Fragile X Friday - Services

So I will try really hard to keep this from being a rant of a post, but I am so frustrated. These California Budget cuts have been terrible and the Regional Center here is a complete mess, they are changing all of the qualification rules and well, for continuing services it is much harder to keep them. They are still unsure as to how it will all be applied, but they are saying that you have to have a 33.3% Delay in 1 area to qualify for services, if you are under 24 months when services start. If you are over 24 months, then you have to show a 33.3% delay in two areas.

So this is where it is confusing to me, if they make a distinction, then my interpretation is that if one of Holly's Developmental area's are at 33.3% delayed, she should qualify for every service she is already getting. But according to my case manager that is not the case, she will have to qualify for each therapist separately, so for speech, physical therapy, and one of social, cognitive, or fine motor skills she has to show 33.3% delays.

Lets take this a step further, and really define what 33.3% looks like. In about 3 weeks Holly will be 18 months old, that means her development skills need to be scored at 12 months to qualify. If I were to just guess not using any real scoring or assessment, but instead basing it on what other kids can do, I would say she is around 13-14 months in most areas. That has her at a 25-30% delay.

I was discussing this with the Family Therapist and one of Holly's Therapists, and what is most frustrating is that many kids who are at the cusp with more mild delays can benefit the most from therapy. Holly is not a baby who figures things out very quickly on her own, but she does have an amazing ability to learn, that is why early intervention has been so amazing for us. I am very certain that it is because of Holly's therapy that she is doing so well and many of her friends don't even notice the delays, even if I do.

In discussions with her therapists we are pretty sure that if Holly stops therapy she will fall further behind, and then have the needed 33.3% delay and qualify in 6 months, but by then she will have missed out on valuable opportunities to learn and grow, and by the time she is ready for pre-school and turned over to the public school system, she may not be able to be mainstreamed. The though of loosing services is really bad. Why cut off those who are most likely to be helped to get put on track?

PT is the one I think we are most likely to loose, the therapist thinks that we can reduce services but my impression was that we wouldn't be getting them at all if she wasn't delayed enough. Holly still isn't bouncing or jumping, she isn't walking up and down stairs holding onto the hand rail, but she is climbing, trying to do sommersaults and practically running. Tone is still a major issue and why she waddles the way she does, everyone always comments on how cute her walk is, but I know its because she isn't getting proper hip extension, and her shoulders and neck are still super tight. Yet with all the stuff she can do, I would guess she is at about a 15 month level, which is only a 17% delay and if she is less then 20% then according to the case manager we have to start discharge proceedings.

Speech is the one I am most worried about. She has no words yet but I feel like she is on the verge of a break through, she is saying MmMMMmmm, and GaaGaa Like the other day I yelled at a car in front of me and said Go! And she said Ga, like to copy me, We were amazed. She is making the sounds for Up too. But besides this amazing news she has at least 5 functional signs, and the assessment that the Speech Therapist uses counts sign language as "words" so she might end up scoring much higher on that assessment then when we use the help.

I spoke with her about this and shared the following story. Holly and I went to a puppet show, which you will hear about in a few weeks, and in the audience was a cute little girl, who stood up, pointed, and said Doggie! Doggie says woof woof. Everyone thought it was the cutest thing, later I asked how old she was and her mom said 14 months. Fist she pointed, Holly can;t do this, then she Said the word Dog, Holly doesn't really make a Da sound and doesn't really say DaDa is more like GaGa, Third she knew the name of an object and associated a never before seen puppet of a dog to the word or label dog, and finally she could say woof and knows that is the sound a dog makes. None of these are things Holly can do, so it is times like these I get a little discouraged.

Now of course the Speech therapist tried to reassure me and explain why this would be so hard for holly, for example, she doesn't like Dogs, so why would she want to learn the name of it. Second she has delays in motor planning, so how would she be able to stand, point, and talk all at once, even if she did have words. Third she has just begun eating more sophisticated foods, which she doesn't do all the time, and so her mouth muscles are only just getting strong enough to begin to make more sounds and form words. But it is exactly for these reasons that We need to keep our Speech Therapist. yeah, she is motivated to learn a sign, and can sign eat when she is hungry, and more when she wants us to repeat a game, and with prompts signs open to get at a toy, but these are things that she is very motivated to do.

The other thing she said Holly had going against her was her sensory issues, her sensitivity to certain sounds, and her oral aversions make it a lot harder for her to gain actual speech, the notion of having to stop and stand still, which her constant movement can be seen as a sensory seeking activity and then think about how she is moving her mouth and what she wants to say and what the right sounds are, takes a lot of effort and concentration, but with her always on the go, she has to be pretty motivated to want to take that time and to make that effort.

So how do We teach her the other things the kids do and say. The other example I gave her was body parts, and the Speech Therapist indicated that it will be a long time before she will be able to learn those because they are so abstract to her, and she wants to learn more practical things.

So at another therapy session, with the Infant Development Specialist we talked about how Holly will be able to keep her services and she told me that her office has been talking about this a lot, and that they typically try to be optimistic with there reporting so they will often average the scores from the lowest with the highest and rate them somewhere in between.

Well officially that is not the correct way to score the HELP. She may have a dangling 18 or 20 months skill, but be missing a 7 month skill. In Holly's Case she has about 1/2 of the 12 months skills in one area, social, and about 1/2 of the 18 months skills, so the old incorrect way to score would be to average them and say she was at a 15 month level. That might be nice for the parents to hear, but as far as empirical data goes we are looking for mastery, and it is the 9 month level where she has mastered every skill, so that is officially what developmental area she would be scored at.

So she may seemingly be functioning at a higher level with some more sophisticated skills, but officially her mastery level is a lot lower. This may be hard to hear or swallow, but it also means she qualifies with a 33.3% delay and there for gets to keep her therapist.

This reminds me of another story. Last time we went to the Mind Institute was just around Holly's first birthday and they did an assessment called the Kirkland. We were on the tale of her Regional Center Assessments where she was coming up at a 9-10 month level (using the old average scoring way) and feeling very good. Then sitting in a room with the testers they showed holly three cups and nested them, 1, 2, 3. Then took them apart, put them in front of her and said Holly Do. Well, I was not allowed to prompt her, I could not point at the cup, I could not tell her "in" which was her prompt word, nor hand her the "right" cup. Sp she sat there looking at them, chewed on one, maybe banged them on the table, I said, but she knows how to do this, can I tell her in, no the tester responded, and we moved onto the next task, this was marked as a skill she did not have. This was a research study, the testing guidelines are strict, and in order to actually compare subjects you really do need to be this strict. This was a lesson in optimism, and how it "seemed" like she could do a lot of things, but in reality she couldn't.

Its been 6 more months, and she can actually nest 8 buckets on her own, without prompting, and with self correction. This is a super advance skill, but its her favorite toy and she has gotten a lot of practice. So now that I know what mastery looks like, I have stopped myself from saying she can do something because she has done it once with help.

Anyways, this is probably way more then you all wanted to hear about my woes, I am just stressing over Holly loosing her three amazing therapists, and I hope that while I want her to excel, I am sorry to say not too much, because then she won't get the help I know she needs to continue her growth. it is sad that we have a system that forces parents to think this way.