Redefining Perfect

Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis!

The short of it – we may never know what causes our little one to struggle.  It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally. 

However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs.

To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone.  She again listened and heard all I had to say on everything we’ve been through the past couple of years with her.  She gave advice and took a good look over her, just as she had with Riley.

Her solutions here were a little more complex, but not by much.

1. We are doing an MRI on her brain.  Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this.

2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course. 

Why are we doing these?  Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s.  She said that while it is likely just her early birth date, we should exhaust the remaining bit of question.

And onto the HOW’s…

1. Restarting Speech Therapy
2. Restarting Occupational Therapy
3. Having a psychological exam done to determine need for Behavioral Therapy
4. Returning to the Feeding specialist for  monthly visits
5. Restarting Physical Therapy

All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues.  Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say.

And that is where we stand now.  Therapy, therapy…and more therapy.  I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it.

Last year I was afraid to try again.

Five months ago I took the leap.

Four months ago I was afraid to hope, but felt it creeping in.

Today was the big day.  Technically it was the FIRST of TWO big days.  We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.

I got up and the crack-of-dawn o’clock and hopped in the shower.  I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car.  Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city.  We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.

And we waited.  and waited. and waited.  30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.

It was worth the wait.  It was worth the 4 months it took to get into her office to even see her.  It was worth the hour wait.  Why?

For an hour and a half – a FULL 90 minutes – she sat in that room.  She never left. She sat there.  She listened.  She talked.  She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.

She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.

We have confirmations, we have suggestions…we are feeling hope.

I go back on Monday with Angel.  At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today.  Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope.  The adults. 

Do we now have all the answers?  Heavens, no.  But this doctor is helping us define a path.  For each girl, individually.  She is listening to us. 

And that…that is the most wonderful thing in the world.

With SID you have two camps – the sensory AVOIDERS…and the sensory SEEKERS.

I have two SID girls – one Avoider (Riley) and one Seeker (Angel).

Up until a year ago I was certain that having the Avoider was the “Worst” of the two.  Social situations, eating, playtime were all such challenges.  Planes flying overhead were a nightmare for weeks, trucks driving by. 

Coping mechanisms were learned and slowly with time it became less of an issue.

Then we had our Seeker.  I thought it was tough to handle when part of her seeking techniques were ramming her head into everything.  Screaming at the top of her lungs. Throwing everything. Breaking everything.

But as much as we’ve been able to curb (some) of these events – in the past year we’ve had the occasion to experience the worst of the SID habits.

Smearing poop.

Poop on the walls, the beds, the clothes…IN HER MOUTH.  It makes me wonder for her intelligence (sometimes when I’m most stressed) - and my sanity.  It is one thing that I can seriously get truly and horrifically upset and disgusted for….

And it’s one thing that I haven’t the foggiest idea how to stop. The taste obviously doesn’t put her off.  The smell.  The feel.  None of it. 

I’ve found out through research and searching that this isn’t uncommon – but is ALWAYS stressful for the parents.  I also see posts of some children doing it even after potty training, and beyond. 

So for now I sit and research coping mechanisms again…although this time, I search for coping mechanisms for myself and my husband. I don’t think either of us look good bald.

For the first TT, we’re going to cover SID – Sensory Integration Dysfunction (also commonly called Sensory Processing Disorder).

Definition of SID:
A neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception).

The layman’s definition: Difficulty processing sensory input.

SID can be a standalone disorder, or it can be symptomatic of other disorders (such as forms of PDD, Tourettes, or even dyslexia).

SID is usually diagnosed by an Occupational Therapist.