We just completed Nea's new IEP. I went to that meeting by myself. Her Poppa was very sick and the other therapists couldn't make it. It really was a wonderful meeting as we shared information and there were no surprises. What they see at school is what we see at home, every day. Nea's new IEP has some good goals starting the 4th quarter of this school year. It's been exciting to see the changes in her progress and we are ready to continue on! The major issues continue to be social, fine motor and language. In fact, we decided to increase her speech therapy sessions to 90 min a week from 60 min. I think that's a very positive thing for her. OT in the school will now be 30 min a week. She has group OT in the sensory room (swings, ball pits, yoga, fine motor play, etc.) . She still gets private OT and we started a weekly OT project at home as well to help meet her fine motor skills. Overall, I felt that was a balanced OT and Speech program for her. So her weekly schedule looks like this:
Speech therapy- 2 1/2 hrs
OT-90 minutes
School (social/academic)-10.5 hours
That's a whole lot for one little 4 year old! Which brings me to my next topic.....
Nea has an ongoing issue with dry skin. Not just dry skin, but severe "I swear I just put lotion on you 10 minutes ago" dry skin. I finally got her in to see a pediatric dermatologist. He's an amazing guy, very good in his field, highly recommended and a total perfect pedi doctor. I've worked with him professionally as well, and found him to be just as wonderful from a nursing perspective.
When he came into the room, Nea did her usual hide under the chair, whimper a bit and avoid eye contact. He said hello, and then turned his attention to me as we reviewed her history. Nea finally came out of her hiding spot and crawled up into my lap, but buried her face into my neck. He was able to touch her and examine her skin and determined that she has ichythosis vulgaris. It's a genetic mutation that means her skin doesn't lock in moisture. He gave us great ways to deal with the issue (bath every 1-2 days, special creams, etc.) and said all would be well. Nea was still buried in my neck and I said to him, "I'm not sure if your staff explained, but she has Autism." He looked at her quizzically and replied, "Oh, she may be a bit on the spectrum, but I don't know about having Autism....."
My heart sank. Please don't misunderstand. I LOVE this doctor. But it is a startling reminder how far my medical peers have to go in understanding what being on the spectrum actually means. I smiled sweetly and said, "No, actually she's been to a developmental pediatrician and a team of therapists. She in fact does have Autism. What you are seeing here is a year's worth of intense therapy and continued weekly sessions. She's made tons of progress."
The CDC just came out with new stats today. Since the last scientific study, Autism has increased from 1 in 88 children to 1 in 68. That's quite an increase in such a short time. My major hope is that people understand that it's on a spectrum and there's no way you can "fit" someone into a definition of what Autism looks like. If I do nothing else important in my lifetime, it's my hope to help facilitate a change in this understanding.
The article I read today said:
"Notably, the new report found that most children tend to be diagnosed after age 4, despite advances that have made it possible for diagnosis to happen as early as age 2. That figure suggests that too many children are "missing out on the transformative benefits on outcomes that early intervention offers, " Ring said. "Earlier diagnosis has got to be a priority."
Wow. After age 4. I can't imagine where we would be if Nea would JUST be getting diagnosed. The science is showing that early intervention gives the brain an opportunity to "rewire" itself. They have determined there are layers in the brain of an Autistic child that were laid down incorrectly in-utero. That means that somehow there was a genetic misfire as the brain was developing and laid down the bricks to the brain incorrectly in a certain spot. It just so happens that this spot in the brain is responsible for social understanding and language development.
Therapies have been crucial to Nea's success and they started just weeks after her 2nd birthday. If you are reading this and you have a child on the spectrum who was diagnosed after 4, this is NOT an attack on you in any way. We all do the best with the information we have been provided. In 3-5 years there is going to be information out there that I wish I would know right now, TODAY, so that I could help Nea. The point of this is that information is power. Information changes outcomes. The more informed you are, the better decisions you make. That's true in many things in our lives. If you are reading this and you have a family member or have a friend who may have a child on the spectrum...REACH OUT. Get them to an information site. Autism Speaks provides a link to an online quiz that walks a parent through development. At the end of the quiz, they give helpful ideas of what to do with the information. Please, pass this on to anyone who might need it!
We still do not have a cause for Autism, which means we also do not have a cure. Neither one of those facts bothers me, but I know it is maddening to some. I try very hard to live my life in the "now" and finding the answers to those questions doesn't really help us "now". It doesn't provide a guideline for how we should proceed "now". Personally, I'm not waiting around to find the answers. We are going to continue forward with how we know right NOW to help Nea.
If Autism is now 1 in 68 then everyone (parents of NT kids, educators, physicians, nurses, allied health staff, social workers, therapists, etc.) should be getting up to snuff on how a child they come in contact may be affected. You are more likely to come in contact with, work with, be part of the life of an Autistic kid now....more than ever.
*stepping off soap box*
A recent speech therapy session with Diana had her on the phone to me that same day. (I'm still not able to take Nea to therapy sessions, the walk from the lot to the door is too much right now). Diana has been with Nea since day one and knows her very well. Apparently, during the session Nea started pointing to the cabinet in the room and the conversation went like this....
Diana: What do you want, Nea?
Nea: Dora, inside.
Diana: Yes, Dora is inside the cabinet.
Nea: Too high
Diana: I'm not sure how high she is actually.
Nea: Can't reach
Diana: Ok
Nea: Diana, you reach
Diana: What do you want?
Nea: inside, open
.....and on and on and on went this circular conversation. Diana knew exactly what Nea was trying to say, "I want the Dora toy, can you get it out for me." Certainly, most 4 year olds can easily have that conversation but she struggled the entire time. Interestingly enough, when she was doing some pretend play, she had very distinct back and forth conversations with characters she was playing with as she spoke for both of them. So why did the speech therapist call me? Because we have to strongly encourage her to find the words she wants, instead of getting by with the "gist" of the need. Admittedly, we are not great at this. Life happens, and in the interest of getting dinner on the table, or corralling her into the car....I can usually fill in the blanks and figure out what she needs.
But the blanks are the important part. It's the blanks that are the "art" of conversation. Those blanks keep her engaged with peers and allow her more opportunity to fit in, rather than stand out in an odd way. In short, the blanks have to be filled in by her...not us.
