Distant Cousins Who Live Distantly

I often discuss how certain experiences can bring otherwise strangers together, sometimes closer than family. This is true of my military friends, now scattered around the world. We have a bond, a survival experience, that is unbreakable and incomprehensible to anyone that hasn't lived some thing similar.

My Autism family is much the same. We've been sent on a journey many will never understand, never have to walk. A journey that can sometimes feel lonely and out of our control. Finding those connections with other families on the same path, whether down the street or another country, can instantly make that weight of the journey lighter.

In seeking answers and support, Facebook is the go to gathering place, and thus I found myself in a group of moms from around the world facing my same daily struggles. After a few weeks I began noticing another mom frequently commenting, offering suggestions, that seemed to have children closer to the age of mine. Teens instead of toddlers. Then I realized we shared a maiden name, a name with an uncommon spelling.

And so I reached out to this woman three states away whom I'd never spoken directly to. We did searches, and found our connection beyond just Autism and the coincidence that we both have T-shirt businesses. Sixteen generations back, in a small village in England, our great-grandfathers were brothers.

Two years later we share a sarcastic sense of humor, cheer each other on during moments of chaos. We share triumphs and pains. We share a name, genetics, a history, and a journey. She's my distant cousin who lives distantly but helps daily . A reminder that life's adventure really is all relative.

Have you heard the story about Music?

Any one that spends any length of time with me knows that music is a HUGE part of who I am. I can't drive down the road without the radio playing, can't clean without my mp3 player on, and connect most major memories to songs. I'm constantly turning conversations into silly songs, this week's run has been little tunes about the kids to keep them moving.
Music is my key to surviving all the nonsense that life throws at me. Different points in my life have required different theme songs, sometimes ironic or funny and other times simply accurate to the moment. My latest theme song for several years now has been Rob Thomas's Unwell. All my kids know every line and Geoff can often be heard belting it out as he walks home from middle school.
Music is often also my inspiration and the only way to calm my sensory sensitive kiddos down on especially bad days. Today was one of those days. It began with Spencer crying his way to school for the second day this week and finally convincing a few watching administrators that something has to change. Immediately following that wonderful scene I spent some time on the phone with the assistant principal discussing the stress my middle schooler is feeling, also due to his sensory processing issues. After this particularly painful attempt in getting all my kiddos to school (and not fully succeeding), I rushed to work with a still crying little guy in the back seat.
Rounding the corner to work I got a new theme song. I've heard it hundreds of times, but today it hit me a little harder than before. As I felt the words sinking in, I cranked up the radio and listened as my Spencer hummed along. Thank you Rob Thomas for making it all okay again.

Someday- by Rob Thomas

You can go
You can start all over again
You can try to find a way to make another day go by
You can hide
Hold all your feelings inside
You can try to carry on when all you want to do is cry

And maybe Someday
We'll figure all this out
Try to put an end to all our doubt
Try to find a way to make things better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday

Now wait
And try to find another mistake
If you throw it all away then maybe you can change your mind
You can run, oh
And when everything is over and done
You can shine a little light on everything around you
Man it's good to be so warm

And I don't want to wait
I just want to know
I just want to hear you tell me so
Give it to me straight
Tell it to me slow

Cause maybe someday
We'll figure all this out
We'll put an end to all our doubt
Try to find a way to just feel better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday

Is it really 2009 already?

Last year went so fast and now we're already a month into 2009. I can't seem to keep up anymore. I've been working on an exciting project to create an all inclusive Autism resource center in the Tri-Cities (Autism Connections of Eastern WA) and I'm hoping that will be the big thing this year. It will be so wonderful to have one place where families can go for help. We've got a website up already with a down-loadable resource guide, check it out & share it with friends! .
We're still having a little too much fun at the middles school level this year. We were forced to call the police and file a report on another student after he told my son he was going to bring a gun to school. This student had been harassing my son since last Spring and yet there were no disciplinary actions on file for it. He got a slap on the wrist, but by us sending the cops to his house we finally got things to stop. Now we're struggling with a teacher that feels my son is lazy and a liar, when the real problem is he has a communication disorder and she's not following his IEP. It's sad when it's the teachers making things difficult and not the students.
I'm still working hard at the bridal shop (Formal Couture) and hoping to put on a Prom fashion show in the next month or so. Anyone know any cute teens that want to model some dresses? :)
This year I've decided to pay a bit more attention to this blog and at least aim for a monthly entry.... so someone out there in web-land remind me, please!
Happy 2009!!!

I'll Be Your Angel

Sometimes the words to explain how I feel are hard to express, other times they just pour out. This was a moment where they flowed free.

I'll Be Your Angel
She heard his laughter long before he came
She had seen his face, she even knew his name.
This sweet little one
With the sparkling eyes
Was a child she knew well.
She looked at her son
With tears in her eyes
And said: You're my angel
I will carry you.
I will fight your battles, we will make it through.
I'll be your protector, I'll guard you in the night.
No matter what they tell me, I won't give up this fight.

As her little one grew
From infant to child
He slowly slipped away.
So softly at first
It was hard to notice
How he changed from day to day
Soon the boy
Had lost his smile
And wouldn't look her in the eye.
No matter who
She talked to,
They couldn't tell her why.

But she said:
I will be your angel, I will carry you
I will fight your battles, we will make it through.
I'll be your protector, I'll guard you in the night.
No matter what they tell me, I won't give up this fight.

Friends began
To turn away
When her child lost his voice
No one seemed
To understand
That he didn't have a choice.
Going out in public
Became a huge ordeal.
So did bath and bed time
And eating every meal.

Through the years
And all the tears
She rocked him every night
Singing in her
Quiet voice
His favorite lullaby

I'll be your angel, I will carry you
I will fight your battles, we will make it through.
I'll be your protector, I'll guard you in the night.
No matter what they tell me, I won't give up this fight.

The years pass on
And now the boy
Has grown into a man
Marching
With his momma
Helping others understand.
Until the time had come
When she faced her worse fear
Her life was at it's end.
Her angel sat beside her
Wrapped his arms around his momma
Held on tight to his best friend.

She saw him smile
She heard him say
Momma, can I help you take the pain away?
And though he did
Not make a sound
She could hear his voice, ever so clear and proud.
Saying:
I'll be your angel, I'll carry you
I will fight your battle, we will make it through.
I'll be your protector, I'll guard you in the night.
No matter what they tell me, I won't give up this fight.
I'll be your angel.

Self Discovery

I have recently discovered something about myself that I almost wish I hadn't. I have a problem. An addiction really. I'm addicted to activity. Any kind will do but helping others seems to work the best. You see if I'm not busy than I'm thinking. Thinking of all I should be doing now, could have done better before, want to do, need to do, have already missed, or will never be able to do.

Listing remodeling projects I dreamed of when we bought our home but have put on hold because I can't leave my children alone long enough to finish anything. Mapping out the perfect plan of attack for managing the errands I need to run with out anyone bursting into tears or breaking anything.

Thinking of how I've never had a close friend who really understood me. How those who have even the slightest concept of what I deal with daily are too busy struggling themselves to be bothered by me.

Thinking that even in a crowded room of 50 other women, wives, mothers, I feel alone. So as every other Sunday, I come home from church drained; physically, emotionally, spiritually. My head and my heart are hurting.

Today a phrase from a sacrament speaker has been locked in a recycling lap around my thoughts. "Have I endured enough?" The story was told of an elderly temple worker, crippled by osteoporosis, yet working diligently in the temple. Holding his head upright with one hand to relieve the strain on his neck, drinking his pureed lunch from a Mason jar, he asked another worker "Have I endured enough?"

If this poor man, spending his last pain filled breaths on Earth serving in the Lord's temple didn't feel he had done enough, how can I. And so I return from my Sunday meetings and throw myself back into action. Changing children out of church clothes, fixing dinner, setting out clothes for tomorrow, checking homework, prepping lunches, listening to voice-mail from work, and anything else I can find. Anything to stave off the thoughts of inadequacy, the worry of this week's doctor appointments, putting off the decision to home school or not, and fighting another battle with the school for not sending me all the proper paper work before summer.

Like any addiction, activity drowns out reality. That's why I read the newspaper while I eat. It releases my mind from the sound of A's coughing and twitching, S's continuous twisting and falling off his chair, M's random singing and non-stop chatter. And G's silence as he too sits thinking. That may be the worst part; knowing that I have passed this burden to him. Knowing that if only I'd recognized A's Asperger's & Tourette's sooner he could have gotten therapies that would have masked his now obvious symptoms. Knowing that if G hadn't needed cranial surgery at six months I wouldn't have become so panicked about every little thing. Knowing that if I'd had only one or two children, I would feel better able to cope, to keep up, to provide what they each need.

Yet I also know that they are all mine and were always meant to be mine. That no one else could understand them as well, sense their needs before they arise, or make any kind of sense out of their random collection of behaviors.

And so, here I sit in solitary confinement. Alone in the foyer of church with my 13 year old son, his head cradled in my lap as I rub his back. His coughing and twitching too much for even his own family to ignore sometimes. Separated from the rest because it's less painful than watching as other react to my boys. The well meant cough drops offered to A as he passes the sacrament; the other boys walking away from him as he talks about his latest Nintendo achievement. The comments from G's teacher that "he's not hiding behind the chair anymore;" waiting in the hall until the other kids are in class before escorting him from the silence of the bathroom into his class. Listening to S's three hour muttering of "I want to go home."

Have I endured enough?

The Results

The day finally came that hubby and I got to sit down with the neuro-psyche and discuss the test results on kids 2 & 3. Some very and some not so much info acquired from all this.

Child #2 has anxiety. Severe anxiety. It prevents him from sleeping, scrambles his executive processing, slows his progress way down, triggers some OCD type behaviors, and messes with his memory. None of this was too surprising, it mostly just explained how it was really interfering with his life. The doc suggested intense counseling and some anti-anxiety meds to help him until he can get it under control himself.

Child #3 is a whole different story. The doc said he's too smart, won't be challenged until AP classes in high school, and that mostly we just need to be firmer with him. He didn't see any of the sensory, balance, motor control, lack of eye contact, autistic type behaviors. No help for screaming at school or at bath time. Just be firmer. Not what I was expecting at all.

A week later I had IEP meetings for both boys and their older brother. Everyone else was also shocked by child #3's results, commenting that they had all seen signs of Autism also. Luckily they finally said this in front of each other and they agreed to certain steps to help him. I know I'm over protective of my kids at times, but it's for a reason. It's nice when someone else recognizes that there's a purpose behind it too.

Ah, the Simple Life!

This morning's paper had an Op-Ed piece that I couldn't help but laugh at. It described a working mom's excitement over the up coming end of the school year. She told of how nice it will be to not have to fight her teenager awake or rush to drop her youngest off at day-care before heading off to work herself. She also mumbled on the struggle of juggling homework and making dinner in the evenings. This mother also made comment of the greatest joy of her summer: when grandma takes the kids for an extended visit. Not even family has ever lasted more than 2 hours with all of my kids at once and I can't remember the last time we had a true babysitter.

I know she meant well, and I don't wish her any ill will but I laugh at this women's daily struggle! She obviously does not have a child (or 3!) with Asperger's & Tourette's (child #1 age 13); OCD, sensory & anxiety issues (child#2 age 10); Autism & sensory issues (child #3 age 8) or any other problem (child #4 believes she's a princess!) that might disrupt her pretty little schedule. Maybe I'm a little bitter, maybe I'm just plain exhausted, or maybe I'm a bit fed up. Between sensitivities to light/sound/textures, allergies to food and everything else, impulsiveness, and immaturity, I am kept on my feet (sometimes literally) for a minimum of 14 hours a day.

Let me first explain that I love my kids, I know I am the only one capable of sorting out all their randomness and functioning around it. They are all very loving, VERY smart, and have good intentions in everything they do. Unfortunately they all have different things they struggle with that I alone can not correct, but that our school district/doctors/therapists/ and insurance are all unable or unwilling to help with. And so hubby and I do what we can to manage on our own.

Here's a quick over view of my fun filled day with and without school.

6:45- I and child #1 are awake. He gets dressed and feeds the dog while I get the little kids dressed and down stairs.

7:00- I make breakfast (cereal for one, waffles for the others) and begin packing lunches (no dairy or bread for #3, no protein for #2, no wheat or dairy and something the bullies can't destroy for #1).

7:20- I have 10 minutes to eat and read as much of the newspaper as possible.

7:30- Brush #1's hair (lack of OT means -like bathing- he still can't manage this on his own) and help him pack his backpack. Being 13 should have meant more independence. Instead it means more maneuvering on my part to make him look independent enough that people leave him alone.

7:45- #1 and hubby out the door, I have 25 minutes to get myself ready for the day.

8:10- Brush #4's long curls into a pony, convince her and #2 to get their shoes on, and begin the battle with #3. This will take the next 35 minutes, involve plenty of screaming & tears, and is unlikely to end well for anyone. But that's what it will take to get him to school.

8:45- Give up with #3, bring him back to the car. Child #2 was removed from school in February thanks to his anxiety and another boys bullying. Now #3 is home also. #4 starts Kindergarten in the fall.

9:00- Run errands, hoping the store isn't crowded. Child #3 is staggering down the aisle with his arms in his shirt or compulsively touching everything he can reach. #2 complains that it's too bright/noisy/cold. I get as much as I can find that fits all their dietary needs & allergies. In the summer the trip includes #1 hopping and swinging his arms while #4 sings as loud as she can. I really need to get her a recoding contract, you know.... in my spare time.

10:00- Come home, unload car, put food away while keeping 2, 3, & 4 in sight.

10:30- Catch up on work. I work from home during the day with client meetings schedule in the evenings. I also use this time to contact medical or school staff about updates in conditions, meetings, appointments, or that bully that picked on #1 yesterday. Again this is all done in a central location where I can see to all 3 children.

11:00- Attempts at school work, housework and any other kind of work that needs to be done. Getting the kids physically active enough to work their muscles while keeping them from injuring each other or destroying the house. Child #1 requires actual physical pressure on his body (from jumping to hugging) to release the stress of keeping it together at school.

4:30- Making and eating dinner. Each meal at our house is really 2 or 3 thanks to food allergies. There's also the battle of "why can't we switch places" at the dinner table. Child #3 is a sloppy eater, to put it mildly, and #1's Tourette's has caused him to cough since age 3. Very enjoyable to sit next to while you eat.

6:00- Bath time is my personal favorite. You see, when water "feels like needles" you aren't as likely to cooperate with this time of day. Child #3 has horrible eczema that no medicine has ever really cleared up. Removing all scents from his laundry and using only "free" baby soap has helped, but not enough to avoid a fight. Once again the tears and bargaining commence

7:30- We battle our way through the bedtime routine with 3 and 4, all the while trying to remember if #3's bed was wet this morning and if so, did I wash his bedding.

8:30- Children 1 and 2 head to bed only to return at least 3 more times complaining of being unable to sleep or random other ailments.

9:00- I begin preparations for tomorrow, hoping I can get the house work done before I collapse into bed myself. All clothes are picked out and placed at the foot of the beds... except #3's. At almost 8 years old he wets his bed nearly every night still. Child #2's clothes can't have any tags and #4's socks must be inside out. And yes, I still pick out clothes for #1.

10:30- Crash in my bed and read until I can't see anymore. Reading is the key for me here, because if I don't read I'll spend all night thinking about how I'm going to make it through tomorrow. This is also the reason I created my Crazy Mom line... everyone needs an outlet!

So all you happy moms that are excited for school to be out and your lives to relax, enjoy your laid back schedule, that peace and quiet when they go to grandma's, and spend an extra day at the spa for me. I'll be where I always am: at home, caring for my children.

Back to the Beginning

We had known for a while that something was "different" but it took the kindly advice of our son's Speech Therapist to really open our eyes to what exactly was going on. Son A had been in speech and occupational therapy from age 4 to age 6. Due to frequent ear infections as an infant his speech was unclear and his balance was awful. We were also told he had sensory integration deficit and proprioception problems, but no one ever suggested what more could be done or what these really meant.

When he was 6 the Navy sent us to California where all therapy stopped. Since he was ahead of his class academically (he'd taught himself to read at 3 1/2) they didn't see the need for assistance. Besides that, they only had one therapist for the district which covered 8 schools in three counties. Thank goodness for understanding teachers that ignored his hopping in line and repetitive coughing. And so it was that therapy ceased and A regressed. Well, maybe regressed is too strong. I guess he just stopped progressing.

A turned 9 the Spring before we returned to Washington State, leaving the Navy and returning home to the Tri-Cities. Fourth grade wasn't horrible, but I could see him fitting in less and less. He was however back in speech. By the beginning of his fifth grade year I had begun fighting hard to get him help. He had been coughing since the age of 3 and nothing we had done had ever helped at all. He was having hysterical crying episodes at least once a week, his eye contact had gotten spottier, and he was not functioning motor wise at par with his peers.

His doctor and teacher suggested ADHD, for which he began medicated . After 3 months and 4 different meds he hallucinated at 6am one morning. Screaming, crying, piling furniture in front of his bedroom door to keep us out. It was very frightening. That's the day we stopped giving him medicine. It's also about the same time I stopped writing this blog.

We had him tested for food allergies and he came up positive for more than 25, not including all their sub-foods. It was at this same time that his that his Speech Therapist mentioned Asperger's Syndrome. Being computer crazy, I immediately looked it up online was overjoyed and somewhat overwhelmed by what I found. My son fit every one of the criteria... gross motor, eye contact, IQ, obsessiveness with a subject, it was all there. I was so excited! It had a name, I wasn't crazy and overprotective, something was really wrong! But it was Autism... why hadn't anyone mentioned Autism before? Why didn't I know more about Autism? How had I, and so many others, missed something that seemed so obvious to me.

It was February of 2006 before I was able to have him officially tested by a pediatric neuro-psychologist. And what she found stunned me even more. It wasn't just Asperger's, it was also Tourette's and tremors and low muscle tone on his left side and Sensory Integration Deficit and, and, and.... How had ALL of this been missed? We took him off all medication immediately and for the first time in 8 years he stopped coughing! Somthing he had been given Asthma meds, allergy meds, and a myriad of other things for turned out to be Tourette's.

A month later I left for 5th grade camp with him. I didn't realize until the second day of camp that I was not only still in denial but still in shock also. That was the day that his group went out to the woods to learn fire building. He spent the entire hour and a half 30 feet from the group hanging upside down over a log. Amazingly though, on the last night of camp they played a Jeopardy game and he answered every question about fire building correctly. He had heard it all, but he needed to be away from the group to process it. It was so hard for me to watch how truly separated he was from the other kids. I was amazed also, and extremely grateful, at how protective they were of him.

This was the beginning of the journey for us. A journey that has taken a few twists and is no where near finished, but has brought me closer to my children.

Where to begin...

A sister of mine, one of many, mentioned recently that I need a place to vent. Being on my computer 2/3 of the day I immediately thought of blogging and then remembered that I used to have a blog. I hadn't realized just how long it's been since I've posted. Two and a half years. And what a wild chunk of time that has been.

In the last two and a half years my family has entered the worlds of Autism, Tourrette's, OCD, intense food allergies, and extreme Sensory Integration Disorder. We have also entered middle school, begun home schooling, and seen our youngest start school. We have changed vehicles twice, jobs 3 times, and all but completely halted remodeling on our home. We have gained 3 new cousins and are anxiously awaiting the arrivals of 3 more.

Yes, it's been an interesting time for us. Now I will attempt to fill in the gaps.