Thursday, March 5, 2009

#2 How easy/difficult was it to get the evaluations your child needed for a diagnosis?

What evaluations were done and by whom? How accurate and well-performed do you think the evaluations were?

In our case, I took Jack to a regular pediatrician (who turned out to be a student!) at the Wright Patterson AFB hospital and explained very calmly what we were concerned about and what his teacher was concerned about--I thought about what I was going to say ahead of time and made sure that I was clear and concise. At this point, I had no idea that autism would be a possibility, but in retrospect, I said all the right things to get the doctor's attention. That doctor asked me to wait and brought the developmental pediatrican into the discussion that day, which I felt was extremely responsive. The developmental pediatrician, Dr. Z, said he would work Jack into his schedule as quickly as possible; he saw Jack two weeks later for an initial evaluation. It took just three months to get all the evals done: audiology, speech, occupational therapy, child psychology. At the time, Dr. Z didn't have the testing materials for the ADOS, so we went downtown to Dayton Children's, where the child psych did the ADOS and nonverbal IQ test.

I felt all the tests except the speech eval were quite thorough and well done. The speech eval was done first and every specialist who saw it (including at the public school!) rolled their eyes at it. It basically said nothing. All the other therapists and the child psychologist were extremely good at explaining the results of their evaluations. Once Jack got into treatment, his new speech therapist did a very thorough evaluation so we had a much better idea of where Jack stood.

Much of our luck came from cancellations (speech and child psych would have taken MUCH longer, but I jumped when cancellations occurred) and the fact that Dr. Z knew how to pull strings and did so on our behalf. We were getting ready to move to Abilene, TX, at the time, but the doctor said services were better in Ohio, so he and my husband signed us up for the Air Force's Exceptional Family Member Program, which ensures that families with special needs are stationed in places where those needs are met. You can read the details in my essay HERE, if you're interested. (Scroll down a bit to get to the part about Jack's diagnosis.)

Jack's final diagnosis was Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS, mildly affected. By the time the diagnosis came through, George and I were both convinced that it would be PDD-NOS anyway, so we were not surprised.

Note: The public schools did not get involved until we had a diagnosis, mainly because of the timing of summer break.


maiahs_momma said...

the evaluation took some doing to get a referral for, since our son is so high functioning...the doctor's I did see told me it was all in my head and he was "playing us". Yeah, don't say that to a parent...won't be received well! We took our son off his diet (gluten free), about 2 days before the evaluation. Even though we did that he had a good day and acted like he usually does on his diet. But the other key is that they played with things he loved: balloons, balls, puzzles...all things he uses for calming tools. In the end we were told to "wait and see" :(, because they didn't want to say he had Autism or not!
I would have to say that as parents we were heard, but we weren't actually listened too especially since we are our son's experts. They wouldn't let you say anything much, and tried to keep you on the hundreds of questions they asked you. That was hard, since it seemed they already had their mind made up when we walked through the door.
We had to travel out of province to be seen by another pediatric doctor, who was quite concerned about our son. We are now waiting to go see a pediatric neurologist to get EEG done, as well as a battery of other tests. Being in "limbo" is hard, because there aren't support groups for those of us who don't have a diagnosis, but strongly feel that our son has Asperger's or something on the Autism spectrum.


Susan Raihala said...

Catherine, it's astounding to me how, even with your background in early childhood education, the professionals can still dismiss your concerns so easily. I hope that the ped neurologist can get some answers for you. Why do they want the EEG? Has your son had any siezures?

For those reading who may not know, children on the autism spectrum are much more likely to have at least one siezure before age 18 than typical children.

Heather P. said...

We don't currently have a diagnosis for our daughter, which I think is probably the hardest part for me. I just want to know... Is it or isn't it? Why do we have to wait and see whether or not her behavioral issues pervade? Why can't you put your finger on it, so I can make sure my daughter is receiving the right services?

We were originally evaluated back in October 2007 for a possible speech delay. Our Early Intervention folks never mentioned Autism to us in the 6 months that they worked with her before turning her over to the school system (her IEP states that she's currently receiving services for speech delay). It wasn't until the end that they wanted her to be evaluated by their psychologist (who administered the ADOS and CARS(?) tests). She said that our daughter had some Autistic traits, but not enough at this point to make any kind of diagnosis (and that it may not be fully apparent until she's 6 years old).

I kind of feel like they tip-toed around the situation instead of just coming out and saying hey, we think there might be more going on with your DD than we originally thought. Even now, almost a year and a half later since it all began, we still don't know where she falls... Is it Autism or ADHD or...? We've been to our pediatrician, who thinks she's fine- it's behavioral. We've been to a pediatric neurologist, who doesn't feel that ASD or Autism is the right diagnosis for her- it's a language problem. We have her preschool teachers telling us that she shouldn't be in the MINC classes (which are classes in our county for children who have Autism or other disabilities which might require more one-on-one teaching). No one is on the same page, and it's sooooo frustrating. And lonely. And isolating.

Sorry for venting...

Susan Raihala said...

Heather P., limbo stinks. But you are DEFINITELY not alone. Read Catherine's comments on this post and the previous one. She's in much the same boat as you. And you both are not alone, either!

One thing our child psychologist said may apply to your situation, too. She told us to put Jack in as many "typical structured social situations" as we could. According to her, high-functioning children whose down-time isn't developmentally productive (Jack played repetitively and didn't engage with others) should have more structure to, in essence, force that engagement. That child psychologist is a big believer in high-functioning kids with autism doing what "normal" kids do...only more of it and with supervision as needed. So we have had Jack in two schools for three years (public inclusion classes and private typical classes through our church), double-dipping therapy in the schools and privately, and in extra-curricular activities with typical kids. He's a year behind his age group at the church preschool and in gymnastics...a more appropriate environment given his social delays. Academically, though, he's doing well in kindergarten.

I guess what I'm saying is that you have more power to do constructive things now than you might think. The book Overcoming Autism may help, too, if you haven't already read it. It's a very comforting and level-headed book that is practical, too. Many thanks to my friend Karen D for passing it on to me.

I hope this helps, and also hope you can get the services your daughter needs. Please keep us posted.

And no need to apologize for venting. That's what this blog is for!

Blessings, Susan

tinamarie said...

Waiting for a diagnosis and trying to get one is so hard. Our son started the Birth To 3 Program when he was 18 months old. He wasn't talking or babbling at all. THey kept telling me Tony was just a little behind. Yeah right. We knew he was majorly behind.
When Tony was 2 1/2 years old we moved to a small town outside of Madison WI. The Birth To 3 Program down there was so much better! They knew when they evaluated him before his 3rd birthday that something was not right at all. The entered him into the Spec Ed Early Childhood 6 months ealry because he was so delayed in some areas. About 4 months after he started school (he went 4 days a week for morning classes) his teacher asked me to stop in and talk to her. She then told me she suspected he had Autism. She then told me to call his doctor and get a referral as soon as possible. I get a referral that day, but when I called the clinic I told there was a 4 month waiting period. I began to cry a bit and she started asking me about my insurance. Then she found I worked at the hospital the clinic was in and had excellent insurance that she miraculously found an opening for the following week. I truly felt that was not fair to other children that have to wait for those appointments but I took it. I did voice my thoughts afterward to the clinic.
Tony's teacher was a true blessing. She tested Tony in all areas and wrote a 6 page letter to the doctor about his skills and delays. I still have that copy if it would help your research I can email it to you.
His teacher ALSO got a sub that day and came to the appointment with me and Tony. My husband and I were separated at the time. At the end of the appointment I still remember the words the doctors said to me - "Tony has Autism and there is no cure. He may never talk. Apply for Katie Beckett Medicaid and start looking for a good school for when he turns 5."
She gave me a little book and that was it.

Katie Beckett Medicaid is a program we have her in Wisconsin. It is a medicaid for disabled children and they do cover Autism. They pay everything our insurance does not cover.

Anonymous said...

We lucked out numerous times with cancellations. Within two weeks of calling our Developmental Evaluation Center in Jan. 2002 in Raleigh, NC, we had an appointment for a full screening (hearing/speech/OT/Vineland etc.). Here they said he was "at risk for autism spectrum disorder." In the next few months, we felt we wanted a more definitive diagnosis than "at risk for...." so pursued a full evaluation through our local TEACCH center; and once again got incredibly lucky to have an initial eval in March followed by a full eval in June of 2002. Here he did receive the diagnosis of autism. We got a faster track than most people we know, so were very thankful for that. However though it seemed tough for awhile not knowing for sure (though we certainly felt it was very likely he had autism), the hardest part was what to do once we had the diagnosis. I think this is the most difficult part of an autism diagnosis: all the anecdotal stuff out there of what will be best for your child in terms of helping him/her.....Nancy

Susan Raihala said...

Nancy, I totally agree that the hardest part for us has been sifting through all the treatments and anecdotal stuff. I think that's the part that hits most parents hardest because we want to DO something, but feeling confident about our decisions is almost impossible. Part of the intent of my book is to help parents navigate those difficult waters; I'm feeling so much more secure and confident now than I did three years ago. Learning to go with the flow and pay attention to our son, rather than the marketing and hype, has helped. I'm glad you had a fairly quick DX, too.

Tina Marie, thanks for sharing your story. I would love to see your son's teacher's letter, if you are comfortable sending it. I will not use it or quote from it without your written permission. Your son got an awesome teacher who was willing to go the extra mile. It's amazing how grace comes to our children in such wonderful ways!

As for the appointment situation, having dealt with military medicine for 20 years, I firmly believe that a few tears, asking politely for someone's supervisor, or filing polite but formal complaints will get a person what they need most of the time. The problem is, we shouldn't have to "work" the system; the system should "work" for us.

Anonymous said...

It took us many, many months to finally get in to see the Dev. Ped. Because we are Tricare Prime, we must be seen at a MTF, if there is a provider available. The appt was made in February, we didn't get in until July. I asked about seeing another provider, but was told that the wait was just as long. We have ONE Dev Ped in the DC metro area available to us - that is just substandard. Then, going through the EFMP drills was another nightmare. My husband's command LOST, yes, LOST the paperwork. Thankfully I was following through and we realized the paperwork was not there somewhat early on and they were able to locate the missing files. As a result of that, our approval was sent through RUSH. We are enrolled in the ECHO program as well. We started OT wait in March of last year and PK had his first OT evaluation in October with his first therapy session in January. We are currently going through the same thing with the ABA. I'm hoping though that they can get him in sooner, we are being quoted May.

Anonymous said...

We have struggled to get a diagnosis. We are in sppech therapy and OT she has had an iep done and is in a thre year old program. I am told she has autisic tendancys but is "high Functioning" We are waiting to see a psychiatrist now. The thing I found most difficult was her speech delay was a year and a half behind, and the waiting list for speech in our are was a year. So I drover her over an hour away twice a week to get her started. I figured the tantrums may subside if we could get her to communicate with us.
Kristina Seymour