Another Old Post…This time about Max.

I posted an old post about Ollie a few weeks ago, so I feel like I should do the same for Max.  Here are two posts about going through the IEP process with him.

My Dearest Maxer:

Tomorrow is my first meeting with the IEP team about you.  We’re not sure what’s going on, if anything is going on at all.  You’ve been having some trouble at school playing with friends and following directions and we just want to see if there is anything we can do to help you out!  That’s not to say you don’t have good days.  As a matter of fact, you have had two perfect days at school that last two days!

We’ve been so proud of you throughout your short, but lively, three and half years.  When you were born, it was a miracle.  Literally, a miracle.  It was the happiest day of my life and I can’t see any way that day will be topped.  I wanted to take this time now, before any meeting, before any checklist or specialist can decide who you are, to tell you all the things you are to me, and how, no matter what is said, these things will never change.

  • Our eyes are exactly the same color.  I haven’t noticed this until recently, but I love that we have this in common. You actually told me about this. Its a subdued hazel color that reminds me of a calm lake and I love that it links us together in a way that is only for us.
  • You have the most amazing vocabulary, better than most kids I know.  You use so many words I didn’t even know you knew and in the correct way
  • You are a wonderful big brother.  You go out of your way to make sure your brother is included in most things you do and are always sharing with him and asking him to play with you.
  • Your memory is remarkable.  You remember things I may have said once weeks, even months, ago (and are oh so kind to always remind me)
  • You give the best hugs.
  • You love your family; your grandparents, your uncles, and me and daddy.  You have no trouble telling us this and do so frequently.  This is a gift.  Don’t ever lose it.
  • One of my favorite times of day is the first five minutes that you wake up.  You run in, jump into bed with me and pretend to go back to sleep as you snuggle up.  Guess what.  I pretend to stay asleep, just to have a couple quiet minutes with you.
  • You love to help out and always want to be involved in everything.
  • Your stubborn streak drives me crazy, but I secretly love it.  It’s a part of me in you.
  • You are very interested in building and making things.  Anything you can do with your hands, really.  That makes me so proud considering I can’t even put together IKEA furniture.
  • You have a very active imagination.  You make up amazing stories and songs and constantly keep me laughing.

I could continue to write this list forever but I’ll stop here for now. Really, there is only one thing you need to know. No matter what happens, I love you.  As long as you know that we have nothing else to worry about.

Love,

Mom

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I realize it’s been a while since I’ve posted. Part of me just wasn’t ready to post until I had a final answer about Max. The other part of me has been crazy busy with so many things going on that I can’t even keep my head straight most of the time.

About a month ago we had Max’s testing date. I got the results in the mail a few days ago and today I met with that evaluation team to talk about the results. He received hearing and vision tests, was observed at school by a child psychologist to evaluate social behavior, and was given language, speech and cognitive tests as well.

One of the biggest things we found out was that Max has profound hearing loss in his right ear and borderline hearing loss in his left ear. This hearing loss has most likely been there for a while, probably more than a few months and it just shocks me that we never even noticed anything about it. Both the audiologist and the pediatrician believe it’s due to fluid buildup behind the eardrum when he had an ear infection almost a year ago! We went back today and saw that the hearing loss is getting worse.  We’re hoping that with this next round of medication he will be able to regain all of his hearing. If not we’ll have to visit the ENT to find out if surgery is needed.

As for the other tests, long story short…we have a well adjusted, highly articulate and well mannered, very bright, slightly fine motor delayed three year old who is well socialized for his age in all areas.  I don’t know if you know what it’s like to have a 50 pound bolder lifted off your chest, but that’s what this news felt like.  As first I was so relieved that I cried.  Then I became so angry I cried.  For two years we have been going through this nightmare where his teachers have been saying that something is wrong, or he might be on the spectrum and in reality, nothing is wrong. I wasted two years of my life trying to change my child and expecting him to adapt to what certain people think is “normal” instead of finding the right environment for him…the one that will let him be his quirky, lovable self.

Throughout this whole process I’ve learned a lot about Max, things I never knew.  Amazing, wonderful, delightful things.  But more importantly I’ve learned a lot about myself and my role as a mother and an advocate for my children. I’ve learned better to stand up for myself, my thoughts, and my opinions, and to stand up for theirs because they can’t do it themselves yet…that is, until I teach them to.

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