Thursday, June 9, 2016

Twin toddlers OT and speech IEP

Well we've been headed down this road for a while. The Help Me Grow program ends at age 3 and the IEP program takes over. IEP means "Individualized Education Program" which is basically a formal process for the school to evaluate and treat kids with any kind of special needs. This can range from very severe to very minor issues.

We took Brooklyn and Bailey in for an evaluation in May. My concern was that Bailey would qualify and Brooklyn would not. Obviously, I would prefer neither kid is on an IEP, but if only Bailey was, I was really nervous about Brooklyn being left behind at daycare and Bailey attending preschool for two hours by herself. The preschool program has "typical peers" (aka kids without any issues) and then kids with special needs, but the typical peers are chosen in December for the following year and we did not even think to have the kids entered into that. My plan was to just keep them in daycare till kindergarten and skip preschool altogether. Things change though!

Anyway so the evaluation. I thought there was no way the girls would split up from Darren and I as they are very shy and really don't like strangers. But the preschool teacher won them over instantly with promises of toys and the girls followed him into the room without a second glance back. We sat outside the classroom on tiny preschool chairs and filled out endless paperwork. Times two.

After the evaluation, we met briefly with the school psychologist and school speech and language pathologist (SLP). They said they had some concerns and would like to set up the formal meeting to go over the ETR (evaluation team report) and discuss if an IEP is needed.

Fast forward two weeks.

So both kids quality for an IEP for both speech and OT for fine motor skills. Did we know or have any concerns about their fine motor skills? Nope, that totally flew under the radar for me. Now that it's been brought up though, I can see their point.

For Bailey, they have concerns about her motor skills to produce sounds and that she is basically unintelligible. She'll be getting one on one speech for a half hour each week. Her fine motor skills were slightly delayed she she'll be getting extra help in a group setting each week. As the school's SLP was discussing her speech delays, I asked him if he thought she had apraxia of speech. This has been a concern of mine for a while. Here is the clinical definition:

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. -

The SLP said he's not ready to diagnose her with this, but it is something he's considering. I discussed it with the speech therapist Bailey sees at the Cleveland Clinic but she seemed to brush it off. Will bring it up again. I go back and forth with it. I think it fits with Bailey's issues pretty well but some of the symptoms - being clumsy and having trouble eating/not like things in your mouth like a tooth brush - don't fit at all. On the flipside, it also calls out issues with fine motor development and she (apparently) does have this. Time will tell. I feel like she is making so much progress but I am noticing people besides Darren, me and our daycare provider have difficulty understanding her. She is the HAPPIEST kid in the world and it breaks my heart that she has such a hard time communicating.

As for Brooklyn, on paper she doesn't have a speech problem. We took her into Cleveland Clinic and she passed. They did not think she needed speech therapy. It's been hard for me to explain the issue with Brooklyn because she CAN talk, she just doesn't. So it was a huge relief when on her IEP that they were able to understand the issue. In their words - she isn't using her speech very functionally. Yes, that is the phrase I needed to explain it! During the one on one evaluation she was able to use words and sentences, etc but in a group setting she clammed up and wouldn't speak, or would barely utter a whisper. She wouldn't ask for things and wouldn't answer anyone. So her treatment will be in a group setting and have more of a social focus. She also scored extremely poor on the fine motor skills (again, I had no idea) so she'll be getting one on one help with this.

The team also had a lot of social concerns about the girls. This did not surprise us. They play so well with each other and us but really don't like people. If another kid comes on the playground they will often freeze. So that's another thing the school will work on with them both.

The other bomb that got dropped during the meeting was the plan to put the girls in separate classes. My mama bear instincts were going full force like absolutely not! They countered with the they are their own person argument. (Trust me, I am well aware of this.) Totally on board with separating them for Kindergarten and beyond. My concerns are that at age 3 that seems soooo young when they are already so shy and don't seem to like other people. They IEP team, however, said that twins with social/speech issues really do so much better being separated so I agreed to it. This makes me a little nervous, but I am hoping each girl will do great and progress quicker. Plus it's only two hours a day.

What's slightly awkward is that the preschool is two hours a day. The kids with special needs are eligible for busing but only within our city. Our daycare is in the neighboring city by seven blocks. No exceptions though. We are lucky that Darren works from home and while not an ideal plan, he can drive them back to daycare after the bus drops them off. I think it's important enough for them to get help.

It was a lot of information crammed into a two hour session. I am really glad the girls will be getting services but also feeling like shitty mom because they are so behind in speech and fine motor. All those guilty mom thoughts rise up like if I wasn't working and was home with them all day or if we read more books or I should have had more fine motor activities and toys for them. And then I think about how ridiculous this all is. It's not like my mom or grandma had 18 fine motor activities from Pinterest laid out each morning. Also, Morgan is doing awesome. She already says: kitty, cheese, down, mom, dad, no, uh oh, oh dear, hi, bye, i love you, and a few more keep coming every couple days. And she's 13 months. Which is crazy early. She has said some sentences too like "hi dad" and "bye dear." So perhaps it's not "shitty mom" and B&B really just have some issues. I'm sure being preemie has contributed some to this, which also packs on the mom guilt. If only I could have stayed pregnant for a couple more weeks, would they have these issues? I don't know. It's not helpful to think that way, but sometimes it can't be helped.

In other news, Bailey is also getting her tonsils and adenoids out so perhaps that will help some with the speech (they were very, very enlarged. She snores like a grown man and has sleep apnea).

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