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!

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


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!