Our Autism Journey And Why It Took So Long To Find An Answer

Samuel showing off his temporary tattoo at the class Valentine's party this year.

Samuel showing off his temporary tattoo at the class Valentine’s party this year.

April is Autism Awareness Month and today, April 2, is World Autism Day.  As most of you know, my oldest son has autism.  We are often asked about our journey so I figured I would start from the beginning and tell the whole story. Warning, this is very long but I felt it all needed to be there to show the true story.

Samuel was born at 41 weeks with a very fast, very easy birth.  The pregnancy was a dream pregnancy – very little aches and pains, no complications, etc. (my other two pregnancies are an entirely different story and I will save that for a different post).

Easy ended at that point and we were quickly thrown into reality.  We were first time parents so we didn’t realize that his first year was really more difficult than it should have been.  Samuel rarely slept, he was around 14 months before he slept through the night and then it was many more months before that was consistent.  Naps were 30-45 minutes and many times they were while I was holding him.  He would only play if I was nearby and constantly needed my attention.

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As he got older, his behavior was out of control.  I’m pretty sure some of the church nursery workers cringed when they saw him coming.  His behavior was much worse for me than others though so many didn’t see the worst of it.  It wasn’t until his fourth birthday that reality started sinking in.  He hit his Sunday School teacher and the behavior started escalating from there.  The preschool director at church was finally seeing what I had been telling her for years and agreed to help us any way we could with getting him help.

Our pediatrician at the time was completely worthless. Every time we had asked for help over the previous year he always told us Samuel was just a boy and we were first time parents so give it time.  I had worked in the church nursery long enough to know something was different with my child but I had no clue what that was.  We finally pushed hard enough with the doctor that he gave us a referral to some counseling.

The only place our insurance would take was a local behavioral health center that offers a ton of different services.  The initial evaluation was a joke and the only answer we received was that we didn’t know how to parent so we needed to enrolled in Parent Child Interaction Therapy (PCIT).  We didn’t believe this to be true but willingly did it so that someone else could see what we were seeing.  By the second session the therapist was teaching us restraints for our child (a much later lesson) because it was clear he needed them.  At the end of that session, she told us we were doing everything right and were not the issue, Samuel was the one that needed more help.

Our therapist at the time was a semi-retired lady who almost felt like a grandma to us.  She could tell we were doing everything we could for our child and no one was listening.  She told us to keep coming to therapy once a week and she was going to ask around the building to see where Samuel needed to be.  Eventually he landed upstairs in the Autism Clinic for an OT evaluation.  It was at that evaluation that I learned all about mid-line crossing, core strength, the importance of tummy time, etc.  All brand new concepts to me and I wondered why no one ever told new parents these were things to be watching for.

Samuel and Eli playing on the floor.

Samuel and Eli playing on the floor.

We did OT for about a year, right up until our insurance changed.  We had an amazing OT who tried extremely hard to get us in with one of the doctor’s on staff for an evaluation.  He was the center of almost every therapy staff meeting because no one could pinpoint what was wrong but his behavior was so out of control that he needed help.  That evaluation never came though due to our insurance changing and wait lists.

With our new insurance, we knew of one doctor in town that was known for treating kids with ADHD and other issues.  We tried to get in with him and he thought we were drug seekers so he turned us down. We were devastated as we thought he was our answer.  We prayed about it and asked our OT if she had any suggestions.  She wasn’t familiar with our new hospital system but had the secretary go through files to see if any of their docs had referred to their behavior center.  Thankfully, a few had and one stood out the most.  After much prayer we felt he was the pediatrician we needed to try.

We were nervous at that first appointment because we had been through so much and were burned by the last pediatrician (by the way, he was our second pediatrician over the years as insurance previously changed – our first ped was amazing).  Turns out, this guy was the answer to our prayers.  Within minutes of meeting Samuel he asked if we had ever considered ADHD or Autism.  We hadn’t even brought up our concerns yet so we instantly felt at peace with this doctor. This hospital system just happened to be opening a new Autism clinic in their pediatric therapy area and this doctor was going to be the physician overseeing the clinic.  It wasn’t opened yet and since this system caters to the Medicaid crowd, they had planned to see Medicaid patients first.  The doctor went to the head of the hospital and pleaded for us to get in much quicker due to the fact that my husband is an employee of the system and Samuel clearly needed help.

In the meantime, his teacher and us filled out the Vanderbilt survey that is used to diagnose ADHD.  Usually the survey has to be scored but our doctor said before he even started scoring, he could tell just by looking at it that we had a problem.  At this point, we were exhausted parents with now two kids and had tried every option we could find to help our oldest.  We gladly accepted trying medication.  Samuel was 5 and in pre-k when we started him on medication.  Most doctors will not start this early but it was clear that he needed help.  The first few trials were rough because apparently Samuel has inherited my issue with meds where crazy weird reactions happen.  We ran out of liquid meds he could try and then set out to teach a barely five year old how to take pills.  He learned quicker than any of us thought he would so after a two week break from meds were were back on the journey to find the right combination for him.

Mommy & Samuel

Samuel and I on a field trip in pre-k.

Let me inject here with a quick note that Samuel’s preschool teacher at the time was amazing.  She fought for us to get services for him and kept us informed on how the meds were helping him at school.  She even caught his first reaction and let us know about it.  Our preschool minister at church was also a great support during all of this.  These two ladies believed in us and we appreciate their help getting us through those difficult year.

We started the medications in April.  That summer was probably my worst summer ever with him.  We switched one of his meds at the end of the school year and we thought his even worse behavior was due to being out of routine from school.  It didn’t hit us until almost the end of summer that it was the meds causing the issue.  We changed them and saw a much better behaved child.

Samuel's first time at a beach.  We were at Lake Michigan visiting his cousins.

Samuel’s first time at a beach. We were at Lake Michigan visiting his cousins.

Finally, during the first week of kindergarten, Samuel was able to go for his autism evaluation.  It was a two day process as the child sees the OT, PT, speech therapist, autism specialist, pediatrician (we were able to skip this one as he knew us well by then), and neuropsychologist.  The parents also had a session with the neuropsychologist.  At the end of the second day everyone takes a two hour break while the entire team gets together and discusses the evaluation. Then we came back and they gave us the diagnosis.  We were shocked to find that it was ADHD and anxiety, not autism.  Our pediatrician still whole-heartedly believed it was autism but according to the DSM at the time, Samuel did not meet the requirements.  He very much had some spectrum issues but not enough to qualify.  The neuropsychologist told us that some behaviors become much more clear over time as to weather they are due to age or something else.  She asked us to do another evaluation in 18 months to 2 year.

In the meantime, we began our journey through intense therapy.  Samuel began attending OT and speech twice a week, PT once a week, and behavior therapy every other week (it was with a different hospital system and that was all we could afford).  He had been doing speech through the schools since he was barely four (I started asking for help at 2 1/2, yet again another long journey) and was making very little progress so it made sense to add in the medical side instead of just the educational side of speech.  Our life suddenly revolved around therapy.  It was very tough but so worth it.

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Fast forward to 18 months later.  Our third child has just been born and we go back to the clinic and ask for an appointment for the re-evaluation.  We are told they are still trying to figure out how to get insurance to pay for it.  After months and months of this, we talk to his therapists and they all agree that it would be better to get an outside opinion.  All of them knew him too well and insurance was still causing issues so we agreed.  We paid out of pocket to go to an independent place that came very highly recommended.

By this time, Samuel was 7 and in 2nd grade.  Due to having an entire notebook full of evaluations, IEPS and progress reports, this time we only needed to spend a half day going through the evaluation.  This time we had to wait a week for the results so that they had enough time to grade all the evaluations and formulate a diagnosis.  By this time the DSM had also changed and there was no longer different spectrum disorders, it was all labeled simply as autism.  He clearly met the diagnosis this time.  I fully expected to be down about it but instead my husband and I saw it as a relief.  It had taken 3 1/2 years to get the diagnosis that we truly believe he had all along.  While it didn’t change who he was or how many of his therapies were performed, it did help us to get a glimpse into his world.  We could now understand more of his quirks and come up with some new tactics for behavior that work better with the autism brain than the the ADHD only brain.

First day of 2nd grade.

First day of 2nd grade.

We asked why it took so long to get a diagnosis.  Although this therapist did not know Samuel before that day, she explained that when he had his first evaluation, his ADHD was off the charts out of control.  Many things they attributed to that instead of autism.  One example is eye contact.  This is a common issue with children with autism.  However, Samuel’s eyes were darting all over the place instead of just looking away.  They felt this was ADHD, not autism.  In fact, at that first evaluation, I remember them telling me that Samuel medicated is more like a regular ADHD child not medicated.

Fast forward to now, a little over a year later.  We now have Samuel’s medication under control.  Due to the price, we can’t afford the meds that work the best for him all the time so the first two hours of every day are beyond rough.  Once they kick in, he is a wonderful child to be around.  He graduated from OT and speech this year, and PT last year.  He is still in behavior therapy and will probably have some form of this the rest of his life.  His social skills are behind, as is typical of a child with autism.  The funny thing is, this child barely said a word before age 3 and now he doesn’t stop talking.  Neither does his middle brother.  The poor third child can’t get a word in edge wise so he has chosen just to not talk.  He has big words when he does talk so we aren’t too worried about his speech just yet.

It was a long journey, but we believe God gave us every single roadblock along the way for a purpose.  My passion in all of this has been in helping other moms become the best mom they can be for their particular child.  I’m not sure I would have found that passion had I not gone through this journey.  All children are unique in their own way and we, as parents, need to advocate for them and do whatever it takes to help them on their journey towards adulthood.

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