Today was Adam's NICU follow up visit. It was a rough morning. The appointment was at 8:15 am, which was rough enough- 2 kids up, dressed, eaten, and in car by 7:45- I also HATE to wake up children. We were done by 11:30.
He saw a doctor (director of NICU), speech, developmental specialist, and a physical therapist. It was a battery of questions and (with the exception of the doctor) they played with him. Really they were tests disguised as play.
I am exhausted.
Emotionally it sucks. It sucks because I watch them ask him to do things that I know he can't do and that other 2 year olds can do. Also some things he can do but didn't feel like it. I also know how hard he is trying and how far he has come. I am so proud of him and know that someday he will be able to do all kinds of things, I cry because he can't and I cry because of how far he has come.
So. He can't talk, but he can sign and uses PECS (I'll explain that another day) He can walk, but he can't jump. He can stack blocks, but only 4. He can identify nouns in books, but not actions. He knows "in" but not under or behind. He knows some colors, but no numbers. He can scribble but only horizontally.
It was rough to watch my kid perform below his age. The therapists discussed their results with me and offered suggestions of things he still needs to do. I was defensive. I explained how far he has come in 2 years and how hard we have worked with him and taught him and fought with doctors and hunted specialists and traveled to other states and had 5 surgeries and 10 hospital stays- not including the 9 weeks in the hospital with the trach.
He saw a doctor (director of NICU), speech, developmental specialist, and a physical therapist. It was a battery of questions and (with the exception of the doctor) they played with him. Really they were tests disguised as play.
I am exhausted.
Emotionally it sucks. It sucks because I watch them ask him to do things that I know he can't do and that other 2 year olds can do. Also some things he can do but didn't feel like it. I also know how hard he is trying and how far he has come. I am so proud of him and know that someday he will be able to do all kinds of things, I cry because he can't and I cry because of how far he has come.
So. He can't talk, but he can sign and uses PECS (I'll explain that another day) He can walk, but he can't jump. He can stack blocks, but only 4. He can identify nouns in books, but not actions. He knows "in" but not under or behind. He knows some colors, but no numbers. He can scribble but only horizontally.
It was rough to watch my kid perform below his age. The therapists discussed their results with me and offered suggestions of things he still needs to do. I was defensive. I explained how far he has come in 2 years and how hard we have worked with him and taught him and fought with doctors and hunted specialists and traveled to other states and had 5 surgeries and 10 hospital stays- not including the 9 weeks in the hospital with the trach.
I got teary in the car ride home because I was so proud of all he could do.
For one of the tests the woman gave Adam a string of beads and a small narrow container. She asked him to put the beaded necklace into the container. The container was pointed on the bottom and narrow. He tried to put it in, then he tried to put the container down to use two hands, the container tipped over (it was pointed on bottom), he picked it up and tried it again. Then he put the container on its side and tried to shove the beads in, but dropped the necklace. He picked it up and tried again. Then he dropped the container. He picked it up and tried again. It went on for several minutes. The tester commented that most kids tested have given up by now. Adam was still trying. Finally with no help he put the container on the side and held it with one hand and used part of one hand and the other hand and got the necklace in. It was frustrating to watch, but amazing to see his problem solving skills working and even more amazing to me was that it was a concrete demonstration of his tenacity. That personality trait is what keeps him going and surviving.
"Don't you sit down on that step cause you finds its kinder hard" - from Mother to Son by Langston Hughes
Alaina,
ReplyDeleteMy whole career has been in special education with more than the last half of it in a public shool district preschool and also part time as an EI developmental interventionist or DI. Every parent, educator/CST member and healthcare provider working with children and families should read your blog.
I have found a blog that may be useful to you. A colleague of mine and I think this is worth your limited free time. I also know that the therapist answers emails and responds to specific questions with much thought and insight. The name of the blog is Teach Me To Talk com. The therapist is very knowledgeable and experienced working with very young children with speech delays. Since the trach is gone, I hope you find this site worthwhile.
My best regards to you and your lovely family,
Kathy Caviston (Julie's mom)
P.S. You still look like a movie star.
Mrs Caviston, Thanks so much, please pass my blog on- i wish there were more parent mentor/connections for me out there. Sometimes we are just so busy with a disabled child there is no time to connect, the isolation is rough and we are the ones who need it most. I will check out the blog you recomend, thanks for everything xo
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