Being Joyful

Twelve years ago, when my youngest daughter was an infant, she literally had eleven appointments a week, EVERY week, for two years.  Physical, Occupational, Speech, and Cognitive therapies, as well as vision services.  Because my baby was born a little different, as we all are in our own ways

Out of those eleven appointments a week, only two of them were conducted in our home.   All the other appointments, were down at the childrens' hospital, on the therapy ward they had at that time... with all the other special needs kids and parents.  Naturally, we made friends, got to know the other families.  My two girls spent so much time there, it never dawned on them that anyone was 'different'.  Even my eldest who was eight years old at the time we first started going, didn't bat an eyelash at a little friend who was born with her arms on 'backwards', with knees and elbows and ankles that didn't bend.  Many kids unable to walk, talk, unable to move at all.  But kids are kids... they readily accepted each other.  While my youngest was in therapy, my eldest would lay on the mats with kids who had NO movement.. none at ALL.. and she'd sing and chatter and read with them, and I would see their smiling faces and hear their laughter..  kids are kids.. it really was a beautiful thing. 

Dealing with doctors and therapists.... that was a hard time for me then.  My eldest who had just turned 8 years old had just gotten diagnosed with ADHD and ODD... and now I had just had this little year old baby girl too... and she was born legally blind, the myelin in her brain not fully developed, and autistic...  and for me, it was a lot.  I felt overwhelmed.  It was a lot to take in.   I wondered if I was being punished by God.  I wondered if I'd done something when I was pregnant to cause it.  Because, surely, this was my fault?  It had to be.  I cried a lot.  I felt pulled in a hundred directions.  Depression and anxiety were a daily thing for me.. but I kept going, because I had to.. I had no choice.  My girls needed their Momma.  Dinner still had to be cooked, the laundry washed, the dog walked and fed, and homework completed.  I struggled to find joy... it seemed to be hidden away from me.  And it felt permanent.

Looking around on the therapy floor... sometimes it was hard to not cry.   Severe deformities, diseases, illnesses, syndromes that I was not used to seeing...   I would try to smile...act normal... and then later I'd sob my heart out all the way home after our appointments after my kids passed out in the backseat.  How on earth did their families manage?   After all of the "why me, Lord?"... I had an epiphany.  "Why NOT me?"  Seeing the other kids who were severely impaired, or may not even live to see adulthood, made me realize how totally blessed I really was/am. God had given me two very precious gifts... my daughters.  And they are perfectly imperfect.  Exactly the way they are.   Two of the best reasons in the world to be joyful. 

My girls are now ages nineteen and twelve.  Last night I took my youngest to swim training for Special Olympics.  She still has very poor muscle tone, and is a slow, awkward swimmer.  Her legs spread apart instead of keeping them together, and she flails around as she tries to swim.  But she DOES swim!!  With a big smile on her face, she eagerly jumps into the water.   She may not be the fastest, but like her big sister, my girl is part mermaid... she loves jumping in the deep end, having fun, and then laying back to float... smiling up towards Heaven as she relaxes, enjoying the feeling of floating. And she is completely joyful in that moment.  

The Special Olympics is a God-send for us.  I absolutely LOVE that my daughter has friends who accept her, and she can play sports now... sports that she couldn't play before on a 'typical' team.  She isn't the 'odd kid out' anymore.  She is a "pea in a pod" with her team mates.  All that matters here is doing your best, and being brave enough to try.  They are friends.  They are actually pretty competitive, and they really, truly accept each other.  The Special Olympic athletes inspire me...   The volunteers I am so grateful for. God is GOOD!!!

Fighting For Your Child with Special Needs

Yet another step today in the continuing saga of getting a "diagnosis" for my child.  Yes she is legally blind.  And yes she is "on the autism spectrum".  Yep.  It's ice cream.  But what flavor?  Who knows. :(  And Heaven forbid they just test the child or send them to a doctor who specializes in that.  Nope.  You have to play their game.  Can I even remotely say how much their stupid game just STINKS? 

I heard from the Center today for folks with autism and related disorders.. they want me to contact every single solitary doctor/therapist/service provider she has EVER seen and get a copy of any and all records they have... and then give a copy of those to the Center before they can recommend a blessed thing.  Way to jump through some hoops! Bureaucracy at its finest.

Since one of the things required (they have insisted on) is any and all "IEPs"  from each year in public school. For anyone unfamiliar with what an IEP is, allow me to explain.  An IEP is an Individualized Education Program which is from the persons with disabilities act, and each special needs child gets one.  They update them each year, (or more often if needed), and set new goals for the semester/year. The idea behind the IEP is to tailor-meet the child's specific needs, and to help out the teachers and service providers.  Sounds good, right?  It probably would, if they did it right.  Instead it's more like cows getting graded at the fair.  Except I think the cows get more attention and looked at better. :(  And then when the schools lose funding, and classes/services are taken... the kids suffer.

Okay. (back to where I was) I called the last public school she attended four years ago, and after talking to the nice lady in Guidance, (and I think I should get points because I managed to not cry on the phone), they have all her IEP stuff and have it sitting up front for me to pick up!  Yay, that was easy!  Though, I maintain that she has not had an IEP since she was in public school and I took her out 4 and a half years ago so she has not had an IEP in all this time.   

Why they need these old things (the IEP) is beyond me.  She is not the same child she was then.  Not to mention that the folks "in the system" are not exactly the finest in their field, (shall we say?).   Some of them don't know their elbow from their backside, and I was not confident in them then, and I am not more confident in them now.  If they were that great, why don't they have their own practice set up somewhere?  I am thinking these are the ones that barely scraped through.  

I also called and got emailed to me the release forms from the Children's Hospital here.  So I am on track.  I think.  I just hope that this gets us a little closer to getting a good diagnosis, and go from there.  One more stepping stone in this journey.  My hubby pointed out to me today that I asked for this journey.  Yes.  I did.  I could have left well enough alone.   Let my daughter continue to live and grow and play and learn as she is now.  But she is getting older, and God only knows what the future will hold, or how she will be.  I am not risking my baby.  I need to know that what we are doing now will help lay the groundwork for services for her if and when she needs them.  Because without a "real" diagnosis, there's nothing.  Being complacent... there's just no room for that right now.   This is not about me.  I need to do what's right for her.  If a mom does not stand up for her child, then who will?

I will say this.  If any mom out there has a question or concern in her heart about her child... even if it's a concern you've never even voiced out loud.  Follow your gut.  Don't wait, and then later regret it. 
 Your baby is worth it all.  We have to be strong and be a voice for our children.  Don't sit on your hands, and don't let anyone tell you that you're over reacting or that your "just being a mom" or any such foolishness.  You know your child better than anyone else.  Stand up.  Demand to be heard.  Fight for your child.  You won't regret it.