Busy making other plans

There have been several times in my life where I've found myself re-defined.  Not because I was wanting to make a change, but because I discovered that I am, in very essence, different than I thought I was, or in different circumstances than I had hoped for.  Some have been small things, relatively easy to come to terms with.  Others were much larger in scope.

I always thought I would love the maternal thing.  You know--being pregnant, nursing, caring for tiny babies.  My mother did.  I loved other people's infants.  Baby dolls were my favorite toys for more years than I really care to admit.  My mom used to tell me about a friend of ours who really didn't care too much for kids until they were a bit older.  Even her own.  This story came with a judgemental undertone.  What kind of mother, after all, didn't just adore her own babies?  Something must have been wrong.

I got married young and became pregnant quickly.  And I was sick.  Very sick.  Lose weight kind of sick.  That finally subsided.  Then I was uncomfortable.  Water retaining, back aching, rib crushing uncomfortable.  I could not wait to be done being pregnant.  #1 was born 6 days early, which was good for my morale.  Except that then I had the baby.  A baby who had difficulty nursing.  When she did nurse, she'd immediately projectile vomit most of what she'd consumed.  She had a blocked tear duct.  I had an over-active let-down reflex.  We were wet and miserable a good deal of the time, or so it seemed.  Breast-feeding was not comfortable for me, physically or emotionally.  But I knew it was best, so I did it.  And I felt guilty, because I did not enjoy it at all.  

My pregnancies only got harder and much more painful with each baby.  I never became comfortable with nursing.  I continued to resent the infant schedule.  I did, however, finally stop beating myself up for not being what I thought I should.  I finally came to terms with the fact that I prefer older children.  I loved each of my babies, but I enjoyed them more and more as they grow up and become more independent.  I decided that nothing was wrong with me.  Just different.  As soon as I made that decision, the added stress of living up to unrealistic expectations lessened tremendously.

It was only a few years after that epiphany of mine that #1 was diagnosed with mild mental retardation.  I can't say that it was a complete shock.  We'd been testing her for different things for several years at that point.  We knew that she was not developing  at an expected rate.  It was the beginning of her 1st grade year.  I was happy on one level, because she finally started to receive the help that she so clearly needed.  She also got more understanding from faculty and staff at the school.  But I was also full of negative emotion.  I was embarrassed.  Silly, I know.  I felt guilty for feeling that way.  I never looked down on people with disabilities or their families.  But some vain, arrogant part of me did not want that to be MY child.  I was very smart.  Did well in school.  So did my brother.  My dad has a PhD. and is well known in his small, specialized field.  I married an intelligent, articulate, analytical man, in graduate school himself at the time.  I fully anticipated having brilliant children.  #1's disability was a blow.  

I didn't share her diagnosis with many people right off.  For some reason, it felt to me like admitting to failure.  I was afraid that she'd be treated differently by family.  I actually kept telling myself that she'd catch up at some point in the near future.  That she was just behind and would turn out just fine and normal.  I was waiting for that.  I was impatient for it.  I was not happy.

The best thing I ever did was sign her up for VIP soccer.  VIP is the AYSO's special ed program.  That first year was intimidating for #1.  Our region only had one team, and so she was a 3rd grader playing with High School aged kids.  But it did wonders for me.  I watched the other moms.  They acted like any other group of parents.  They complained about bad attitudes.  They laughed at funny things their kids said or did.  They cheered when their kids made goals.  They hassled them for not paying attention.  Life was normal, and these moms were happy.  And though it seems obvious in retrospect, that was the content of my next big epiphany.  It didn't matter if #1 was retarded or not.  She was the same girl I have loved her whole life.  It would really be fine if she never caught up to her peers.  Maybe her peers were a different set than I was thinking.  Not a worse set, just a different one.  I started to drop my unrealistic expectations of my daughter and started to be happy with my family as it was.

We moved to the mountains the next year.  #1 had a much better experience at school.  We were also in a different AYSO region;  one that was incredibly supportive of their VIP program.  I became very good friends with the coach, and got involved with the kids.  Some of the kindest, sweetest, most genuine people I have ever interacted with I would never have met had I only been the mother of "brilliant" children.  

One of the first things I do now in way of introducing my daughter is tell people that she is mentally retarded (because you don't notice right off).  It's who she is.  And it helps people to interact with her more appropriately.  When we built our home we added an apartment in the walk-out basement to be used by #1 when the time comes for her to have some more independence.  I love seeing that space.  Larry and I want to serve a mission together.  We really hope that #1 will be allowed to come with us, and serve as well.  I'm proud of her when she reaches out of her comfort zone, when she makes friends.  I love what a nurturing, caring person she is.  I delight in her simple faith.  She makes all of us in her family better people for knowing and loving her.

I'm not living the life I had planned, or in the way I figured.  But it is my life.  It's a good one, too, and I am grateful for it.

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.