Derek Update

Over a year has passed since his diagnosis. Its funny to me, because the diagnosis isn't really an anniversary of denial or sadness, for me its one of victory. Finally, someone could tell me what was wrong with my son, and with a proper diagnosis I could quit chasing the "developmental delay" and all the crazy paths it was taking us.

A few things I don't regret:

- a gluten and casein free diet, wow, I still cannot tell anyone how much this helped Derek. I know many others say it does nothing, but at the time it was the only thing we did for months and it was a night and day difference.

- chelation. We are at a spot right now where his prescriptions have run out, and we cannot afford a doctor nor the prescriptions. I know he needs more, I know it will help him more, as it proved itself in the past.

- ABA. The GFCF diet and chelation brought my little guy out of a deep fog within himself and sensory issues galore. As those issues started to clear out and lesson the ABA was able to come in and teach him everything he needs to know. Knowing where he was, I just never could imagine the ABA helping him from day one. I couldn't imagine trying to do ABA with a 2 year old who was falling asleep every 2-4 hours all day on and off because he was so out of it and so tired and his gut and brain so messed up from the gluten and casein. It would have been a mess.

What I do regret:

- being scared of ABA. After reading a book where a mom outlined her ABA therapy, where she told of the son screaming through sessions and the harshness of making him sit still, I cried. I could never imagine doing that to my child. However, Derek's sessions aren't like that and never have been. If he cries its because he's frustrated, and that happens all day long in and out of sessions. He's cried a couple times because I'm walking away, but nothing more than if I have to leave to get groceries and leave him home with dad. He loves his therapists and they do such an amazing job with him, I really think its all about the personalities of the therapists and how the sessions are done.

- not being more forceful for things. This is a broad statement, but in general I am a pushover. I have had to learn to demand change, demand answers, demand results.

Here we are, just over a year later. Where are we? I'm very happy with where he is, very happy. He speaks in full sentences most of the time now. He's expressing preference for things "I want to pick a DVD, get Tristan?" Double whammy! Wants to pick his own movie out and wants a specific family member to help. And let me tell you, if it doesn't go that way, total meltdown!
We're working on those too, those meltdowns. I'm not too concerned, he is 3 1/2, pretty typical behavior for his age, and if he's still falling a year behind or so, then certainly typical for a 2 1/2 year old to tantrum over everything.

He's been learning "what's next", so now everytime we leave the house he needs a rundown of our stops. Store, then post office, then home. Has to know where the home comes in.

Oh yes, the fun stuff. Potty training. He's ready, mom just needs to get her act together and get a chair and get going. He's stripping everytime he poos and wets a diaper. We have to watch him like a hawk. He is ok with trying to go in the toilet too, the problem is he's too short to reach over the top of the bowl, poor kid! So mommy needs to get a stool he'll feel safe on and a potty seat.

Tonight, instead of calling for me "mmmoooooommy" like he usually does, he said 'hey momma" just like his older sister always says when she talks to me. SO CUTE. And good imitation skills far outside of immediately mimicking someone.

Concerns from myself and therapists right now are almost all social related. I'm thinking of a couple things right now, one is to go to the school district he's in for Early Intervention and see is they have a NT preschool program that he can go to with an aid. (trust me, this is easier said than done) and second would be to pull him from Early Intervention and place him in a Montessori or Waldorf preschool setting. Not sure what I want to do, we need to have a team meeting to discuss it.

My only other concern is food. Trying to get him to try new things. Also I have been trying to get more vitamins into him, and its another no go. This time I got some syrupy sweet juice and mixed them in. Not interested. *sighs* I just know some of the EFA's and B vitamins would help him out a lot. I know they help me.

Something I was thinking about the other day, as a marker in development, a year ago he was still drinking from a bottle. In that year we've ditched the bottles, went to a cup that couldn't have a seal on it because it was too hard for him to suck, to introducing more cups instead of the specific type, to a straw, to now him drinking out of sippy cups with seals, straws and a regular cup! That's progress!