Musings of a Marfan Mom



May 19th was a pretty momentous day in our household. The Menininho has been receiving speech therapy for 10 months now, at first once a week, then twice a week since February. All along he’s had the same speech therapist. Even when M wasn’t really bonding with anyone, Mark & myself included, he really enjoyed this therapist. In the past couple of months M has begun to refer to him as “Too-Tee” (teacher) and later that changed to the question “Tee-Tah commin?”

The 19th was “Tee-Tah’s” last day; he has since moved away. What made the day momentous, however, was that it was also M’s last day. He has tested out of speech therapy! We had anticipated that he probably wouldn’t meet the Early Start criteria but still have a speech delay, and then Mark & I would decide whether it was enough of a delay to warrant a private therapist, or whether his needs would sufficiently be met at his therapy preschool program. We were pleasantly surprised to learn that at least on the REEL, M tested at age level in both receptive and expressive language! The REEL isn’t the best assessment tool so M probably still has a small delay in expressive language, but it’s small.

Although we’ve had this good news for a couple weeks now, Mark & I are still pinching ourselves. 6 months ago, M was still classified as nonverbal. We thought his goal of learning 20 object words was a big stretch. Now, he probably has 80 words! People have asked me what I think made the difference, and I credit it to a few things.

1) The speech therapist once told me he believes our timing in getting M in for therapy at 16 months played a big role. If we’d waited, it was our therapist’s opinion that M would not have progressed on his own and might well not be verbal now.
2) We have fought for increased services. Initially we were given one hour of speech therapy a week. Within 2 months we’d been able to add 6 hours a week of school, and in January we added an additional hour of speech therapy a week. We supplemented therapy briefly at another hospital out of pocket as well.
3) M had a speech therapist he connected with. Mark & I are so grateful to “Tee-Tah” for going above and beyond with M. It makes a difference when therapists actually care about your child and I really believe the kids can sense that. M is still asking for his therapist, even while we were on vacation.
4) Luck.

There is no guarantee that early intervention will make your child talk; obviously speech delays and autism are more complicated than that. However, NOT getting early intervention can prevent your child from getting back on track. If I could impart something to you, it is this: Go with your instinct. If you feel something is wrong, go looking for answers. Most pediatricians are NOT trained to recognize these kinds of delays. Do not wait until age 2 or 3 (waaaay too many pediatricians advise this). Each state in the USA offers early intervention (the name may differ) and they will do a FREE evaluation of your child. You don’t need a referral from your pediatrician – just look up the office and call. Don’t be afraid to question the level of services, either.

I hope those of you reading this don’t ever need early interventions for your children but if you do, take advantage of the program! I am so glad that we are!

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  1. That is such awesome news!


  2. I’m SO glad that things are going so well! YAY! :)


  3. My favorite word in his repertoire is Nonni !


  4. Wow, that’s great progress and so good to read. :)


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