He Doesn’t Look Autistic?!

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What does autism look like?

I would be pretty wealthy if I got paid for every comment people make about my son and his autism diagnosis.

“He doesn’t look autistic”

“Oh that’s normal my kids do that too”

“Every kid seems to have it these days”

I could go on for days.. I tell myself that people are just trying to either make you feel better by these comments or they just don’t believe it. Autism does not have a certain look, a certain behavior, or a certain list of obvious symptoms. Symptoms vary from person to person. You could have only a few or you could have a whole lot!

Autism can be very unexplainable. People ask me ” Well what does he do that makes you think he’s autistic?”  I always find myself unsure of how to explain it. Dylan’s struggles are his own and I don’t feel we even need to explain it to anyone to prove anything. Autism does not look one way over another. Dylan is a beautiful kid with the prettiest blue eyes and blonde hair, his laugh is overly contagious and his kisses are the best! He is so funny and smart! but under it all he struggles with his own battles every day. We have been to many professionals who agree that he is on the spectrum.

We are doing everything we can to help him with his struggles and to hear people so quick to judge a situation they know nothing about can be frustrating. To spend an hour with him you may never notice a thing! To live with him and see his daily struggles is a whole other story. I have cried many times because of the struggles. Not only does Dylan struggle but us as his parents do too! Everyday is a challenge.

Dylan is high functioning autistic and he is beautiful, his looks do not make him autistic but his anxiety, restlessness, obsessive attachments to unusual objects, constant movements, noise sensitivity, sensory issues, need for routine, fears and many many more symptoms are what make him fall into the autism spectrum. Not his gorgeous normal looking face that greets you and invites you to play when you visit for an hour.

I just want to spread awareness for the people who don’t know what to expect when meeting someone with any level of autism. If someone says they are high functioning autistic it could mean so many things! They normally go to regular school, or jobs but, have their disorder under control the best they can. So in most cases yes they “appear” normal. There is a lot of time invested in guiding autistic children in the right direction. A lot of therapy and on going work at home to make sure they head in a direction to where they can manage their feelings on their own.

#AutismAwareness

 

 

 

 

High Functioning Autism

What is high functioning autism?

Until my son Dylan was diagnosed within the autism spectrum, I myself did not know much about it or how kids/people were diagnosed. Up until recently, the term Asperger’s was used when diagnosing. My understanding is that this term is no longer used and people are just labeled within the spectrum. Kind of like a sliding 1-10 scale with 1 being mildly autistic and 10 being highly autistic.

High functioning autism is on the lower end of the scale. Which is where Dylan is on the spectrum. Dylan’s symptoms that my husband and I noticed early on were:

  • Noise Sensitivity- Would cover his ears or act scared to certain noises
  • Easily Frustrated- Happy as a clam one minute and angry the next for no apparent reason
  • Obsessive Behaviors- Loves very small unusual objects, has to take them everywhere and the world ends when we lose them! Obsessed with small clear pieces of things.
  • Unusual Behaviors- Always licking things and people, even at age 4 he still puts EVERYTHING in his mouth! Licks windows, tables, toilets (Yes I know…right?), shopping carriages ect.
  • Sleep Anxiety- Gets up at least 4 or more times a night, stays up way too late, very fidgety and restless
  • Clumsy- From the start of walking Dylan was very clumsy! Walked on his tip toes all the time, did not focus on where he was going… constantly had to hold his hand for his safety!
  • Eye Contact- Does not like to make eye contact when others are talking to him, or when he’s talking to people.
  • Clothing- Clothing must always be tag free and comfy comfy comfy!
  • Routine- His routine has to be consistent or his whole personality changes to very whiny, needy and angry.
  •  Personal Space- He has no control of respecting personal space. He likes to be all over people and in their face
  • Weird Noises– He sometimes looks like he’s losing self control and likes to be in your face making strange noises and sounds in a weird tone of voice.
  • Anxiety- Along with sleep anxiety, he easily gets overwhelmed around large groups of people or in large open places with noise.

There are more things I could list but these are the main things that we struggled with daily. When we mentioned these concerns to friends or family we got the same response from almost everyone. Most people would just think we were crazy and say “He sounds like a typical toddler!” This would drive me crazy! I never liked to do it but, I always found myself constantly comparing Dylan to other kids his age around us. I know that no 2 kids are every the same. But, watching the way he struggled at the park trying to climb and play with kids his age, or seeing how easily other parents seemed to have it, always wondering why what was fun for most kids was a stressful event for us!?

The older he was becoming the harder things were getting! I kept telling myself things would probably get easier as he became more independent but, really it’s just the opposite. He is extremely intelligent! He knew all his colors and his alphabet before he was even 2 years old. Of course I gave myself all the credit haha but, come to find out I believe that his autism plays a huge role in how smart he is!

My advice for any parent with a young child who you may think has a behavioral issue going on, is to watch them carefully if you think something may be off. I have learned that a lot of people think kids are being overly diagnosed with these types of disorders and they don’t believe it really exist! Be persistent with pediatricians if you have to be to get referrals for further testing. The sooner a young child is diagnosed the sooner they get the help and therapy they need! We’ve been told time and time again that the sooner it’s diagnosed and treatments begin the better! Younger children have a better success rate the sooner treatments begin. Here’s a list of some treatments we have been suggested:

  • ABA Therapy-Depending on your state and insurance this is an at home based therapy, where they come to your home to help with issues that come up during your daily routines. We unfortunately have been on a waiting list for 9 months now, so I do not have any personal experience on how great this is.
  • Occupational Therapy- This helps with a little bit of everything! Motor skills, strength, relationships ect. Dylan enjoys doing this very much!
  • Family Therapy– Finding a great therapist that works with children and families that are struggling with behavioral problems is huge. They work with the household to find solutions for you all to handle the stress of the situations that arise.
  • IEP ( Individual Education Program)- Our public school offers this at no charge. It works with children and their disabilities to help them work through the challenges.

No matter where on the spectrum a child is there are plenty of things we as parents can do to make sure they are heading in the right direction for success! It can be a frustrating process to deal with insurance companies and be on waiting list but it’s all worth the effort! I’m hoping to reach even just one person who maybe needs some advice from just another parent out there going through something similar.

#AutismAwareness

Discovering High Functioning Autism

This is my very first blog!

(Will be long and probably boring as I fill you in on the back story)

I am going to start off by telling you all just a tad bit about myself.. I know I’m already boring you! I’ll keep it brief I promise 🙂

My name is Jamie and I live in a small town in MA. I grew up here and, now just bought my first home here to raise my amazing son in! I am 31 years old. I have the most handsome husband named Nick, and together we have our son Dylan who is 4 years old. My husband and I met very unexpectedly at one of my former jobs. I was a hair stylist but, also worked at a tanning salon which, is where I met him! Love at first sight for sure! We both had some rocky, unstable relationships previous to each other.. but who hasn’t?? He moved in 2 weeks later and the rest is history! A few years later we ran off to Vegas with only a few close family members and got hitched!

Soon after getting married we decided we wanted a baby. It happened instantly and then before we knew it our bundle of joy (as most would call it) arrived! We had a healthy baby boy that was 7lbs 7oz and 19 1/2 inches long. He was beautiful. Now, the reason I said “a bundle of joy is what most would call it”, is because right from the start Dylan was not a happy baby! Cried constantly, didn’t like to be held much and was all together a fuss butt! Everyone thought he was just a colicky baby… Nick worked days and I worked part time at night and on weekends as a hair stylist. This is ideal for most families but, it didn’t take us long to get burnt out!

It put a strain on us emotionally to be home with an unhappy baby without our partners help! Dylan was easily frustrated by almost anything. Before long us as people and as parents were worn thin! Our marriage was getting rough and everything about being a young happily married couple with a new baby didn’t seem so happy. But, we stuck through it for each other. We both made career changes that helped the situation and we carried on. By the time Dylan had just turned 2, I began working a day job in an office so that I could be home at night and on weekends to help my husband with Dylan and we could co-parent.

Dylan began full time daycare. This was very hard for me to let him go during the day to strangers! So many thoughts went through my mind.. you know the obvious ones like: Will he be ok? Will he like it? and other questions like: Will they understand him?, Will they watch him and hold his hand so he doesn’t fall?. These are the types of things that started to make me think that Dylan was a bit off from kids his age. Other kids climb and run all over with no problem! But, Dylan was VERY clumsy. This was apparent when he got a spiral fracture in his left leg only 2 weeks after starting to walk! Some of our family members thought we smothered Dylan and didn’t just let him be a kid! We constantly hovered over him to make sure he was ok, not eating weird things or tripping over his own two feet.

In the last 2 1/2 years Dylan has attended 5 different preschools! I have not been happy with the last 3! But, the last one although I did not like the old bitty that ran it because she was just nasty to kids come to find out, was the only one who came to us and said there is something going on with Dylan and you should really have it looked into! What a sigh of strange relief!! Someone, even though she was not my favorite person.. someone else saw what we saw! I switched Dylan’s pediatrician and brought our concerns, along with his preschool teachers concerns to his doctor. She recommended some great places to have Dylan evaluated for further behavioral problems.

It was a bit time consuming doing paper work and trying to get appointments but, within a few months I was able to get him in! The evaluation process consisted of my husband and I first meeting with the psychologist with our concerns. Doing  a bunch of questioners that are 12345234524 pages long, and then Dylan went in for 2 visits that were each a few hours long, for some hands on testing with the psychologist. After this, we then waited for the psychologist to tally up her findings and have us back for the results.

The results were in! Dylan was diagnosed within the autism spectrum and showed signs of ADHD but at the time still under the age of 4 he was too young to appropriately diagnose him with the ADHD. I was secretly happy at the same time as being sad. Our suspicions that something was going on with him were being confirmed. It was a great thing for us because now we had a medical report to try and get him some help he could use to control his behavior.

It has been almost 9 months that we have been on a waiting list for ABA therapy which is a form of therapy where they come to your home and help you in your daily routines. Seems like a great thing but, with the high demand we will be waiting a long time. The other thing we did was get him involved with the public school system. He is now enrolled in their IEP classes (Individual Education Program) . We also switched his regular preschool to a preschool willing to accommodate his needs.

I know this initial blog was full of useless information to any of you that continued to read thus far! I do apologize for that. My next blogs will contain more information about our findings and things we do to help our son. My goal in starting this blog topic is for moms or dads out there like me, that may suspect something is going on with your child and it feels like no one understands you! Always follow your heart and your gut feelings. Get different opinions and don’t let people judge you! Thank You for reading this and I hope maybe you may just gain one thing from it!

Stay tuned for actually interesting blogs!
#autism #autismawareness