April is Autism Awareness month. World Autism Awareness Day is April 2nd. Many people put up blue lights or wear blue – all to join Autism Speaks to shine a light on Autism by raising awareness. It begins April 2nd and lasts all month long. Many are doing this in support of friends and family and many of us are living it every day and are grateful for this awareness! Check out World Autism Awareness Day on Facebook as well! 1 in 88 people are on the Autism Spectrum. Do you want to help? Visit my Light it Up Blue page to learn more and make a donation to Autism Speaks.
I wanted to share our personal journey with Autism as every story is different. Our oldest son who will be turning 8 at the end of the month has PDD-NOS, which stands for Pervasive Developmental Disorder – Not Otherwise Specified. For those that are familiar with Autism Spectrum Disorders you are probably familiar with PDD-NOS. Those that aren’t have probably never heard of it, and you might not anymore as there is discussion that they are going to start grouping everything into “Autism Spectrum Disorder.”
To sum it up – Brayden is high functioning on the Autism Spectrum. Sometimes a “high functioning” diagnosis can be both a blessing (because it absolutely is a HUGE blessing) and a downfall (for insurance purposes). Brayden currently receives Speech Therapy and Occupational Therapy, but even getting both of those is a push on our insurance because he is high functioning. He has never qualified for special services such as Applied Behavioral Analysis, which is covered under an insurance “extension” because he is high functioning (or mild by their definition), and it must be at least moderate to severe to qualify.
So, being an advocate for him has been frustrating at times! In that way, we have had to learn a lot about the Autism Spectrum and how to best help him. Because I homeschool I am blessed to be able to work with his special needs and be sure he is getting the help he needs?
So how do you know?
I often hear or get asked how do you know if your child is on the Autism Spectrum? I mean we also have two children with Sensory Processing Disorder as well – how are they different? Well, that’s for another blog, but my best answer to how do you know is this – go with your gut instinct. Whether it is an Autism Spectrum Disorder or something else – if you feel there is something “different” talk to your child’s healthcare provider about your concerns. If you feel they aren’t listening then push for answers!
Maybe it’s nothing, but maybe it is something. There may even be some incorrect diagnosis along the way or people ignoring you, but YOU know your child. I always encourage parents to ask for answers – demand answers.
Our journey with Autism actually started when Brayden was only 15 months old. He had maybe 3 words. It was definitely concerning, but to be honest, we just thought it was a speech delay at that time. He had some “different” behaviors particularly the drawn out screaming and fits which we associated with his frustration and not being able to talk. He was a happy baby. He didn’t really like to be held and liked to just kind of do his own thing.
As he entered the toddler years he went from being the happy baby to the always frustrated toddler. When he started speech therapy it was brought up that he might have PDD-NOS. When I looked it up and saw “Autism,” I have to admit my response was NO. That’s ridiculous! There is NO way! I did put the idea in the back of my mind and then moved on.
When Brayden turned 2 my husband left for Basic Training. Brayden was in an Early Intervention program at that time, and his behavior at home was escalating. I assumed it was due to having a new sister (she was 4 months old when Joey left for Basic) and daddy being gone (except he called him “mom” because that was one of the few words he had at the time). He did well in the early intervention program and did OK in our weekly early intervention play group except he just couldn’t seem to “play well” with the other kids.
Once my husband got back we had to pack up and move to his first duty station in the Washington DC area. Once getting there we hit a “reset” button for Brayden’s therapy, and that was really frustrating. At that time his behavior hit a major decline and not only did he seem mad and frustrated but he also started getting violent. It was scary! I actually feared for our daughter because of his violent tendencies. Knowing how he hurt me I was very afraid of how he could hurt her.
What was I doing wrong? Why did my happy baby become so angry and mean?? It was really disheartening! Everything I had been learning for his Early Intervention was no longer working. It was at this point that I just felt that nagging – something is “off.” This isn’t “normal,” and I don’t think it’s “bad parenting.” Many parents of children with Autism Spectrum Disorders have heard more than once, though, that it’s bad parenting!
We finally got him in for a speech evaluation, and he did qualify for therapy. I felt like speech therapy wasn’t enough, though. I felt like there is definitely something more going on here. They sent someone out to our house once a week, but it was already the end of the school year, which is what the therapy program followed as well. So, she would only get to visit 3 times. That’s all it took. Brayden had one of his MAJOR meltdowns.
He grabbed Aurora by the head (which I obviously intervened), started hitting the dog, started hitting me, and then he started throwing everything he could get his hands on – at me AND at her. When a child gets violent with an adult they have only seen a few times it raises a red flag that something more could be going on. So, although, I was MORTIFIED by this visit she was glad to see this behavior so she could recommend him for further evaluation.
I’ll cut out some of the middle here and say he was first diagnosed with ADHD and told he should be put on medication. We felt this was wrong and disagreed. After pushing for more appointments we were referred to a child psychiatrist. While I was talking to him Brayden started flipping over the chairs, shaking the weight scale, and then proceeded to dump out my purse and put a couple things in his mouth as he took out and lined up all of the pictures from my wallet. When asked if this was “normal” behavior I said yes.
He asked more about the putting things in his mouth at which point I told him he also bites and chews on almost everything wood and has left teeth marks all on his bed and our entertainment center. I was almost in tears at that point because it truly was embarrassing for me! It was then that I got my answer. He said this isn’t ADHD, although it is commonly misdiagnosed as such at a young age this is PDD-NOS. I thought back to when he was 15 months and wanted to smack myself in the face for blowing it off! Even though he explained Brayden is high-functioning I have to admit it was still a little disheartening to hear.
After my initial feeling of discouragement with an Autism Spectrum diagnosis I realized we had to move on together as a family and do the best that we can. We have to continually be an advocate for him, and this attitude has proven to be extremely helpful. Although Brayden has not qualified for certain therapies due to being high-functioning we have made sure he does get the therapy for which he does qualify and there has been major improvement! There will always be things that are “different,” but it’s who he is, and we accept it as such while helping him become the best he can be.
It’s been quite a journey. There are still good days and bad days, and we have a lot of the journey still ahead of us, but it gets easier as we go – as we learn to trust God and learn more about Autism and where Brayden is now and where he will be. We have nothing but hope for his future, and I continue to pray that as more awareness is raised for Autism many children with Autism Spectrum Disorders of various degrees have bright futures ahead. As more people learn about Autism and educate themselves and others the journey already becomes much more pleasant!
Are you on this journey as well? I would love to hear from you!