Thursday, May 23, 2013

How an Evaluation Shouldn't Go

I found a scrap of paper when I was organizing a shelf the other day. It was dated May 2009, and a closer look quickly told me exactly what I was looking at.

The paper was from a Birth to Three provider following an evaluation for Ethan. The form had an "X" marked in the box that read "Not Eligible to Receive Birth to Three Services." Not Eligible, four months before he received his first diagnosis of moderate to bordering on severe autism.

How does this happen?

There are a series of channels you go through, if you have concerns about your child's development. Normally you would talk to your pediatrician, who may or may not recommend an evaluation by the state's early intervention program, which may lead to a diagnosis, further referrals, and recommendations for therapies if needed.

But what do you do if the system doesn't work the way it should? The answer, in short, is to work around (over, under, through, whatever you need to do) it to get your child the help he or she needs.

In Ethan's case, our first roadblock began with the pediatrician, who was nearing retirement and not what one would call "proactive." He seemed rather to belong to the traditional school of thought that most mothers overreact and most problems can be resolved by "waiting them out."

When I expressed concerns over Ethan and his social development at 15 months and again at 18 months, I was brushed off. He did hand out the MCHAT (an autism red flag checklist) for me to fill out at the second appointment, but due to some (in my opinion) vaguely worded questions, Ethan was marked for only two red flags. Three is what warrants a referral for additional follow-up. And so we were sent on our way to "see how things go" from that time until his two-year appointment.

Except something didn't feel right. This is a common theme in both Ethan's story and so many stories. I don't think this can be emphasized enough -- the cliché is true. Trust your instincts. The worst you can do is err on the side of caution and in time realize your concerns were unfounded, and what's so bad about that, really?

And so a week or so after Ethan's appointment, I made a call on my own to the state's early intervention program, Birth to Three. I'm not sure if this applies to every state, but in ours, parents should know that if your child is under three, you have the right and ability at any time, doctor's referral or not, to call up Birth to Three, express your concerns, and schedule a time for professionals to visit your home and make an assessment.

But what happens when the "professionals" aren't so professional? This brings us to Ethan's Birth to Three evaluation, four years ago now. Wow. We have come a long way.

I remember the cloudy morning so well. Two women showed up at our door. One set up camp on the couch with a laptop and reams of paperwork. She began typing away. The other set out to try to engage Ethan. She had a goodie bag of toys meant to entice him while she gauged his development.

Ethan wasn't having any of this. He didn't want a thing to do with this stranger in our house. He would give her nothing but fleeting glances; would barely respond to any of her requests. I think she made it few just a few items on her checklist. After attempting to coerce him for awhile, the assessor essentially gave up. And this is where I think a crucial mistake was made.

After she had little luck getting Ethan to "perform," the woman started running down her list and asking me to confirm if Ethan could do the various activities. I attempted to answer as accurately as I could, and the result, after everything was tabulated, was not too different from Ethan's visit to the pediatrician. According to their calculations, he had two autism "red flags." Two flags meant he wasn't eligible for additional follow-up from Birth to Three, while three flags would have made him eligible.

I am all for parents being a critical component to the evaluation process. But the fact that Ethan refused to do almost everything asked of him, the fact that his evaluators openly admitted they did not witness him completing most of the tasks on their assessment forms, and were only going by information I provided -- that should have been a third red flag, right there.

Ethan's Birth to Three assessment concluded with a bizarre set of recommendations that in the end served as my own red flag that the whole thing had been close to a farce. I was told that he wasn't eligible for services, and that we should work to engage him more and probably get rid of all his toys with buttons and lights so he wouldn't obsess over them. They scribbled a few names of developmental pediatricians to call, if we still had concerns when he reached 24 months, and they were on their way.


And so, even as I drove to Target a few hours later, on a quest to find Ethan developmentally appropriate toys minus the electronics, I was again thinking something's not right. A few weeks later, I called a developmental pediatrician and basically begged to get Ethan in. Three months later, he was diagnosed.

The lessons here again stand to be repeated. If you think something is wrong, keep pursuing. The experts sadly are not always experts. You don't necessarily have to go through the proper channels to get help for your child. Sometimes you just have to keep persisting.

There's something else to remember. Even in the best of circumstances, getting your child set up with the proper services takes time. Even after Ethan's diagnosis, it took a good two months to really get his therapies going. I am not one of those people to rail over there being a "critical window" early on for children with autism to get therapy that will transform their lives and possibly cure them. I am not saying if you didn't get your child in for services early, you permanently damaged your child's potential.

But I will say this: I began having concerns about Ethan in March. Even with the constant pushing past the naysayers, he did not begin receiving services until late October.

That's a long time. Way too long. And so many kids go so much longer, because their parents have been brushed off, because someone told them to "wait it out," because someone gave them advice that just didn't sit right but they weren't sure if they should speak up.

Do speak up. Do keep pushing. When it comes to your child's developmental issues and finding help, being impatient is for once a very, very good thing.


Unknown said...

Wow. Another spot on blog post. Your comment about the fact that your son wouldn't perform for women and that they could not witness him doing so many things SHOULD have been a third red flag. Add to that parents that are in denial (not that you were but many are!) and that really should have been the elusive third flag.

marion lyon said...

Deb, I just found your blog. What a history of good parenting you have made and are continuing. One of my grandsons I believe is autistic. He avoids people, experience, eye contact and activities. He is in his room almost all of the time...and he is 23 years old. Because both his parents have the same tendencies, although they are more functional, they pulled him out of school at a young age, home schooled him, and describe him as shy. I have seen that he has OCD as well. Anyway, he is intelligent so i have found his first job for him as janitor in our Church. This is going to be a test to see if he realizes how he needs to gain experience for supporting himself in the future.
I think this is going to be a challange for us all.