Sunday, May 19, 2013

The Question Reaction

Five Things You May Wonder About Me
(but were afraid to ask)

I get asked these questions from time to time. It's usually someone I know really well (or someone with very little tact or kinda "Aspergery"). I'm pretty much an open book, so I decided to write this. It may help you know me better, Boog better, or someone else you know in a similar situation.

1.  When did you know Boog was "different"?
At about 12 months my motherly instincts told me something was "off". His gross motor skills were fine. He crawled on time, walked on time, etc., but I noticed other things like lack of eye contact. He seemed to be in his own little world a lot. It would take me six more months to get a pediatrician to listen to me, and two more years to get him into the school he needed. I hope to shorten this time for other families.

2. Are you having more kids? 
No. Through genetic testing, we found out we have an over 50% chance of having another child with autism. This other child could be less functional than Boog. Does that mean I wouldn't love that baby JUST as much? No. It means that it takes two parents fully committed with Nana, Papa, friends, teachers, an OT, speech therapist, PE teacher, music teacher, and more to do as much as we can now that will help Boog later. With another baby I would either be doing a huge disservice to Boog, the baby, or both. 

3. Are you okay with that?
Yes and no. I would love to have another child sometimes. I miss the excitement, the milestones, the new things they do, but you have to remember...Boog is 3 1/2 and we're still hitting and working towards many milestones. I still want to hear "I love you" just like any other Mom. I've just been waiting a bit longer.

4. Will Boog ever talk?
Yes, I believe he will. Boog has had an MRI (to make sure brain formation was normal), EEG (to make sure he's not having seizures), an EMG (to make sure his brain send signals to his extremities and the most awful test to have to watch ever), a muscle biopsy (to make sure he didn't have a syndrome causing his poor tone that may be degenerative), and genetic testing (to rule out thousands of things like "fragile x"). Every test came back "within normal limits", meaning there is no physical reason he won't talk at some point. Can I see the future? No, but if I could I would be RICH. All I can say is this: Someone asked my mom if Boog would ever talk. She replied, "He does talk, it's just in his own way. You have to learn his language if you wan to hear him."

5. Do you worry about when you're not around? 
Every day. Every day at some point I worry what would happen to Boog if I got hit by a bus. I worry about when I'm old and I leave him. Now, you've asked something I can really explain. THAT is why I push so hard right now. It's been proven that early intervention improves the outcome of what someone with autism can accomplish. The more I push, the stronger he becomes, the less I have to worry. I also make sure I have other people fully informed about "all things Boog" in case something happens to me. Both of my parents know every detail of his diet, OT, and other needs. They think they just need to know because he's over there so much, little do they know that they're a backup plan if an asteroid falls out of the sky and just happens to smoosh me :) Not to mention Boog's Daddy, who could do it all by himself, but I would never ask him to. He cooks the GF food, works with Boog about the potty, comes to teacher meetings, and changes many many diapers. He's the best Dad I've ever seen.

I hope this long post helps you understand us a little better, or someone else in your life.

Please let me know if you have any other questions that I've left out. As you can see, I don't have a problem with conversation :)

-Boog's Mommy

Friday, May 3, 2013

The Dream Duality

I have always had "dream issues".

For whatever reason, I have had very vivid dreams for as long as I can remember. The good ones were cool, but the bad ones often had me walking in the dark across the house and saying "Momma...bad dream...move over"...up until I moved out :)

After that, the husband quickly learned the deal. I nudge, say "bad dream", he mumbles something about "it's not real", snuggle, repeat. Works like a charm.

However, I have been having a recurring dream that I can't shake. No hug or snuggle helps either, because I can't tell you if this is a good dream or a bad dream. I keep dreaming that Boog is talking.

During the dream I feel intense joy and relief. He is talking and there's always someone there I get to rejoice with: Boog's Daddy, Nana, Papa, a teacher or therapists from the school.

Last night's dream had Boog speaking in full sentences. I remember the dream, Boog was playing on this ENORMOUS playground set. It was seriously as big as a house. It was like a playground and a treehouse had a very exciting baby. Now why I would let Boog on this thing without me? No idea, it's a dream. Anyway, the thing collapses and I rush over to find Boog. He's fine and we walk away... That's when he begins to talk. Apparently the fall resulted in speech. I immediately take him to see my mom and watch them have a conversation. I told you they were vivid dreams.

Then I wake up. And again deal with the fact that the dream wasn't real, and my Boog can't say a word, much less full sentences. It's a happy dream, so you can't call it a nightmare... So what is it?

I also sort of don't want them to go away. Despite the pain of realizing the dream isn't true, the joy of hearing his voice is amazing. See my dilemma?

But Boog is doing very very well in school. He is saying "Ma" more now and I'm really starting to allow myself to think he really means me when he says it and it's not just a sound. Moms like me have to be very guarded when it comes to our kids progress. Unless something happens 50 times, is on video, and more than 10 people have seen it occur, we tend to think it's just a coincidence. It keeps us from getting let down if it isn't real, know what I mean?

So, we will keep pushing. Keep moving forward until those words come and I finally have dreams that my very talkative son is quiet :)

Sweet Dreams,
Boog's Mommy