Joy's Autism Blog

So this may be my final update about Sanura’s evaluation stuff because I think I’ve shared almost everything I wanted to. Unless something unexpected is in the reports they send me I probably won’t have anything new regarding this. I did want to share how Sanura handled the appointment and what I learned in the process.

When we first told Sanura she was going to be evaluated it was hard. I didn’t expect her to get as upset as she did. She cried and we comforted her and talked about it. In the week leading up to her appointment we prayed together about it and explained who she was going to see and what we would be doing. She didn’t seem nervous. When we got there and we went back to see the social worker and I was telling her everything she got a little emotional and the social worker and I both explained to her why we were talking about her. She said that she didn’t like it. I understood that. We were talking about things that she’s doing that are not necessarily good things to be doing. It was difficult for her. I just hope that we talked with her and explained things enough that it will not have a lasting effect.

This was a huge difference from what I went through with Adrian so it was really eye opening to what some other parents dealing with autism may be experiencing that I never experienced with Adrian. I can say in a couple of aspects it was easier dealing with Adrian’s appointments and diagnosis. It was pretty obvious, really obvious, what was going on with Adrian. His autism signs are pretty classic and to me, the diagnosis was a no-brainer. He had autism, it was clear. Adrian was young and didn’t know what was going on. His first evaluations were around 20 months old…too small to remember or really even care what was going on.

There was all these new concerns with Sanura, my biggest concern was her self esteem. She’s old enough to understand all of what we’re talking about so it made me think, is she going to think they’re something “wrong” with her? Is she going to think that Glen, I, or her teachers don’t like her personality? Is she going to think it’s her fault that she doesn’t have friends? These are all things I didn’t have to worry about with Adrian, at least not at the time. Now that he’s getting a little older I may run into more of these issues. Another thing I was worried about was an under or over diagnosis. Again, it was obvious what was up with Adrian…with Sanura not so much. I didn’t know what they were going to say and I’m still going back and forth in my mind if I should have pushed for the PDD-NOS diagnosis. It’s hard not to second guess yourself as a parent, in fact second guessing is my parenting specialty…I’m the best at it.

Have you ever heard this autism quote?

“The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low- functioning means your assets are ignored.” – Laura Tisoncik

That’s my main goal is to notice my kids deficits and assets and help them along the way.

I met with the people from the Area Education Agency today again so they could tell me their findings from the evaluation. They said that his results may be on the low end because of the fact that he was uncooperative during the evaluation but they did the best with what information they had.

So the finding is that he does qualify for services, the child has to have a delay of at least 25% to qualify for services. Lincoln is about 32 months old. Lincoln scored at a 14 month level for communication, and a 15 month level for cognitive. His other scores were about normal and those had to do with motor skills and social/emotional development. The special needs teacher told me she did see some autism traits in Lincoln. I see a big evaluation in Iowa City for Lincoln in the next 6 months or so. I really just needed some time before we do that though and the important thing is he’s getting help now.

The plan is that I’m going to take him to a special needs school 2 times for week for 30 minutes of the work/play system if you don’t know what that is I’ll explain quickly. It’s basically making the child “work” or you may have heard of it as “teacher time” where they have to complete a task that will help their development and once they’ve completed the task they can have “free” or “play” time as a reward. Here are some notes from when I did some work/play sessions with Adrian in 2006, we did a lot of work/play with Adrian and they still use it at school now. So he will do these sessions twice a week for 30 minutes and if he can tolerate it we will up the time to 45 minute sessions. In fall of this year Lincoln will go to preschool, the same one that Adrian went to, it will be cool if it’s the same teacher!

I feel great, I’m glad we’re getting the ball rolling so quickly. Lincoln’s first session is on this Wednesday.

We were at Sanura’s appointment for 10 hours. 10 hours! 10 hours with four children, one with autism, and one who is a impatient and trouble-making 2 year old. The girls were no problem really, they complained a couple of times about being bored but they were not hard to handle. Here is how we prepared:

So I knew this was going to be a long day because this isn’t our first time going for one of these evaluations. I knew I had to be prepared because we have double the kids we did back then! This is what I packed: our big stroller (not the flimsy umbrella stroller that wouldn’t hold multiple bags and children), a cooler packed with lunch and drinks and those two big items got loaded in the back of the van. Then I took Adrian’s backpack and Nevaeh’s backpack. In Adrian’s I put stuff for the boys: diapers & wipes for Link, an extra set of clothes for each of them just in case, books and toys that they like. In Nevaeh’s backpack I put stuff for the girls: an extra outfit for each of them, books and toys that they like.

No amount of preparation can prevent some issues from arising! For example a kid coloring on their face and saying “Look Dad, chickenpox!”

When we got there we were in the big waiting room and it was stressful! Lincoln and Adrian wanted to run everywhere or leave the waiting area. Glen explained to Adrian that he couldn’t go past “this spot” and it was where some multi-colored carpet squares were. A little while later Adrian ventured very close to the spot that wasn’t to be crossed and Glen said “Adrian don’t run off now.” and to Glen’s surprise Adrian turned around and said “I know Dad!”

Lincoln didn’t want to be held but we couldn’t let him run wild. I tried to take him back with me to one of the meetings and that was a bad, very bad, awful idea. He was screaming and trying to get down, when I did let him down he tried to run away. Glen was irritated because he didn’t want to sit in the waiting room all day with the kids, he wanted to be a part of these meetings but once we were there and going through it I knew that wasn’t going to work out. There is no way I could have paid attention to these people and tell them about Sanura with all those kids in the room.

After my meeting with the social worker she mentioned a family lounge, YES! I’d forgotten about that from our last visit. If you are going to one of these meetings and are having trouble with your children in the waiting room I highly encourage you to inquire about a family lounge and pray that they say they have one! The family lounge we went to was a private room with a door (yay no escaping!) and it also had a table with chairs, a couch, a few chairs, a television, and a computer.

Here are the kids in the family lounge:

Sanura playing on Dad’s phone (electronics were a big help to pass time)

Adrian and Nevaeh playing on the computer:

And Lincoln decided he needed a nap!:

So Glen stayed in the room with the kids almost the whole day and didn’t get to take part in the evaluations. Next time we know if at all possible we need to find a babysitter and go with just the child who has the appointment. If that isn’t possible it will probably just be one of us going which we hate to do but this just wasn’t fair to the kids or Glen.

I have to say going back to this clinic brought back a lot of memories. That’s where Adrian was diagnosed, I cried a lot that day. It was so hard and I didn’t know what his future was going to look like. It brings tears to my eyes to think of how amazingly well he’s doing. At the time I didn’t know if I would ever get to hear him speak, there is so much hope for his future now. It was really special to hear him saying full sentences to us in the place where all the craziness of autism began for us.

I really want to chronicle how are day was yesterday at the evaluation and I’m going to be specific because I am hoping that if someone else has evaluations coming up that this will help them figure out what to expect. So in turn this may get long and cumbersome to some but hopefully will end up being useful to someone.

We got an itinerary when we arrived at the hospital, went to the University of Iowa Center for Disabilities and Development and this is also where Adrian went for his evaluation (the post about Adrian is very detailed and may include information that I can’t yet include in this post because I haven’t received the actual reports and recommendations yet but that post will be coming)

First we saw a social worker, we just told her everything that was happening at school. She listened and took notes and it was a fairly short meeting. Next Sanura was weighed by a nurse and had her vitals taken.

After that we saw the developmental pediatrician, this was a big one. She took a complete family history from me- we have no other family members with an autism spectrum disorder (well except Adrian) on either side of our families to my knowledge. She did an physical examination of Sanura-she’s in good health and there are no physical signs of a genetic disorder but I was highly encouraged to get a blood test on Adrian so they can check for genetic causes of autism which I plan on doing at some point in the near future. She asked Sanura some questions and she said she did see some characteristics that people with autism have.

Next we saw the psychologist-the other big meeting. She worked with Sanura for almost 2 hours. She played games and talked with her and I observed via a two way mirror while I filled out a questionnaire about autism symptoms. She had her play with some dolls as though they were family and kind of make up a story about them. She had Sanura pick 5 random objects out of a bag and make up a story about them. She would tell Sanura stories such as “I’m upset with my sister because she reminds me to do things that I already know I need to do and it gets on my nerves” to see if Sanura would respond with empathy and in an appropriate way.

Then I came back in the room and we talked for quite a while about what was happening at school. Towards the end of our conversation she started going back and forth about whether or not Sanura is showing enough behaviors to indicate PDD-NOS It was a very close call. The psychologist had told me that the doctor was feeling the same way, that it was a close call. She said that Sanura was “right there” on the proverbial line of PDD-NOS and quirky child. She debated and struggled back and forth with whether or not she should diagnose her. I know in a way she wanted to diagnose her so that Sanura could receive services at school but did not want to “over-diagnose” Sanura when it wasn’t necessary. Ultimately she just didn’t feel right about giving her the diagnosis just to receive service when she feels that Sanura is going in the right direction.

Lastly we saw the speech pathologist. Sanura’s language is clear and doesn’t pose any concern as far as how she speaks. The thing that was a concern is-Is she responding appropriately to conversation?- The speech lady showed her pictures of people and she had describe what the people are thinking (example-a man is standing there with his hand on his head and distressed look on his face. You might say something like “he has a headache” or “he’s upset with someone”) Then she gave Sanura a bunch of scenarios like “you want to watch one show on tv and your friend wants to watch another. What is the problem?-Sanura would say the problem-then How can you fix the problem?- and Sanura would have to come up with the resolution to the problem. I haven’t spoken with the speech pathologist yet. She had to score everything up and she’s going to call me on Monday so I’ll hear about it then but almost all of her responses seemed appropriate to me.

So now I need to talk to the teacher. I have a meeting on Wednesday with the teacher, actually I have conferences with all the kids’ teachers on that day. I’m curious to see what they’re going to think about her not receiving a diagnosis. Sometimes it feels as though many of her teachers think that the whole solution to all of Sanura’s “problems” was to get this diagnosis. Well it didn’t happen and they’re going to have to deal with it.

I can’t say it isn’t scary in some ways to not have a diagnosis because she could have gotten more help at school and I know that I probably could have swayed the opinions of the psychologist and doctor enough to get that PDD-NOS diagnosis, in fact, she said to call her if I really feel she needs a diagnosis. But overall I’m happy that she doesn’t need one and I believe she can cope with her quirks and the teachers just need to accept her for who she is and deal with anything that is disruptive to others learning. And of course I am willing to do whatever I need to do to help her teachers handle this.

So coming up in the next few days is going to be a post about what I learned through this (a lot), how Sanura coped with everything, and there will be an update when I receive the actual reports from the evaluation. For now I need to focus on Monday’s appointment to learn what AEA thought about Lincoln during his evaluation.

We just got home a little bit ago and we left the house at 6:45 this morning so it’s about a 10 hour day so this is going to be a short and sweet post and I will write more detailed posts over the next few days about who we saw, what we did, what I learned, and how Sanura handled everything and anything else I can think of.

The highlight of the meeting is that Sanura has some characteristics that are common with people on the autism spectrum BUT Sanura does not have enough characteristics to be diagnosed with anything on the spectrum. She was right on the line of being diagnosed with PDD-NOS but just not quite enough issues to make that diagnosis. We are happy, no diagnosis!

Well tomorrow is the big day, Sanura’s evaluation. It’s been a very long time coming. I called her teacher and talked to her. I asked her if everything was still the same since we spoke last time, she said it was the same. Neither of us said much else and that’s that.

I’m worrying about this appointment, I’m not happy that we have a snow storm coming through. We’re not supposed to get too much but Iowa City is getting 3 to 5 inches of snow. Not terrible but not fun either…Glen will be the one driving because I don’t like driving in the snow. I’ve been very grumpy, snapping at everyone and not pleasant to be around. I guess it’s all just stress. I’m trying to keep a good attitude but I’m losing the battle.

So the plan is:

Today-grocery shop, laundry, clean house, maybe run some clothes to Goodwill to donate-I’ve been trying to declutter some, look up directions to the hospital and plan what time we need to leave, etc.

Tomorrow-get up really early to get on the road to the appointment. Adrian’s lasted from early in the morning and we didn’t get home until after dinner time.

Saturday-Sunday-Nothing but clean and laundry and try to relax.

Monday-Meeting to find out what Lincoln’s results are from his evaluation.

Lincoln seems a lot better today, Glen doesn’t feel very good and Adrian was saying “Sick!” last night at bedtime but seemed fine this morning. I am hoping and praying nobody is sick for this appointment tomorrow. It’s the last thing I need to be trying to deal with. I won’t reschedule. We will just deal with it. It takes months to get in there.

So that sums it up, I hope I can cheer up after some of these evaluation appointments are done.

The ladies just left who did the evaluation. Lincoln was so horrible. It was embarrassing. He was throwing things, hitting them, crying, and he wouldn’t do any of the things they were trying to get him to do. I’m spent. We’re going over the evaluation results next Monday.

So if you’ve missed any bit about Lincoln I’ll give a quick recap. First of all I took him to his two year check up. The doctor was worried about his speech, I really wasn’t yet and I was a little surprised that she was. I got his speech evaluated at the hospital and she said yes he was a bit behind but not enough to be worried, this was last summer, early summer I believe.

Fast forward to about a week or two ago…Lincoln was going for his 2 1/2 year check up. I was getting concerned with his speech and so was Glen so I told the doctor at the checkup, we both agreed he needed another evaluation.

I talked to the lady from AEA today, more of a caseworker not really a therapist or teacher of any kind. She asked me a few basic questions today about what my concerns were. I told her I was worried about his speech-she’s aware that Adrian has autism and that Sanura is being evaluated for possible Aspergers this month.

Lincoln does this thing with his speech, we’ve joked that it’s “Turkey Talk” because it kind of sounds like “gobblegobblegobble” She heard him make that noise when she was here and she said that she has seen tons of kids on the spectrum make that sound and she wouldn’t be surprised if he’s on the spectrum. -insert sick feeling here-

That’s it. Big “real” evaluation to be scheduled tomorrow or at the latest on Friday so we can actually figure this out as far as therapy. He will more than likely qualify she thinks based on his speech delay alone. Our state only does at home therapy until 3 years of age. Then they switch to preschool programs. Lincoln will be 3 in June…hardly enough time to do home therapy. More likely then not my baby will go to preschool next fall. -insert sick feeling here-

Ok that’s it for now. I’m a bit…just upset I guess is the word…