Thursday, September 9, 2010

Breaking up is hard to do!

So, what happens when you don’t feel like you and your child’s doctor or therapists are on the same page? You break up with them! It sounds so simple but it’s not that easy.

Not every doctor will be on the same page as you with your child’s care. As a parent of special needs kids, you are going to be your child’s best advocate. If you are uncomfortable with a doctor search, ask others, call your insurance even to get a referral for a new doctor.

There have been plenty of times in Iron Man’s short little life where we were not happy with the care and what the doctors were saying. The first Neurologist we saw dismissed my questions when I asked about his development. Iron Man was 11 months and just starting to crawl and was nonverbal. I was told I was over-reacting. He had a seizure and the hospital threw away the orders for his 24 hour EEG. We decided to make a formal complaint against the hospital when they had us wait for several hours and then get upset when the 12 month old little one didn’t want to stay still to have the leads on his head.

The second Neurologist we saw when he was 15 months old saw him for about 45 minutes and uttered these words to us “He’s autistic. We’ll see you in 2 months for a follow up on the MRI on his brain.” then she walked out of the room! Needless to say the husband and I were in shock but made the 2 month follow up appointment as we were told to do. We showed up and she forgot who we were, why we were there, and lost our only copy of Iron Man’s MRI scan that his eye doctor did. My husband and I walked out of that appointment and decided to not go back. We ended up deciding to go to yet a third neurologist. We’re going to be headed back there next week.

As far as the therapists that work with your children? There are a few options. If your child is still in Early Intervention, you can call up your Case Manager and ask for a new therapist. We were told to give it about 3 months before making that determination though. Right around the time I was ready to call about one of Iron Man’s therapists, she quit. She did the dirty work for me.

If your child is in school it’s not so easy. We are starting a new school year for Spiderman, Batman, and Iron Man will be starting next week. I have a feeling that the Physical Therapist that works with Batman and Iron Man won’t be so willing to work with them after the week we just put in with her. We had to start the formal process for due process; we ended up not having to go and Iron Man now has his PT. But I’m afraid my stick-it-to them attitude may have altered her willingness to work happily with the men.

One other important bit that makes parting so much easier is to ask for letters from doctors and a copy of records automatically. I have a file folder on Spiderman, Batman, and Iron Man and when we need to go to the doctors the file goes with us. It makes it easier to go to appointments if you have information with you and if you need a second opinion, you have the records with you.