This is a Fragile X Memory from before our Fragile X diagnosis.
At Monkey’s 12 month check-up his pediatrician was a bit concerned about his lack of babbling. She asked us to set up another check-up for 15 months so that we could gauge his progress. She reassured us and told us not to worry. When his 15 month appointment arrived he had made no progress on his speech and at that point she gave us a referral to our local Early Intervention providers.
There is sometimes a long wait for an EI evaluation but we were seen fairly quickly. The two woman who did the screening were a developmental specialist and a physical therapist. We were very surprised to learn that he had global delays. His speech delay was the most pronounced but he was lagging far enough behind in gross motor and fine motor development to qualify for services there as well.
We quickly set up a schedule of services and soon (what felt like) an army of young woman were traipsing in and out of the house 5 days a week while I was at work. The developmental specialist and the physical therapist who had performed the evaluation became his case manager and his physical therapist, respectively. An occupational therapist and a speech therapist rounded out the team. They were all very nice and Duhdee, in particular, was appreciative of their efforts. Monkey and I were not that happy.
Monkey, with his stranger aversion, was probably the most unhappy with this turn of events. Suddenly there were strange people in and out of our house and they all wanted him to INTERACT. The horror. He spent a lot of time avoiding but we were so fortunate to have a very stable team. Over the 20 months that we received services his team remained nearly intact. He was able to develop bonds with each of his providers over time.
My reaction to all this is interesting to me, in hindsight. I was not grateful for the help. I took every comment or suggestion as an indirect insult. I cannot tell you how many times I thought “Do they think I’m stupid? Maybe they think we keep him in a box when they aren’t around!” I probably even said those things outloud to Duhdee a few times. Prior to receiving his diagnosis I was convinced that we were doing something wrong, Monkey was fine, we were just idiots. We had no business having a child if we couldn’t even teach him to talk, for goodness sake. So all these feelings of being a failure as a mom manifested in a simmering rage at the lovely folks who were helping us and helping him.
I’m not proud of how I felt about the situation, I think (I HOPE) I was more friendly to them than I felt at times. If I was not, I hope they understood that it was not them that I was angry with. I was feeling like a failure, I felt helpless and that came out in anger. Ultimately, I did come to appreciate his team. His developmental specialist, in particular, became very much a part of our inner circle.
After our diagnosis she accompanied us to a myriad of assessments, she spoke the language of the therapists and we felt so better to have her knowledge and support. She also accompanied us to a Coffee Talk presentation and brainstormed with us as to how we could use this new knowledge to improve how the team worked with Monkey. She went so far above and beyond what we could have ever hoped for. She even arranged for her best friend to babysit for us on a few occaisions (she couldn’t do it b/c he was a client.) After he turned 3 she babysat for us just to have a chance to see Monkey, she loves him so much.
At this point I think his entire team has left EI which is a terrible shame. Low pay, too much work and no appreciation from management took their toll and these amazing women have moved on. I know they will go on to use their training and skills to help other people, I’m just sad for all the little kids who won’t get to have the experience Monkey had.
One thought on “Here enters the cavalry…”
I’m happy that your pediatrician at least noticed that he wasn’t doing the things he ‘should have’ been doing. When we’d go to our “well baby checkups” they would ask if Ian is doing this or that. I would say “no”, “no”, “no”. Being a new mom, I figured if something was wrong, they would tell me. NOPE. We eventually left that pediatrician after a couple more negligent episodes on his part. We also no longer did the ‘well baby checkups’ with any of our kids. If they weren’t sick, all was fine. Our current pediatrician worked quickly with Ian’s situation and was the one who suggested we get him tested for FX.
As far as the EI, we’ve had the same PT see all of our children. I wasn’t impressed with our first ST, but adore the one we have now. Ian had a lot more therapists than the other kids. We kinda figured out along the way which were helpful and which stressed my days out. I totally relate to what you said about “Do they think I’m stupid?” and feeling like a failure. I still struggle with feeling like a failure! But I am nicer to doctors and such, realizing that unfortunately most of the ones we work with don’t have a clue about FX. That’s our next goal is to find the ones who can teach us more!
Wow! I should have just blogged an entry of all this! Sorry so long.