Apr 7, 2013

Adventures with Ahren's shares our autism story.

If I tell you that this is Autism Awareness month, I will ask that you not stop reading.  I know, you are well aware of this month and are being bombarded from every media outlet known, however, I want to share my personal account of what our family lives with when we tell someone that two of the four of us is autistic.

The hubs was always a little quirky.  Not that you could actually meet him and know the word autism was his link, but something just "wasn't right."  All my family and friends would just laugh it off and we would all look at each other and nod when he said or did something that was intrinsic to his way.  (Intrinsic.  Ewww... Ahhhh... That was fancy, right?)  He is, at best, socially awkward, even at home.  Luckily, we found a marriage counselor who was able to test and diagnose him, even in his late 30's.  I knew that if he accepted what I had been telling him, he might be more open to change.  I was right.

He is still very weird about change in plans and other small issues that go with the spectrum, but in general, his biggest handicap is communication due to severe hearing loss.  He was fitted with his first hearing aides when we were dating.  While still at a disadvantage, they do seem to help.

We have two children, a son, 7 year-old, Charlie.  Our daughter came exactly fourteen months later.  She is in kindergarten, and he is in first grade.  After we had his first birthday party, an in-law sent home some paper work with the hubs about autism, and how they thought this information would be useful to educate ourselves with.  Well, I was due with my daughter in the following two months, and honestly, that is not something you want to burden a pregnant mother with.  I was so angered, and hence, a seed was planted.  Over the following year, I read, researched, studied, and found everything I could on autism.  While Charlie was delayed in everything, all THREE of his pediatricians said he was fine.  At his second birthday, I knew.

My anger turned to sorrow and loss.  This wasn't what I imagined it would be like.  I had a hard enough time having two so close in age, yet one so behind and the other, quickly passing him on all the developmental milestones.  The night I read Jenny McCarthy's first book on Autism, I read it cover to cover, and cried, had panic attacks, and started cross referencing things I was reading about.  I was a medical assistant at the time, and medical jargon is like a second language to me, so I was fascinated to learn about the diets, supplements, and how biomedical treatments aided in their recovery.  Yes.  I used the word "recovery."  I finished the book, walked into the master bedroom, and told my husband that we were going to recover our son, and that I fully accepted that he was autistic.

I was unable to make any progress on my own.  I learned of all the organizations and all the support groups, but first, I went and paid out of pocket (thousands of dollars) to have him privately tested since all three of the pediatricians I saw refused to write a referral for him.  Without a referral, my insurance would not cover the cost of evaluations.  Unfortunately, Georgia is not a state you want to raise a special needs child in.  There is much more funding for disabilities in other states.  The north is actually really good about providing services, but we were in no position to move at that time, therefore, we have done all that we could, within our means.

After three separate days of evaluations, we returned to Dr. Robert Montgomery for the results.  He sat us down in his office, talked about many of the results, and finally, he must have sensed that I was not only ONE DAY post gall bladder removal surgery, but about a year into learning what I had researched well enough that I felt I should have written in medical journals about it.  "Mr. and Mrs. Ahrens, your son does, in fact, have autism."  I was happy to finally have the results, and was more than ready to move past the formality of going over each diagnosis, but rather, to move on to the "how do we fix this" part.  I can handle anything.  I just wanted to know.  Then, I quickly go into this solving mode.      This carries over in all aspects of life.  Lucky for those around me, I will always find a way to "fix" things.

Within the month, I had secured funding from family for him to be in an intensive ABA program that was five days a week, at $2,000 a month.  I had quit my job in order to take care of his therapy needs, and once we got really moving, he was evaluated for speech and occupation therapy needs.  We learned that his seemingly inability to feel pain was due to sensory integration dysfunction.  That also explained his love of spinning in circles for hours on end each day.  Or, as he did for hours during his evaluations, when given a room of toys to play with, he would chose a little Matchbox car, and run it along his entire body until someone took that toy out of his hand.  I learned, early on, to guide his "massaging" to my own back, and if I was lucky, I would get a massage as I nursed his little sister, and cried for the little boy who couldn't talk, sign, or even play with toys, normally.  Speech found that he had severe apraxia, and because he was under the "Babies Can't Wait" program, they found a lovely music therapist to come to our home each week.  I suppose babies CAN wait, since he didn't get his first speech therapist until his was nearly four years old.  His occupation therapist was really amazing at educating me.  She provided me with the brushing technique, and to this day, he still enjoys that.  We also set up a sensory play room for him.  Our favorite was a pack and play that housed a ton of huge pillows and other sensory objects for him to lie in.  We quickly learned that a weighted blanket, and weighted vests were also amazingly therapeutic for him.  He would not throw himself down as much.  Essentially, we were becoming therapists as the days wore on.

While he was always a happy, easy baby to care for, he was very ill from the the beginning, and spent nearly the first 14 months of his life on antibiotics.  I would venture to guess that he had about 16-20 rounds of antibiotics for ear infections and surgeries by that time.  Not once did I give a probiotic.  I, with the help of DOCTORS, killed his intestinal gut flora.  And from what I have learned- however the gut flora ends up by two years of age, becomes the norm that it will reset to for the rest of his life.  So, with a high yeast content, and an overgrowth of bacteria, we had a child with leaky gut that didn't get proper treatment until he was almost four years old.  Right before his third birthday, he had his very first "normal" bowel movement.  To this day, we still struggle with bowel issues with him, however, I have left the expense of the gluten/casein free diet, as well as the supplementation, and luckily, he is managing to adjust.  He was on all of that for four years.  It was one of the hardest parts of his recovery.  I would do it all over again, and trust that I did exactly what needed to be done.  From vitamin B12 shots that I gave at home every third day, to grinding up to 14 pills and mixing into a peanut butter sandwich I made on rice cakes, we got creative, and we saw results.  I had help from a doctor about an hour away from our home for almost a year, and the rest of the time, I treated him, based on what I was researching.  I sent away for testing I ordered myself, from Great Plains Labs.  I paid out of pocket, got the results, and walked into his pediatrician, who laughed and told me he would not treat the values that were abnormal. When I found the pediatrician in Tyrone, Ga, he put my son on months worth of anti fungals and an extremely dangerous to take antibiotic called Vancomycin.  I had known of this as an intravenous medication that was administered in hospitals for MRSA patients from the days of working in infectious disease.  I was sorta' freaked out.  I knew damage to the liver was a potential side effect, but with prayerful guidance, I felt like it was a chance worth taking.  Luckily, we saw the result of it within the month.

So, where is he now?  He is seven, in first grade, gets pulled out of class for special reading and language arts instruction due to learning deficits, and also receives speech and occupational therapy at school.  He sees his private speech therapist only once a week now, and his sister will jump to correct him when I am not at his side.  He learned to swim, unassisted, at nine months old.  He learned to ride a two wheel bike right after he turned five. This past summer, he did his first cart wheel out of nowhere, and after enrolling him in the YMCA gymnastics program, we quickly learned that his abilities far surpassed that program, and were encouraged to move him to another gym.  We found one, and after the third class, his coach suggested he join the advanced class next Fall, when they open enrollment again.  We bought him a trampoline for his birthday, had Grandpa build a bar and a beam, and ordered the nicest mat possible.  We learned that after school, he can do some back handsprings and practice spelling at the same time.  Connecting movement engages his long term learning, and his brain seems to be less "foggy."

Sounds dreamy, right?  Well, some moments are.  He is still in a night time pull up.  I accidentally bought the girl ones today, and sadly, he was more excited about that then the boy ones.  He has no boys that he plays with, and he and his little sister have this role reversal thing happening, and in general, they are each other's best buds.  She has been his translator for us from early on, and he adores her more than anyone in the world.  (I think sister even beats out Grandma!)  Education is his biggest challenge, next to relating neurotypically.

When I mention that he is on the autism spectrum, people, even educators, say, "I never would have known!"  Well, that is because he is a charming, sweet, sensitive child that in general, wants to please everyone around him, and to stay out of trouble.  He never tantrums, or has issue with change, loud noise, etc.  At school, he is a freakin' angel! EVERYONE knows and loves that kid.  He holds doors open for girls.  He never talks in school, so he stays out of trouble.  His one friend in school is the sweetest little girl that he says he will marry one day.  That gives me hope, seeing as he prefers to play the part of the princess more than the prince or the daddy, when playing make believe.  He can not watch most movies or TV shows since he is afraid of virtually EVERYTHING!  We don't have a TV service at home, and haven't for about 3 years now.  However, even the Disney movies scare him, so it is hard to attempt a movie rental or Netflix.  At dinner tonight, he insisted on rubbing and kissing on my father's head.  It was weird.  Even after we asked him to stop, he continued, without even realizing he was doing it.  Hugging on him is easy, but being hugged in return is hard.  He hugs you the way he wants to be hugged-- hard!  His speech is still very stressful to hear.  Understanding him is really hit or miss, and if you spend enough time with him, you can learn to piece things together well enough.  I am his mom, and even I need help.  Speech frustrates him easily, and who could blame him?

While he no longer has those small seizures where he would lay down and stare off into space on pavement, grass, bathroom floors, etc., he occasionally loses focus and you have to bring him "back."  Sometimes, I want to go "there" with him.  I want to be in his brain.  I want to see and experience the world as he does.  Other times, I am grateful I don't have too, and wonder if I am doing all I can for him.  While I am not only the mother to this amazing gift from G-d, I also play the part of WIFE to a man on the autism spectrum.

Yep.  Not until we were seven years into marriage did we learn that the quirkiness that is my husband is all tied to the spectrum.  Today, April 7, is my ten year anniversary.  It sucked scissors.  Autism, or just normal rut in marriage, it was a struggle.  After years of "training," my husband knows that I demand to be treated like a lady.  All that means is that I want doors opened for me.  I have successfully instilled this and the "lady's first" rule into my son.  He loves holding the door open in public.  Not such a fan of letting me brush his sister's teeth first, or for letting her get in the car first.  Anyway, we were leaving the restaurant, and I was steps ahead of everyone, and was simply going to step aside and wait for the hubs to arrive to open the door.  Instead, he yells, "No you don't open that!  I got it!"  I mean, across the length of the room.  Wow.  That really made me feel fantastical.  NOT. He didn't get the awkwardness of that.  I, the wife of ten years, explained it, in hopes that he will learn.  It's not that it's the worst thing in the world, but for years, I have had to be the social etiquette police with my own husband, and believe it or not, he has made progress.  It's just that while I do love him, it's a struggle to be wife and not mom some days with him.  I know I am not alone on this, and luckily for me, his world revolves around my needs and happiness.

So, while being mom to a child with autism is easier than being wife to one, it is what I was given, and when it comes down to it, I love my family, and will work forever to help it evolve, grow, mature and develop into whatever He has in store for us.  I am proud of both of my children for their amazing manners, kindness, consideration they give to others, and the love they share with anyone.  There is laughter amongst the sorrows, and tears amongst the triumphs from struggles.  We a family of four with a gorgeous rescue Collie,  in a home with a white picket fence, and some days, we forget about autism, therapies, night time pull ups, academic struggles, and speech disorders that makes us laugh when my son used to refer to his teddy bear as a "titty whore."    Good times.  That's all I can say about that ;o)

If you know someone on the spectrum, as we know many, you will see that they are all so different in their abilities and their needs.  Our family is fortunate to have a child that has no behavior challenges.  Most do.  Most have severe issues, and for us, our severity is only measured by our life.  I would venture to say that I have recovered my son like a recovering alcoholic is still an alcoholic.  Charlie is recovered to the point that he has learned to blend in with the crowd.

Not all children will have the same recovery story.  I love to share ours.  I feel like I was given this life and the ability to share it, for a reason.  Please share this story with anyone you believe might benefit.  Send them my way, and I am always available to talk about journey.  

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