fived last night when he pooped on the toilet at Border's Book Store. I must have looked so silly. How many people cheer for a six year old who has pooped on a toilet for the first time? This is my life.

There is hope, since today he pooped in the toilet once and in his pants once, that we are on the road to success, if I watch and listen closely enough to his cues. If I can get him to have success in the toilet a few more times, maybe we will be on the road to complete toilet training before he is 7. This will make him toilet trained younger than Matthew- This is supposed to be something to cheer about? UGH.....it seems so silly. I am an educator. I have been unable to train my 2 children in such a simple life skill. I know they have not been ready, and I am a believer that you cannot teach this skill until a child is truly ready...but still while I am proud, and excited to be sure, it seems like an odd thing to be cheering over!

I need to plan some fun into our lives. I need some care free excitement that we can enjoy. Today we hit a playground and that was carefree and fun for me. The boys were great, we were with friends and it was fun. Tonight we watched a movie and snuggled on the couch and that was also good. But when I am alone at night after they are sleeping I am in a deep funk. When I am not in the chaos of managing all 3 of them during the day there is no time for funk, but it hits and hits hard as soon as they are sleeping.

Tomorrow Matthew has some reshab time, so that will be good- David and Jacob and I will either nap, or maybe we will find something fun to do together. For next weekend I need to make sure to schedule something to look forward to. Something that I can spend the week getting excited about. Something either with or without the boys, but something that makes it worth going through the week.

The goal is to enjoy the easy times that come between the chaos. That time is now. The goal is to enjoy the here and now. I am going to try really hard- to snuggle and giggle and enjoy tomorrow as a regular day. That is my promise tonight!