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!

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!