The Ryanator is doing well and so are the rest of us peeps. Our days have been filled with school evaluations, homeschool, speech therapy and regular doctor's appointments, and also BIRTHDAY PARTIES and other social functions on the weekends! It's so nice to be able to finally take the little guy out and to do something as simple as eat in a restaurant or to let him have a piece of cake at a party!!!! The past two months have been a season of firsts for us all over again, much the first year of a baby's life. I remember the first time he was able to go out in public without a mask, first time he was able to eat at a restaurant, first time he was able to read a sight word, first time he played outside again with all the neighborhood kids, and so forth. A truly joyful season of firsts!!!
Unfortunately, this season of firsts has also been punctuated by moments of regression (and aggression, lol). For example, the past few weeks Ryan seems to be reliving his terrible twos and threes, despite being shy of turning six in one month. He's been having tantrums and testing quite a bit. I think it's his way of reestablishing himself in the world after so much time in the hospital without a say-so about the treatment he had to endure. This is all normal for a child his age who has gone through what he's been through.
His school assessments are complete and we had his triennial I.E.P. meeting yesterday at our house (because Ryan is still technically immune compromised and he shouldn't be near a school full of kids). The results were pretty commensurate with the eval that was performed at City of Hope just before he had his radiation therapy, final high dose chemo and transplant. He is functioning primarily in the 36 to 48 month range, instead of 60 months, due to developmental delays that are a result of his treatment and social isolation. They are not sure how much of it is a cognitive side effect from chemotherapy, how much is due to his lack of socialization and ability to develop at a normal pace, and how much is from not being able to get a better reading from the tests due to his inability to focus. His inability to focus has become increasingly apparent the past few weeks, and it is a common side effect from chemotherapy. Getting him to focus & stay focused is sometimes very challenging.
The assessment results/recommendations that we agreed on are to place him in a regular full-day (8 am - 1 pm) kindergarten this fall, with a special one-on-one aide that he will share with one other child. The one-on-one aides are generally used for autistic kids, and while Ryan is not autistic, he qualifies for the aide and we think she/he will be instrumental in helping him to stay focused and to keep up with the rest of the kids in his class this fall. We also think its a good transition for him to be able to go from one-on-one teaching with Teacher Maryl at home to being in a regular classroom. Hopefully by first grade he will be able to be in a classroom setting without a one-on-one aide.
The other options we were presented with were to place him in a special day class with other kids that may have more severe disabilities or to place him in a regular kindergarten class and allow him 30 minutes a day with a resource specialist teacher and a couple of other kids. Both of these options are at opposite sides of the spectrum and we felt he would be best off in the middle with the one-on-one aide. I think its important for him to be around kids his age so that he could start modeling after them. He's been isolated so much and I think that being around other kids will help quite a bit.
Ryan also continues to qualify for speech therapy (120 min/month) and he also qualifies for occupational therapy (120 min/month). The occupational therapist will help him develop his fine motor skills. We'll also be meeting with a resource specialist for 30 minutes per month to make sure that he is making progress and reaching the goals we established for him in a timely manner.
He will have summer school this summer, and I need to make arrangements for it to happen at home. I need a note from his doctor which establishes medical necessity. Another major reason to keep him at home for school this summer is because if he goes to a regular kindergarten class, he won't have a one-on-one aide this summer, and the curriculum will be designed for kids that are finished with kindergarten and headed off to first grade. This won't work for him because we are keeping him in kindergarten a second year so he can be better prepared for what lies ahead and also so he can have the full kindergarten experience.
As far as medical progress is concerned, he is doing well!! He had an appointment at COH last Thursday and Dr. Pawlowska started weaning him off of his anti-rejection medication. That is another first! He has also been scheduled to return every two weeks for follow-up instead of every week (yet another first). These are signs of good progress with his recovery.
That's it for today's update. The reason why this post is called "cats can't talk" is because this morning I was talking with my cat, Smokey, and when Ryan got gist of the conversation he came into my room and butted in & said, "Cats can't talk, Mommy." lol! Duh! He cracks me up. BTW, smartypants, dogs can't talk either!
Thanks for stopping by.
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