This is just the beginning of our journey…

Hello everyone.  I am back from a short online hiatus.  For the last few months, and more intensely the last few weeks, we have been going through Autism assessments with my 3 1/2 year old son, Jeremy.  It has been an emotional ride, mostly for my husband and I, with lots of ups and downs.  But so far, these assessments have just confirmed what I have already suspected.  My beautiful son has High-Functioning Autism (HFA) Spectrum Disorder and Sensory Processing Disorder (SPD).

What is Autism and Sensory Processing Disorder?

Autism is not a disease.  It is a developmental neurobiological difference in brain functions.  According to the National Institute of Neurological Disorders and Strokes (NINDS) Autism Spectrum Disorder (ASD) is characterized by reciprocal social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.  Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that 1 out of 88 children age 8 will have an ASD.  Males are four times more likely to have an ASD than females.  

The following is from the Sensory Processing Disorder Foundation :

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.  In children who are gifted and those with ADHD, Autism, and fragile X syndrome, the prevalence of SPD is much higher than in the general population.

How did we know?

As registered nurses, my husband and I were educated on the signs and symptoms of ASD.  Jeremy met all of his physical milestones very early on (rolling over, sitting up, crawling, walking) but it was his lack of language development that I began to worry about.  He babbled, cooed and began to say one syllable words, but then nothing more.  Instead of continuing to develop his language and speaking, he plateaued.  Speaking with our pediatrician about this, she encouraged us to narrate our day and sing about what we were doing.  After a week of that, he began to improve.  He met most of his developmental milestones in language and social interaction, just way later than other children his age. 

More than the language delay, my husband and I really noticed his problems processing sensory information. SPD is not something that I learned in dept about, as I did with ASD, in nursing school.  I began to notice his “picky eating” a lot more, especially with certain textures.  When we were in a new, unfamiliar place or situation with a lot “going on” Jeremy seemed to be oversensitive to everything going on, and it was “too much” for him to handle.  He seemed overstimulated and got fussy or irritated easily.  Even though he was hungry, he wouldn’t eat, until he got back into his car seat or another familiar space.  AND then he would just melt down.  Not like a temper tantrum, a MELT DOWN.  He would get so upset to point of becoming physically ill.  It is awful to go through. 

Where we began looking for help.

Again I voiced my concerns with our pediatrician.  She suggested we see contact the school district we belong to, to begin assessments with a speech and occupational therapist.  That led to assessments by the school psychologist, nurse, and transitional preschool teacher.  It was this team of educational professionals that told us our son has a lot of “autistic-like” behaviors and would definitely benefit from special education.  In the end, we ended with something called an IEP (individualized education program) just for Jeremy. 

So unofficially, Jeremy has HFA and SPD.  I say unofficially because this multidisciplinary team at our school district is not certified to make an official diagnosis, but with more than 60 years of combined experience with working with kids with all kinds of disabilities, including ASD, I felt confident in their assessment and recommendations. Jeremy has started speech and occupational therapy, and he will begin a specialized preschool for kids with Autism.

Our next step is to meet with a developmental pediatrician/neurologist/pyschatrist.  This doctor(s) will either agree or disagree with the school’s assessment of Jeremy’s autism status.  He will also look for any other causes or illnesses that may be contributing to his delay. 

Just to clarify, Jeremy doesn’t need an official Autism diagnosis to receive access to special education services.  The assessment the school performed and the results they drew were enough to make an offer for help.  I am not sure if an official diagnosis of HFA will help or hurt my son, but I do know that it opens him up to a world of additional services. 

If you suspect that your child might be Autistic or have any kind of delay, start with your pediatrician.  I have always found a mother’s gut instinct to be right.

The journey continues…

There has been A LOT going on in our home.  Going to all these appointments with Jeremy and just making sure that I give enough time to my little Sierra has left little to no time for myself or Scott.  I have just now began to emotionally process everything that has been going on.  I grieved for my son, a little bit.  Of the dreams and aspirations that I had for him.  But being with him and watching him make improvements and advancements in his language skills and social interactions, I know that he will be just fine.  I have been working hard at home with him, doing our own thing.  And sometimes I think, there is nothing wrong with kid!  He’s just like every other little boy; sweet, rambunctious, a daredevil, and so, so smart. 

It’s hard at times.  I barely know how to parent a “normal” child, let a lone a child with special needs.  I began to research support groups and classes in my area for parents with autistic children.  I just want to be the best parent I can be, for Jeremy and Sierra.  I want what other parents want for their kids, to give both of them enough support to become happy, fulfilled, productive, independent adults.

I will begin to post on a regular basis again and I will follow up with additional articles of our Autism Journey and resources for others who may be going through the same journey.  Thanks for listening.