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????

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!!!!

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.

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!

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"?

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?