My Family's Journey With Autism -Part 2

I'm back for part 2.  For those of you just reading this, start here.

So, I was with my 3 year old and 20 month old at the Pediatric Ophthalmologist.  I had taken my son in for a drifting eye.  I was feeling a bit Munchauseny at this point for taking my son to yet another doctor.  The doctor was lovely, but I immediately knew something was wrong when she got not 1, but 3 colleagues to come take a look at my son's eyes.  She said very calmly.

"Your son has unusually large optic nerves, we typically see this with brain tumors.  I'm sure he is fine, but we need to schedule an MRI anyway. Oh, and he is extremely far sighted and needs glasses and has a lazy eye that needs patched daily." 

I felt like I was being punched in the stomach.  I felt my world spinning around me, at the same time I had 2 crying kids complaining they were starving and had to go potty.  I'm not sure how I even made it back to the car.  I remember calling my husband who was at work and in between sobs telling him the news.

I pulled it together and went to the nearest Lens Crafters and bought my son his much needed glasses.   As I got to the mall, I had 2 crabby kids and I was feeling like the worst mom on the planet for not knowing my child needed glasses.  They had 1 pair to choose from for toddlers and they looked huge on him.  They also couldn't do anything special to the lenses to make them NOT look like coke bottles and they were thick!  In about an hour, they brought them to me and I teared up as I put them on my sweet boy.  But God knew this was hard on me and he provided me with the sweetest gift.  Up to this point, my son had not yet called me mama.  But as soon as I put those glasses on him, he looked at me, cupped my face with his hands and looked me square in the eyes and said "MAMA.

We went home and the next 4 weeks were a blur, as that's how long we had to wait to have an MRI.  I tried my hardest to not research brain tumors, but any human with a computer knows how that goes.  I prayed and prayed.  For me, this was a point in my faith when a peace passed over me and I knew whatever it was, it would be ok.  We were able to special order some better fitting glasses with thinner lenses.  He looked stinking adorable with his glasses.  I heard so many horror stories about toddlers and glasses and he was a dream, he never complained and in the beginning didn't even mind patching. 

Finally, the day arrived for the MRI and we had to leave our home at 5 am for a 7 am appointment.  My hubby and 3 year old came with us.  They gave our son something to help him relax and if I remember correctly the procedure only took about 30 min.  Thankfully, God answered our prayers and he did not have a brain tumor.  It is noted that he has "unusually large optic nerves" and they said if he ever goes to the emergency room for head trauma, be sure to tell them this, because they will think swelling of the brain is causing it. 

By this point, my sweet boy was not even 2 and I had had about enough of the medical community freaking me out, only to leave me with no answers.  I started taking his health in my own hands.  I researched and found a Gastroenterologist that offered testing  from home for food intolerance and digestive issues.  I was desperate for answers and ordered them right away.  At the time, this felt a bit weird and strange, but the standard medical community was at a loss of what to do.  Now, this was right about the time "healing" autism was starting to pick up steam, but the websites and blogs were not saturated with info like today.  Also, this holistic, type of medicine, is very expensive and insurance does not cover it.  My pediatrician, told me not to waste my money, but any mother with a sick child knows that sort of advice doesn't hold clout with a mother looking for answers.  

I saved some poop and sent off the tests.  The results were that he had an intolerance to gluten, dairy and soy.  On his second birthday I took away all three foods from his diet.  What happened next amazed even the naysayer doctors.

 It was like a light switch went off.  My son started talking and in a 2 month time period, went from a 6 month language delay, to no delay at all.  He went from being clingy and lethargic to the Energizer bunny!  He was into everything.  He explored  everything.  The Pediatrician was really amazed, but would never admit it was the diet, she just thought he was a late bloomer.  After 3 months on this diet, he was able to stop iron supplements and for the first time since he had Salmonella had normal looking poop.    His growth pattern did not improve, he was still in the 1% in height and weight.  Those of you that know me personally, know I am a itty bitty thing.  I'm 100 lbs and 5'2 .  But even so, the smallest my kids should be is in the 30% they said.  So this was still a concern.

So they sent us to be tested by Endocrinology.   At our local children's hospital they wanted us to put our son on Human Growth Hormone, at the tune of $3000 a month.  Of course, insurance would pay for 80%, but still, that is a shot EVERYDAY for the next 15 years.  Since he did not have a growth hormone deficiency, this was purely cosmetic and he may only achieve 1-3 inches in added height.

So, I hopped on a plane to John Hopkins, for a second opinion.  I decided early on, when one doctor tells me to do something drastic to my child, I will find the best doctor in the field in the country and see if they agree.  Guess what, he didn't.. he said,

 "don't do growth hormone yet,  your son is in the 1%, someone has to be.  If you want more answers go to a Geneticist. "

  
At this point, my son was 2 1/2.  In the small town I lived in "everyone" put there kids in a mother's day out program.  I was desperate for a break.  With no family in town and a hubby that worked a long hours, not much time was spared for me to get a break My husband was a great help when he was home, but at this point we were both physically and emotionally drained.

 You see, even play dates were exhausting, my son, would not just play at others homes, he would tour them, opening every cabinet and door.  Get in showers, crawl up stairs, climb in laundry baskets. It was actually more work to be at someone else's home.  Unless the TV was on, my son was getting in something and he was quite as a mouse.  I used to put bells on his shoes, just so I could find him.  I would call and call his name and he would answer, but in a normal tone, so unless I had found him, I couldn't hear him.  He was also fearless, which is scary in a 2 year old.  He would love to climb and jump off things, the higher the better.  He was like a little monkey.  So I jumped at the chance to get 4 hours free a week.  But it turned out to be harder on me emotionally then keeping him home. 

The first week of preschool, he quietly left the classroom and was found about to leave the building, by a secretary of the church, the teacher did not even know he had gone.  He had to be watched like a hawk!  He had many sensory issues, of course at the time I had never heard of this and I had no idea what was going on with him.  The best way I know how to describe him was he had to do things "harder" then others to get the same feel.  He often stomped when he walked, hugged someone until they fell over, kissed til he
 bit,  and was like a ping pong ball bouncing off the walls.  

It didn't help,  that to me, his class seemed very calm and well behaved.  It made me feel all the more out of place and this is when the comparison to other children bothered me the most.  I felt like "that mom".  You know, the one I often thought had no control over their child.  The child, that every mother in preschool loathed, because they were often the cause of  their child's tears.  It is a very lonely, humbling place to be as a mother.  Everyday I would pick him up with a sense of dread. What are they going to tell me he did now?

I lived in a very small town, the resources were nonexistent.  I needed help, but didn't know what to do.  We had no diagnosis and my son did not have enough of a delay to qualify for the early intervention program.  We saw results with the gluten and dairy free diet, but it was hard to implement (remember this was 5 years ago in a small town, I would have to order everything online and drive 1 1/2 hours for bread).  We were also seeing a holistic doctor and while she was helpful, her prices were insane and not covered by insurance.  

During this time, we also lived in a home that was like the money pit....that is another series in itself....but at this particular moment, on Christmas Eve, we had a frozen water pipe burst and do $35,000 worth of damage and cause 6 weeks of remodeling on our home (thank God for insurance).  To say the least it was very stressful on both me and my husband.  

We went back to the Developmental Pediatrician, when he turned 3.  He said...

I think he is one of those kids, that is borderline, he doesn't really fit in any diagnostic box, if anything he has signs of ADHD, but is really to young to be sure.    Just keep doing what your doing.  There is no reason to come back and see me again, until he is school age.  

Again, I was relieved, but I wanted answers.   By the end the school year, the teacher  pulled me aside and suggested I take him to be evaluated by an Occupational therapist.  She diagnosed him with Sensory Processing Disorder.  I finally had a lead and bought every book I could on the subject. 

I knew my son needed support and it became up to me to give it too him, then God did the most amazing thing, just when I was at my lowest point!  

Stay tuned for part 3......

 

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