Wednesday, December 31, 2008

The Initial Evaluations: A How-To Guide

Ok, when I started to suspect that something “wasn’t quite right” with Jonathan’s development, I knew that people would think I was crazy. Or paranoid. Or both. And with WAAAY to many years of education in child development, I was a prime candidate for the “Looking for Trouble” award. But when that naggy little voice just would not stop, I knew I had to have him evaluated. At the very least professionals could tell me I was crazy and paranoid.

So, what do you do when you have concerns about your child’s development? Whom do you turn to?

Good Question! Not that I have any answers, but here is what I did.

1. Emailed my old boss. Just for the record, I have a PhD in Developmental Psychology. Yeah, I know… see what I mean about too much education? My specialty is neonatal development, but while I was in school I worked as a clinical coordinator for an Early Intervention/Assessment Clinic for Autism. So my fears were not based on NOTHING. I emailed him my observations and concerns. He agreed I had reason to be concerned and recommended getting him evaluated by a psychologist or developmental pediatrician.

2. Emailed our regular pediatrician. Great guy, but he doesn’t check his email fast enough. I had already moved on to step 3. Lucky for me, he concurred with my concerns and recommended my step 3… which I had already done. Yah me!

3. Made an appointment with a Developmental Pediatrician at Children’s Hospital. Since I work there, it was easy for me to find one. Alas, it was April and the earlist appointment I could get was end of June. Not gonna fly, brother! TIP: If there is a long wait to get an appointment with any specialist, ask if there is a waiting list. Make your appointment, but then get on that waiting list and if you get that call… GO! Drop everything! Just GO! I did, and we got moved up to the middle of May! Yah us!

4. Made an appointment with a Speech Language Pathologist. I made it at the same time I made the Developmental Pediatrician appointment. We had that evaluation at the beginning of May.

5. Made an audiologist appointment. I mean, really…. What a simple answer if he couldn’t hear. (He can).

6. Made an appointment with Early Intervention. Every state is different, but ours is a Birth to Three program through the county. They did an initial screening, and three different evaluations. It was VERY through! We started this process at the beginning of May and we were done by the end of May. Let’s just say April and May were very tough months!

So here are my recommendations to anyone who has concerns about their child’s development:

Like any good high school cheerleader could tell you: BE AGGRESSIVE… BE -BE AGGRESSIVE!

Talk to your pediatrician first. They can often refer you to the right professionals in your area. We used a developmental pediatrician, but a pediatric psychologist would do well too. Even some school psychologists have the experience to evaluate young children. But ask questions about qualifications!

Call your local Birth-To-Three agency. If you aren’t sure how to locate one, call the school district. They should be able to refer you. Their services are free or low cost, and can often be done quickly.

Consider getting an evaluation from a Speech Language Pathologist. Sometimes you can get in quicker and often these evaluations are covered by insurance.

Don’t expect solid answers. Seriously. We still are not 100% sure what is going on with Jonathan. BUT… and here is the kicker… we have him in therapy and are learning how best to help him learn. It is a starting point. The evaluations and opinions are going to change. As we learn more about Jonathan, we get more confident in our feelings about his needs and are able to be advocates for him.


Monday, December 29, 2008

Our Story in a Nutshell

Jonathan at 7 months

How to begin?

Girl meets Boy. Girl and Boy date long distance for a year. Girl quits job at University and moves to Texas (eekk!) to be with boy. They get married. She becomes a neonatal nurse and drags him to Minnesota (ahhhh). They buy house and settle in. And, then comes Jonathan!

In many ways this is a journal about Jonathan. Born February 2007, the long-awaited-for baby was a complete blessing for us. Still is. And as he is growing and changing, so are we. This journal is meant to detail the joys and struggles we have had as Jonathan grows. Jonathan has presented us with so many life-lessons, and we are continuing to learn as we go.

Ok, I will admit it. I was ready to be done being pregnant! I mean, you can only go so long without being able to lay on your back. Or go an hour without peeing. I was huge in only the way a 5 ft 2 in woman can be with an 8 lb 4 oz baby boy in her belly. It wasn't pretty. So, we induced on my due date. And, after 12 hours of labor, 3 hours of pushing, and one vacuum, TA-DA... Jonathan Arrived!!

He was beautiful from day one. Still is. The kind of pretty that makes people in Target stop me to comment on him. And while Dan and I were completely and utterly exhausted for a full year, we have never known a love more profound than him.

When Jonathan turned one year, my paranoid-mommy-with-too-much-education came into full force. Don't get me wrong.... I was as neurotic as any new mommy. But Jonathan's communication skills were a big fat zero. No pointing, no waving, no jargon, no words. No gestures of any kind. His engagement with us was inconsistant at best. Some days he was all smiles and interaction and eye contact. Other days, it was a struggle to get him to "be" with us. Of course, my concern was the "big A". But I waited. He was still struggling to learn to walk, and I thought maybe we would see more progress after he hit that milestone. But, by 14 months he was walking (like a drunk... but walking!) and there was still zero progress in the communication department.

So, I hit the ground running. I contacted old collegues. I emailed our pediatrician. I made appointments at Children's for hearing screenings and a Developmental Pediatrician. I called my old work and made appointments with a Speech Langauge Pathologist for an evaluation. I contacted Early Intervention in our county for a screening. I was a madwoman. Alas, while many waiting lists existed, I was persistant and was able to get the initial screenings done by the time Jonathan was 16 months.

Alas, the news was not good. At 15 months Jonathan's language development was moderately to severely delayed. The Developmental Pediatrician was concerned about possible Dyspraxia. The Early Intervention professionals were concerned about Autism. I cried. And cried. And freaked out. And cried.

However, that was then. This is now. He is 22 months, still delayed, but making progress every day. We still don't have a definitative diagnosis. The Developmental Pediatrician still thinks dyspraxia. But this next year will be an important year for determining that. As time has gone on and we have worked with all the professionals (Speech Therapy, OT, Early Intervetion, etc), I feel more and more confident that... regardless of the outcome... Jonathan is far to happy and social to let this little blip in the road be that big a deal.

I will continue to use this "blog" to inform and educate others about language delays. And, I will record our journey. Hopefully you will find something in it to help or inspire! Or at least not bore you!!!



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