Sigh....

* Do you think Maddie likes her new eye patch?

Ok, so this week we went to see Maddie's pediatric eye doctor. We found out that she has V pattern exotropia. This is not the answer just yet for her eyes so don't get too excited. I was initially excited at the fact that perhaps this was the cause to her eye rolling, blinking, photophobia, head aches, and even possibly the balance wobbly issues (ya I have high hopes.) I had asked Dr. Hastings if it was possible that it could be the cause to her problems. She didn't sound too promising but agreed that it MAY be a possibility. She said that MOST kids do not get head aches or have many issues at all with this type of strabismus (exotropia is a type of strabismus.) I explained to her that Maddie IS NOT like MOST kids and has a lot of sensory issues. I was trying to convince her that perhaps Maddie is extremely sensitive to EVERYTHING and maybe...just maybe she is really sensitive to this eye problem and it causes her these issues. She did say that Maddie is getting double vision when she looks up. ...So, how would you look if you had double vision and were VERY sensitive? It is a stretch but I am really hoping that it is sensory.

Dr. Hastings gave us some eye patches to try out. She will call in 2 weeks to see if there are any changes. So far it seems to help for about 30 seconds...then her eye goes out and she tilts her head to look with her eye outward. We will see how it goes.

Maddie is still having a good week. In the last few days she has said some words and that is very encouraging. I am not getting too excited however, as her pattern has been the same for as long as I can remember...good weeks, bad weeks, good weeks, bad...etc. So it is great and I am so happy she is saying a few words again, but I have learned to not get TOO excited just yet. She is saying Uh, Oh again and all du (all done) again. She stopped that for a while. She is also saying qua qua again! Super cute! I got a note from her therapist that she said Ball today! I have been working on this word with her forever.

I do think she knows I get frustrated and gives me a harder time (being stubborn) when I am working on her words. I think this is why I hear little words from her, and am surprised when I hear that she said certain words at school. I guess all kids give their parents a harder time.



Through this whole process with Maddie I have become very close with other parents who's children with some special needs as well. Today I received an email from a friend who is now at a point of acceptance that her child may need some extra support for some of his needs. She wanted to thank me (of all things) for for understanding her denial. She had finally agreed that it was time to ask for some help for her son at school.

I am going to post the response I had (w/out her name or his ;) because I am proud of the transformation I have made through this process. I too was in denial for a long time. I did not understand WHY Maddie was not learning. Why she hated to be touched or looked at, or cuddled. Every time she hit 1 month older I was so depressed at lack of progress. I didn't understand why nothing in the books worked...all the advice the doctors and other's gave...Nothing worked. She didn't sleep, she wouldn't eat, she hated life. I never stopped to think that it was actually ME who wasn't accepting that we couldn't go by the books...If Maddie needs to swing in her baby swing at 16 months old to calm down- so be it. If she can't hold a sippy cup because she fists her left hand we'll give her a straw. If she is obsessed with licking, we will give her ice pops and let her lick.

I have realized that MY control, MY way of teaching her is NEVER going to work...and in fact it was becoming a barrier for her. I needed to accept that. I have now and am proud of this. I now take Maddie's lead, and allow her to show me what SHE is ready for. I felt it was important to share this email response as I am sure ANY parent who has had a child with some special needs can relate to this important process.