Dec 4, 2008

Ainsley's IFSP

Ainsley has an IFSP meeting to set goals for her therapy through the birth to three center every 6 months. She started in home therapy with them when she was less than 5 months old. It was hard to know then what to focus on. The goals seemed so lofty, completely unattainable, and she could do so little. Even as recently as 6 months ago we set goals on her IFSP that I really thought were ridiculous, I almost blushed when I said them. But it was what I hoped for, for her, so onto the IFSP they went. I had no idea that she would actually meet the majority of those goals, and do it in record time. Some big ones like crawling were met less than three months later. She pulls up to a kneel. Moves in and out of sitting positions. Can recognize some common objects. Will use gestures to convey what she wants (reaches toward things she wants or where she wants to go).

Today's meeting was so positive. Her case manager, her new teacher and her current three therapists all said how impressed they are with her progress. The therapist who works on fine motor skills says that her fine motor skills have advanced from 6 months of age to 13 months of age since September. In fact earlier this week Ainsley was able to use a pincer grasp to pick up a raisin and place it into a small bottle with a 1/2" opening. It's so cool to see her be able to do new things. Not that I really care about placing raisins in bottles but this shows that her limitations are decreasing day by day. Everyone is thrilled with her progress. So much so that we set high goals again for the coming period.

Her PT surprised us by saying that she thinks she's ready to try to learn to climb stairs, cruise furniture, and even take steps between objects like a table and sofa. They will make opportunities for her to work on these things during therapy. I say why not aim high!

We will be working on increased fine motor skills using hand movements in finger plays in an effort to improve her ability to sign.

Her speech therapist will be working on increasing Ainsley's receptive language skills, will continue with PECS, teach her to communicate yes and no with head shaking, among other things.

We plan to place our OT emphasis to getting her to enjoy tasting things without substance such as candy or flavor sprays. I must laugh at that one. This was my idea. I think it's hilarious that I have to do therapy with my child to get her to lick a lollipop. But in all seriousness she hates it. That is not good. Come on! What kid hates candy?! On the other hand she has no typical food aversion. She demands to sit and have dinner with us every night. She wants a plate, cup and spoon and even demands to have table-food on her plate. She plays with it and makes a mess. Occasionally she accidentally gets a taste. I even had to pick two grains of rice out of her mouth the other night. But she didn't gag like she has so many times when a bit of table-food accidentally makes it's way into her mouth. Earlier this week, hoping this was a sign she may be able to eat, I tried yogurt, rice cereal, strained chicken and vegetable, apple sauce, pudding, whip cream, and yes... candy. She would swallow a bite or two but clearly was not enjoying it as she has at times in the past. I can't help but think that with her airway opening up she is protecting herself by not eating. But it's perplexing as she will happily drink water from a cup some days. After reading a great book earlier this year "Secrets of Feeding a Healthy Family" by Ellyn Satter I decided not to push feeding. I'm re-reading the book again and again I feel that what's most important is developing a healthy relationship with eating. Even if that means it takes her much longer to learn to eat. I have always believed that she will eat some day. I don't know when, but if she's anything like our other two kids it'll probably go a lot better when I stop caring and she is in complete control.

When you consider all that Ainsley has had going against her: an improperly and under-formed cerebellum (the area of the brain which controls movement and processing of the senses), she was hospitalized for two months, was strapped into a reflux wedge for many months, had to recover and heal from two major cranial reconstructions in which her entire skull was cut to pieces and replaced, she has an artificial airway and therefore no ability to communicate verbally, had a feeding tube in her nose for 9 months and then a feeding tube surgically placed, has an impairment to her vision, had dislocated hips at birth and was then immobilized for 9 months as they were set back in place, and severe vomiting/reflux until 24 months of age. My God! Isn't it amazing how far she's come?! I am so proud of her!


  1. Yes, I agree - she is amazing! We just had our IFSP meeting a week or so ago. It is amazing to see on paper how much progress they made.

    About the husband and I always joke that if we won the lottery we would hire our ST/OT to come here every day to work on feeding so we don't have to. It's probably one of the things I most hate. Probably for more emotional reasons - and who in the world has that much patience?!?!?!

    Susan, she looks great and I'm really glad to hear about all the progress she's making!


  2. Great work Ainsley! We are proud of you.