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Thursday, October 16, 2008

IEP

She entered the world with a perfectly round face, big blue eyes and rosy red lips.  Absolutely beautiful.  We'd get stopped by strangers for months to tell us our baby looked like a porcelain doll.


For the first 7 days, we had a rough time feeding.  She'd latch on, and then stare at me.  No sucking.  Any milk she did get down she'd quickly projectile vomit all over me.  I was frustrated.  I was scared that they'd make me start her on a bottle if I told the doctors.  So I would call my mother in the middle of the night, sobbing and seeking advice.  But she figured it out--eating--and did just fine.

She didn't crawl like other kids at first, instead rolling with great expertise to her destination.  But she figured out the crawling too, eventually.  At 16 months, she figured out the walking.

Even with these delays, it was not until she had hardly figured out talking at 3 that we started to seek professional advice.  And this was the beginning of a four to five year period of testing, wondering, misdiagnoses, discovery and therapy.  It was a period of fighting against what I both knew to be wrong and hoped to be wrong.  I'm not sure I handled it well, but I am also not sure how I'd have done it differently.  That medical journey is the topic of another post.

At three years old my #1 had her first IEP developed for her.  I have found that this is something that either a person's child has or that they have never heard of before.  It is an Individualized Educational Plan.  Yesterday, #1 turned 14 years old.  This morning, we developed her 12th plan.

Her first four IEPs were exclusively for speech therapy.  It was a relatively easy process.  But by first grade, she was not keeping up.  Even remotely.  Teachers were frustrated with her, and I think with me.  At my request, she was tested for the possibility of more intervention.  That process was conducted by the school psychologist and took several weeks of testing #1, interviewing me and her teachers.  Just after her 7th birthday was the IEP meeting to discuss those findings.

The psychologist pulled me aside just before the meeting to prepare me for the label.  Mild mental retardation.  IQ of 68.  He said he didn't want me to be thrown off in front of everyone.  I was grateful, and went through the meeting in a numb, out-of-body sort of fashion.  This was not what I had expected.  I did not want a retarded child.  Let me rephrase that.  I loved and wanted my daughter.  I did not want her to be retarded.  I got all the way to my car before I broke down.  I cried for a while then had to pull it together to get home to my mother in law who was watching numbers 2 & 3.  I wasn't prepared to discuss this with her.  I wasn't prepared for this at all.

For several years, I would leave the IEP annual reviews and go cry in my car.  I often felt that #1 was misunderstood, and not appreciated for the sweet girl she really was.  I also continued to mourn, and to hope that somehow she would grow out of this and catch up with her peers.

Three good things happened to change this.  First, my aunt, who has disabled children of her own, told me, "A label doesn't change who she is or how you deal with her.  It just lets her get the help she needs from others."  I must admit, however, that I appreciated that wisdom intellectually long before I could embrace it emotionally.

Second, we signed her up for AYSO special ed soccer, or the VIP program.  It's been good for her over the years, but that first year it was good for me to meet other parents of special needs kids.  Good to see them happy and hear them discuss life like any other parent.  I realized that I was unhappy about my girl because I kept hoping for something more.  Larry and I both did.  And that was the year that I began to stop doing that.  It became easier for me to advocate for what would be best for #1 when I no longer had unrealistic expectations.  It was no longer sad.  It just was our life.

Third, we moved to a new community the following summer, just in time for a little maturity to kick in.  #1 was no longer misbehaving at school, and kids and faculty alike did not realize that it was a change.  Peers reacted to her much differently--better.  Teachers thought she was sweet.  And every resource teacher she's since had has quickly come to love her and want to look out for her almost as much as I do.  I stopped crying after IEP meetings.  I'd often come away with a smile on my face, feeling blessed to have such great, caring people to help my daughter get an education.  We'd still sometimes encounter problems, but they were workable.  We'd find solutions.

This morning's IEP was our first here in Idaho.  The only hesitation I had in moving up here was #1's schooling.  New resource teacher, new friends, big, crowded hallways.  I'd heard good things about the special ed programs, but I still did not know how it would compare until we were here.  Well, I am thrilled.  #1 is happy.  Her resource teacher is fabulous.  There is a much smoother transition here from middle school to high school, which will make next year easier.  Her IEP has reasonable goals and sufficient accommodations.  Things that need some tweaking are already being tweaked.  I walked out of our meeting toward my car with a stinging nose and watery eyes.  Not because I was sad but because I am blessed.  Any stresses that this move is causing are worth what we have here for my girl.

I used to think it would have been easier had #1 been born with a visible disability.  Something that we could see and accept and research and deal with.  Our experience has been a little less straight-forward.  But here we are, and I wouldn't change a thing.  We adore our "sunshine" just how she is.  She makes us better people.  We've had associations and made friendships and had opportunities to serve that we'd have never had without a special needs child.  And special needs or not, she is still simply our sweet baby girl.  With a perfectly beautiful face, big blue eyes, and ruby red lips.  

Happy birthday, baby girl.

10 fishy comments:

clan of the cave hair said...

You're making me cry, I never knew any of this. But I'm glad you're sharing it now. Its a beautiful essay about a beautiful girl.

lonelygirl89 said...

This made me want to cry. I have a sister with special needs so I definately get where you are coming from.

Kim said...
This comment has been removed by a blog administrator.
Mina said...

Kim said...

"Mina, I just about teared up reading this post. What a sweet mother you are, and I am so, so happy that things went well today. I'm relieved to hear that this move should prove to be a good one for #1 and for your whole family. It's nearly impossible to describe a mother's love for her child--all of her hopes, dreams, and even fears for that child. You have such a gift when it comes to expressing such deep feelings like this. I'm envious because I am the complete opposite when it comes to that--I am always struggling for the right words and the appropriate way to say what I'm thinking. I admire that talent that you possess...among many, many others. Take care!"

But she included #1s name, which is a no-no. (Sorry, Kim!)

Mina said...

...and thanks for "dropping by."

Octamom said...

Oh, sweet friend. As you may have figured from my blog, our 4 of 8 is hearing impaired and our 7 of 8 is recovering from neonatal stroke--and I can so appreciate your thoughts on your #1. We are so thankful and blessed for the amazing people who have facilitated our journey. We are also now in a place of really enjoying these girls for who they are, for what they are teaching us, for the way they keep our hearts soft. Thanks so much for such a beautiful post...

Blessings~

Kim said...

Mina, sorry about breaking the rules in my comment. I don't actually know what the rules are because I don't know much about the world of blogging. I'll try to catch up! Hope #1 had a great birthday. Thanks for my #2's little gift...she loved it!

Mina said...

Kim, every blogger has different ones. SOme use last names and kids' names and everything. Others use only first names, or initials. Others use code, which is what I do for my kids. I"m willing to use Larry's name and my nick-name, and only a general location. We're just trying to keep things somewhat safe.

Glad to "see" you here. Also glad #2 liked her present. #s 2&3 picked it out. My #1 was happy with hers as well. They thought it was SOOO funny that we were out delivering at the same time! I am so glad we are finally near-by! What fun it is...

Octamom said...

Thanks so much for your comment on my story-it makes me glad I went on and posted it! I was going to, then I wasn't, then I was....

Hope this is making sense--I've got a wicked cold and cold meds make me loopy! ;o)

Blessings!

Kelly said...

Hey Girl! I loved this post. I had just read your friend Octamom's post on her journey with hearing impaired which made me really think of my mom and the struggle she had with my brother.

I guess I am still in shock that I didn't know about #1 until just recently when you commented on your new house and the finished basement. I commend you for making her life as normal as possible and living it for the sweet girl she is.