Last week I had a meeting with Fox's Early Intervention coordinator to discuss adding the speech services that CHOP recommended. Their report suggested 3 or 4 hours of speech services a week, but Early Intervention would only agree to 2... and that was only after I really pressed them for it. At this point I feel as though speech is the top area he needs help with, as he still doesn't babble at all, so it's a little frustrating to only be getting 2 hours a week. I'm alright with it for now, but if after a while I feel it isn't enough I will definitely do everything I can to get him more. Lately people have asked me what the hardest part about Fox's diagnosis has been and what I'm the most worried about. The answer is easy... I'm worried that he may never talk. That he'll never be able to say "I'm Fox". That he'll never call me "Mommy". That I'll never hear him say "I love you". It's overwhelming to even start to think about, so I try not to. I'm doing the very best I can to not look too far into the future... I know I have to just cherish every day and enjoy every moment... but some days it's easier said than done.
xo Betsy
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7 months ago
4 comments:
Betsy, hang in there!! Fox wil speak and continue to be an advocate for him. Also, look into what your insurance may cover. I know families who do both private (through insurance) and early intervention. And to give you a positive story - one of Elizabeth's good friends in her kindergarten class this past year has a diagnosis of PDD and didn't start talking until he was 3. I would never have known, since he talked the whole time he was at our house for a playdate!
Speech is the hardest to get by far! We do both early intervention and private- B gets 2 privates a week and one early intervention. See what your insurance will cover.
I know it's frustrating but that's great that they'll provide EI for such a young child. Where I live, they don't start speech therapy until 2 years old.
EI is different than a medical model. The idea is that they teach you what to do and you work directly with the child. It's not realistic though, it's just an excuse to provide the minimum services. I mean, how can anyone hold down a job AND work with their child every day? I get only an hour or so a day with my boys and we're rushing around to get them to day care or to get them ready for bed. I don't have time to give my son PT or OT myself. That's what the therapist is for!
Betsy, Fox has the most important thing any baby with autism needs...a relentless, smart and loving advocate who is also his Mommy. You identified his condition early and have been pushing for everything available to him ever since. I am very proud of you, Betsy.
Love, Farrell
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