As I sit here and reflect on our year I realize though we've had our ups and downs, we have had probably more than our share of blessings. I was reminded of that today as we had our meeting to determine whether or not Jasz would continue to receive services through California Early Start.
The beginning of November they actually did the evaluation. Trina, our early Childhood specialist who has worked the most with Jasz, did not feel he would still qualify. She felt like he was doing so well that they would probably do the 6 month phase down.
Over the last three weeks I was asked many times what my remaining concerns were. I kept saying that I didn't have any. I mean lets look at where we came from. 5 months ago we were told by 2 Dr.'s that Jasz had the muscle tone of a 2-month old and that his reflexes were almost non-existent. We were told it would be a long time before he could walk. So, my goals were meek. My goal for Jasz had been that by his second birthday he would walk using a push toy. Well he blew that goal out of the water. He surpassed EVERYBODY'S expectations for him. So why would I feel there was more to work on? Sherry, the OT, last week said to me, "we are heading into the weekend and we meet with your service coordinator on Tuesday. It might be good if you spent time this weekend thinking about what goals you want to work on over the next 6 months. Because even if they say he should be phased out we still need something to work on."
I took that advice to heart. Our first meeting where I was to state my goals I hadn't actually thought about it all...I was just happy he would receive services. So when seeing what I said written down....I felt a little sophomoric. So this past weekend I spent the time really observing my son and trying to figure out what I wanted for him.
It had been mentioned to me by Trina that technically he was still below age level because he wasn't jumping and climbing stairs independently. So this weekend we asked him to jump and he bent his knees and bounced. I took them to the park and Jasz spent a good amount of time walking back and forth over a very small lip in the pavement, and he had to muster the courage to do so EVERY time. Alina tried to play kick the ball with him and he would look at the ball at his feet and then pick it up and throw it to her. I tried to show him how to kick a ball and he scraped his foot along the ground and moved the ball an inch. When I went to MOPS on Monday I realized that I still have him in the baby room because his peers can out play him in all things physical and he tries to join but is still scared to at times.
I also encountered three nights in a row where he did not eat dinner because he couldn't deal with the texture of the food I made. Now this may not be abnormal, but in context of the Dr. saying he had low muscle tone in his jaws at the start of this adventure....it may not be completely normal. He picks out the textures he doesn't like even if it's a tiny piece...he will spit that out. I don't want my sons diet to consist of overly processed foods.
Today Natalie, our service coordinator and the one who decides if Jasz is to get services or not, came late. While Sherrie and Trina came on time. This gave them time to talk to me alone. Trina told me that she had had an appointment earlier in the day where it did not go how she wanted...and it was also with Natalie.
So, she says, "if you want more time than don't be afraid to ask for it." She also threw in that Jasz is her favorite child to work with. She says she wasn't supposed to tell me that but she just can't help it...he makes her day fun!! So nice to hear. Sherry then piped up and told me that I was her favorite parent. She says, "I see a lot of parents so don't take the complement lightly....you are a good mom and it's really hard to be a good mom!!" Also nice to hear.
So in a way they helped mentally prepare me and let me know it was okay to have more services. They empowered me to ask for what I felt was right for my son.
We went through their whole assessment. On most things he is at level. On social/emotional and spoken language he is around 2.5 years. On gross motor and toileting he is about 6 months behind. After the report was done. Natalie says, "well we completed all our goals so do we have new goals or do you feel good?"
I told her, "Don't get me wrong, I am so happy with where John is today, but my goals were small in the beginning because I hadn't been given much hope. But I spent this weekend really watching my son. He can't do things his peers can. Therefore he can't interact with them on the same level, and it still puts him in a fearful position. I want him to be able to kick a ball to his friends and run on the soccer field. I want that for my son and he isn't there. I also feel like he still has issues with food and textures. I'd like to be able to fix my son a kid-friendly but healthy dinner and have him eat it. I'd also like him to be able to sit with me and read a book. He looks at books, he brings me books to read . But the minute I open the book to read it to him he closes it on me and walks away."
I think I shocked all of them by how well I was able to communicate my sons needs. So Natalie said we should write down some goals. She also mentioned that due to the nature of the program he would be reevaluated on his 2'nd birthday but it wouldn't effect his stay on the program and it wouldn't be a full evaluation. So, Trina and Sherrie were a little unsure of how to proceed. they asked if they were making 3 or 9 month goals..they had assumed he would only be getting 6 months. Natalie says, "no make them for a year."
I would never want to take services from a child who requires them more than my son. However, I want my son to be able to do what his friends can already do. Last week I felt like there must be children worse off than him so if they remove his services...it's okay. Then I remembered Trina telling me how many people continually cancel their appointments with her...not due to illness, they cancel every week. So I figure my son can benefit from the services others refuse to utilize.
So here is the gratefulness part. God has put the right people in our lives. He gave me two good coaches who gave me the strength to trust my own insights. He gave me Dr.'s who helped my son immeasurably with the least amount of invasive testing possible. He put me on a path I went down kicking and screaming, but has since been revealed to me as the right path. He gave us two therapists who love and adore my son and were nearly in tears today with joy at him being able to continue to improve.
"I will instruct you and teach you in the way you should go; I will guide you with My eye." Psalm 32:8
So Thank-you God for all the blessings you have rained down upon this family. May we continue to let you direct our path.