As They Grow… — 5 Minutes for Special Needs


                               

I am the first to admit that March 7, 2007, was one of the toughest days of my life. I sat, holding the baby that only a week prior was declared “mine” in a court of law, while a neurologist told me my son had a diagnosis that changed his life forever.

I felt numb. I felt like I couldn’t breathe. I felt alone.

I bought chocolate. I bought wine.

I had to tell my mom…my best friend…my daughter.

All those years ago, I was sure that getting over the grief and desperation, and finding the point where I felt that I was educated enough to be an advocate was a huge achievement.

It’s not.

My Grandmother used to say, “Little children, little troubles…Big children, big troubles!” She was so right on so many levels.

Only in the special needs world, it just gets…weird.

Jack is 5. Developmentally, he’s somewhere between 2 and 3, but occasionally is “on target” for random things. You know, like his extensive knowledge of all things Star Wars. He should start kindergarten in the fall. However, if he goes to public school, he will be placed in the “special” classroom, and only be able to be mainstreamed during PE and recess (both of which he cannot participate in). Every “normal” private school I contacted refused to even consider him because he has too many needs. He’s a liability. The “special” school we are looking in to…he might even be too disabled for them!

I feel very much (again) like I did all those years ago. I feel alone. I feel scared. I am anxious. I want what is best for him without compromising. He deserves the best.

Other parents I have spoken with…they don’t get it. And you know what? I’m not even sure I get it!

(at this point, I could also begin a terrific rant regarding health care coverage for these children, but that would probably incite riot, and I’m not up for that these days)

When the grass seemed greener on the other side–I appreciated the dirt and lone flower growing in our own garden. When the road was long and weary, I found hope and light in darkness and shadows. Now, as I watch my Sweet Baby Love turn older, I am once again looking for the good in the seemingly horrid. I find myself staring at him, praying for him to not know the cruelty of the world–knowing that’s too naive of me.

I won’t back down. I won’t give up. I will always have hope…he’s my son.

Pass the chocolate and wine.

Email Author    |    Website About Heather P

Heather is a mom of two, wife, and nurse educator doing what she can to save the day! She lives in Orlando where she is routinely spotted driving while singing ABBA--all on a mission to advocate and educate!

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1 Jo April 6, 2012 at 2:04 pm

I have no words for you just to say I am thinking of you. It just isn’t fair….
Buckets of wine and chocolate to you.
Peace

2 Laurie Wallin April 6, 2012 at 6:14 pm

Yes and amen, sistah! I’ll join that party. We’re on our way in a few minutes to visit my sweet Red at the center and wow, it really DOES get weirder the older they get. But like you said, we also love fiercer, live braver, hope longer as those parenting muscles grow. Grateful for your sweet reminder of the joy in our journey…

3 Mary E Smith April 7, 2012 at 1:36 pm

My thoughts and prayers go out to you as you find your path through this time in your life.I am also searching for a place for my son who has been in a public school since he was 3 yr old.He is 12 now and the placement for this year is not working at all.I have watched him regress severely since August of 2011.We are seeing behaviors that we haven’t seen in years.I take him to school and within 30 minutes,he completely melts down.Homeschool may end up being my only option with him also.I don’t know if you have considered it.I have homeschooled my oldest from age 11 and found some families that are very accepting of children like my special boys.It’s hard but the good day’s really do make up for the bad ones.

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