Thursday, September 16, 2010

A little reflecting......

My heart has been a little heavy lately and I haven't had time to sit and write it all out. This blog is MY therapy and if I don't clear my mind i can't let it go. Usually once I post about something I sleep better at night. Funny how things can weigh on you!

Asa will be starting school in about 3 weeks! This is gonna be a huge change for both of us! I know it will be wonderful and I think most of anxiety is about the time leading up to school and planning for school, not school itself. The paper work, the choices available but mostly the evaluations!

Asa is evaluated often. Every 6 months for each of the 3 therapies and EI. Plus a monthly handout from Early Intervention. Then there is the yearly appointment with the developmental ped. Trust me, no kid is more closely watched!! But I've found that starting school requires a different kind of evalution. It requires ME to evaluate Asa!!

You see, when you have a kid who doesn't follow the typical path at some point you stop looking at the typical kid path and you look at YOUR child's path. It is better if this happens sooner rather than later. I remember when Asa was a newborn and I'd think "I don't remember my big kids doing that" or "didn't Anna, Cade and Gracie make eye contact by now". And then there is the comparing him to other typical babies. He holds differently. He holds heavily!! You know when your baby falls asleep in your arms and is just so heavy, that was Asa's norm for soooo long! It is a little better now! It is just normal to compare kids.

At some point though I stopped comparing Asa to other kids. When we did evals I was excited to see him accomplish goals and to set new ones. Even if the ones we checked off were tiny for the typical kid! That's how I got the title for the blog, celebrating inchstones. That is what I do! Each small step is huge for Asa! So maybe others look at him and see all he CAN'T do but I look at him and see the huge strides he has made!

But not for school! I have to take a hard look at what he can't do. That is the only way to be sure his needs are met. I can't say "yay, he can bottom scoot". I have to look closely at the classroom to see if Asa will be able to get around. I can't look at his sensory issues and just see how well he is doing lately. I have look closely at the way we've adapted our whole lives so he doesn't get overstimulated. Which classroom is going to be more sensory friendly. To get Asa what he NEEDS for school, I have to take my blinders off! This doesn't mean that I don't see the great strides he has made but I also have to see where is so far behind.

Another realization is that despite all the therapy, supplements and work we've done, Asa has not caught up. He is no closer to his peers than he was as an infant. Like I said he is the most watched kid! I have most of his evals. If I go back and compare I can see that Asa has made great progress on his devlopment arch but he is no closer to a typical development arch. He has been consistantly 75% delayed gross motor wise. He has been consistantly about 50% delayed in other areas. That means at nearly 3 years old, he has the gross motor skills of a 9 month old. And his communication and cognitive skills are that of a 16-18 month old.

I guess I expected that at some point he'd close the gap and get closer to his peers but in 3 years that hasn't happened. I guess it still could. One good thing about my new awareness is that I can better plan for Asa. I can stop putting off those adaptive things that I've hoped we'd outgrown! With such a delay it seems highly probable that Asa will be in some type of chair for the mobility. A chair requires a ramp so why not go ahead and get started on that. It seems unlikely that he'll be able a regular bed with no adaptations so why not start shopping now. It takes eons to get SN equipment.

I'm not depressed about these new revelations. I just don't usually spend much time focusing on Asa's delays. Does that seem crazy since my whole life is about his delays, therapy and appointments. I just see a cute, sweet, tough little guy who is full of so much love!

A brilliant mom, who has a SN son, blogged about her son starting 7th grade recently. Her words fit my mood perfectly. Like Alison, I realize my child doesn't just belong to me. Asa is so much more that mine. God's love for me and Asa covers all sense of loss and defeat that a negative eval can carry! His love and comfort have seen me through many hard times and will this bump in the road as well.

Please go read Alison's post! I feel like I can learn a lot from her!! She is also a mom of 4 but her kiddos are much older than mine. I can only pray that I manage this new life as well as she has helped her family to do. They are involved in sports, church, camping, well, life! That is my goal and my desire! Delayed or adapted or whatever, we will be involved in LIFE!!

So school begins and Asa's teachers will fall in love with him just like everyone else who works with him. Of that I have no doubt. I'm so thankful that there are amazing people in this world who don't just see the delays but see the smile and twinkling eyes. And if I should happen upon someone who can only see the delay, well, he or she better look out!

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