Seven Years Home

This blog is a bit dusty and definitely very lonely. For a long time, it was a place for me to share my heart and soul but for multitudes of reasons I laid it by the wayside. 

 Seven years ago, Little Girl came crashing into our lives. 

To say that she has been a big part of why my voice went quiet would be putting it mildly. 

 When she first came home, she was a seizure nightmare. Every five to ten minutes she crashed to the floor with major drop seizures and between all those she had hundreds of small eye-blinking seizures. 

On a very rare good day she had less than 30 drops. On a horrific day 150 or more. The eye-blinking we didn't even bother counting. 

 But we did not despair because in our naivety we thought that the doctors could easily fix her up. 

 So we tried different drugs only to find out that inside Little Girl is a monster that comes unleashed when certain types of drugs are in her system. I do not want to remember the despair of those days when those drugs made her try to scratch my eyes out. 

 When drugs failed we switched to the Keto Diet. We jumped for joy when her drops disappeared - only to cry in despair as they came back bit by bit. We adjusted the diet, added medical marijuana, had an implant placed to sent electrical impulses into her brain every few minutes. We added another seizure med. And again, we jumped for joy as the drops decreased. 

It took years but bit by bit she no longer fell to ground. 

 But all the while those disappeared she threw at us new seizures - the kind that stem from those quiet eye-blinkings that we ignored because drops were so much worse. We thought. Those eye-blinkings grew and grew and became the new monster. They cluster and send her into non-stop seizing. Non-stop means non-stop. She won't stop seizing until we give her rescue meds. 

At first the non-stops were just cluster after cluster but then that too morphed and became a new monster. They morphed into tonic-clonic seizures - full body writhing. Lately those have morphed. Their intensity ever increasing. Scaring us. 

We are trying new drugs but no change. Daily we are forced to rescue her one, two, three or more times. 

 But the seizures are only part of Mary's story. The other part is the part that I rarely ever talk about. 

The autistic part of Mary. Yes, I said it. Little Girl has autism. We've known it for years but the official diagnosis came this summer. 

 Mary's type of autism stinks. There I said that too.

 Mary also has developmental delay. Break my heart I said that too. 

 Mary has two extremely rare genetic anomalies. Both of those come with a wide range of symptoms. Seizures, autism, developmental delay, ADHD stand at the top. There are loads more symptoms but those are the ones that derail us. They derail her. 

 Mary's behavior has been a big part of what has silenced my voice. She wears me out. Between her seizures and her behavior I feel like we are on a treadmill of exhaustion every single day.

 Early mornings are given to getting her seizures under control as she switches from sleep to awake. 

When she is finally awake, fed, dressed - we then get to see what Mary we will deal with on that particular day. Bad seizure days subdue her - she's content to build puzzles (which is one of her strengths) or color or look at books. She's quiet and sweet and easy and if not for the seizures, we'd wish for those Mary days all the time. 

 On days when the seizure are mild to moderate she's full of herself - tossing back and forth between hyper and oppositional. Much of her behavior comes out of her mouth. She speaks her mind. Verbally tells us off. There are no reasoning skills one can use to move her mountain. She has no filter and no impulse control and her agenda is her agenda and that's all I need to say. She can be extremely funny on these days and terribly frustrating to the point of tears. 

 On the rare no seizure days - Instead of rejoicing we cringe. The lights are on in her brain and the stimulation of the world sends her into a frenzy. She's out of control. Emotionally, behaviorally. We are left crushed in her wake. Sadly - those days are usually followed by a major crash seizure wise and we cycle back around again. 

 Those who know Mary in public often don't see all of the many sides of Mary. Unless she is actively in non-stop seizing or unless you watch her closely - you miss seeing the eye-blinking seizures that rule her world.

 When she's in a group she tends to be quiet. Unless we are in a store where she goes into sensory overload, she's mild-mannered. Since so much of her behavior is verbal and being out in public is a happy place for her - it's easy to assume that she is a sweet, compliant, beautiful little girl. 

 And we are left even more exhausted. Few understand what it takes to deal with Mary. 

To the world she is adorable. To us she is our hysterical wild child who has us pulling out our hair and grinding our teeth in despair. 

We love her. We sometimes wish for peace. 

 We do have aides who help us. We are not alone in our world of Mary. We are forever grateful for them and all they do. 

 But we are tied to Little Girl. We are always within a 10 mile radius of her. We are always on guard. 24/7. 

She is never alone. Never without eyes on her. Even while sleeping. 

 Seven years home. Seven years exhausted. 

 We would choose to do it again if given the choice. 

And that's just plain crazy!

On The Road - Oh My!

I remember learning to drive.

I was the third in our family and so the novelty of a new driver had worn off by the time it was my turn to sit behind the wheel.

My driver training consisted of a few excursions around the block in my dad's stick shift. I mastered the skill in our neighborhood after a few times practicing and was deemed ready to take the behind the wheel class.

The instructor was an older, impatient lady with little compassion for new drivers!

I got in that car for the first time and reached for the stick shift with my right hand and my left foot searching for the clutch.

Neither was part of the car.

I was completely lost.

 I didn't even know how to put it in gear!

I will pull the curtain over the verbal abuse I got from my instructor.

With harsh words and angry glares, she had to impatiently walk me through driving an automatic step by step.

After a few lessons with her where I soon learned to drive her car, she reluctantly passed me but wrote a note for my parents to PLEASE give me a bit more training before taking me to get my license.

Neither parent read the note which sat unopened on my dad's dresser.

The day I turned 16, I got my license.

I was driving alone within a few days.

It was a different world back then.

When our first two did the license route 10+ years ago, we were strict and careful and made sure they were well prepared. We made them practice, practice, practice and refused to let them drive alone even when they had the piece of plastic that gave them license to drive.

It was a long time before we felt at peace with them out navigating the roads on their own.

It was even longer when we let anyone ride in the car with them.

When John and Aaron reached the time when they could start the process, we looked at each other and wondered how in the world we would ever get them behind the wheel.

We had no idea what was involved for two boys who are handicapped to get their license.

So we just defaulted to doing nothing.

That lasted for a few years or so until they both started asking, wondering, longing.

So we started the process without the foggiest what was involved.

They took the classes, they needed, they studied for their learner's permit and we went in to take it.

They both failed.

Ouch.

It was okay. A large portion fail so it was fine.

But while there they made us check a box indicating that they would need adaptive material on their cars in order to drive. They sent us home with a ream of paperwork and a medical that the doctor needed to fill out.

Little did we know that that checked box was going to set us back a long long time and the hoops they would have to go through to drive would make breaking into Fort Knox look like a piece of cake.

We filled out the forms, got the medical and six weeks later went back to try again for their learner's permit.

I stood at the DMV desk with both boys helping them navigate the process.

John got the green light to go ahead, and he went to take the test.

Aaron hit a wall.

His file had a rejection on it. He could not proceed unless we had a certified driving instructor overseeing his driving.

What?? 

Why Aaron and not John?

I was a bit shocked, frustrated and definitely angry.

They refused to let him take the test with that rejection on it and no amount of reasonable pleading would change their minds.

John passed his test, but Aaron wasn't allowed to take it.

Over the next weeks I made phone calls, banged my head into the walls and researched until I realized that Aaron's medical had made it to the DMV which immediately put a red light on his file and John's paperwork had gotten lost.

So one boy was able to get through because of lost paperwork and the other was shuttled to the side.

We had to pay 250.00 to a company that did driver training to get Aaron out of the red light jail so he could get his learner's permit. That took months and months.

Getting a learner's permit was honestly the easy part.

With the checked box on their application, we couldn't just proceed to the next normal step.

They had to be in a program to get their licenses.

We couldn't afford to go the driving training route that we used to get Aaron his learner's. Two boys and the costs for that program were outrageous.

Thankfully, we found Plan B.

A year and a half ago the boys enrolled in a program in Virginia that gives driver training, vocational training, job help and a little bit of a lot of other things. Wilson Workforce and Rehabilitation Center.

The people there have been fantastic.

Both boys were evaluated for adaptive devices.

John's were fairly straightforward and easy (although it still took 6 months).

They picked what he needed, he spent 6 weeks last fall training on the equipment and passed his driving test.

He now had a license.

Aaron hit another wall.

The adaptive equipment they had at the training center was awkward but the best they had to offer.

He spent 5 weeks at different times in the year learning that equipment until they cried uncle and wanted him to try something else with an entirely different training program.

The new equipment worked like a charm, so he spent 5 solid days learning that equipment and then passed his test.

Both boys have their licenses.

And then we waited. And waited.

Part of the waiting involved the financial part of getting them behind the wheel.

Virginia has a program that helps cover the cost of their adaptive equipment after we pay a deductible.

This involves bids and then approval and then putting the equipment in.

This past week - John's car was adapted and he has been driving under the watchful eyes of the instructors at Wilson Workforce.

On Friday he will be released and able to drive independently.

Of course  - he will have to pass the Dad and Mom driving school which involves many hours of practice before he is fully released to venture out on his own.

But despite that minor setback - he's so excited and we are so proud!

That just leaves one more to get through the process.

For Aaron - it's anybody's guess how long it will be. His adaptations are more intense and require financial approval way up the food chain. 

So he's "patiently" waiting and hoping that soon he too will be sitting behind the wheel of his own car.

I've got mixed feelings about my boys out on the roads.

I had those same mixed feelings with my first two.

It's hard to let go.

But I will be glad when the cars are finally finished, and we can put this crazy, hard process behind us!

As for Little Girl - driving is not ever in her future but she will definitely enjoy being chauffeured around by her big brothers!