Light it Up Blue for Autism

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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.

Light it up Blue

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.

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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.

Waiting for his bus to special ed preschool

Waiting for his bus to special ed preschool

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.

Kids and dog

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.

Brayden

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!

 
 





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Comments

  1. courtney says:

    Great article! My son suffers from Sensory processing disorder and Oppositional defiant disorder. Both are supposedly forms of autism. Right now we take him to therapy sessions that seem to be working out since I don’t want him to use medication.

    • Courtney,

      I’m sorry for the late reply. Our daughter, youngest son, and I have Sensory Processing Disorder. Although, many children on the Autism have sensory concerns not everybody with Sensory Processing Disorder are on the Autism spectrum. All (including ODD) are very closely related and have similar characteristics. All 3 of our kids are in therapy and are doing great! If you ever need someone to talk to just let me know!

  2. Darlene Jones-Nelson says:

    A great article. I now have a craft I can do and hand out For Autism and maybe able to sell them and donate the money. I have ton’s of puzzles I lost pieces for. I could paint them blue, put a pin on the back.

  3. Faith Bosnick says:

    Great article!!! Awesome ideas for crafts!!

  4. A moving story. Good luck with your son, I can tell his parents love him very much.

  5. thanks for sharing and God bless you and family.

  6. Great post, thanks for sharing!

  7. Melissa Dunn says:

    Thanks for sharing I have a nephew that’s on the spectrum and I know how challenging it can be. It takes great strength and dedication n tons of patience to be a parent or even care taker of a child with autism.

  8. My oldest is 14 and a couple of years ago he was finally diagnosed with Asperger’s Syndrome. He also was diagnosed with Bipolar, ADHD, and ODD. We still struggle on a daily basis with it. Everyone on the outside looking in doesn’t see the diagnosis as he is very high-functioning. Even several doctors. It took one that really got to know him and listen to me before we finally got what I needed. The diagnosis. For him its just a word. To the school it doesn’t matter as they don’t provide services for him. But as a parent, it helped knowing I wasn’t going crazy. lol
    My middle daughter was more like your son. She started out as seriously shy and needed speech therapy. No problem. School did an evaluation after I had her evaluated privately. She had been seeing a speech therapist for about a year before the school would evaluate her. Then this year she started having social problems. Not being able to make friends, always feeling down or unwelcome at school. She started acting like my son. Then the headaches. Can’t stand sounds. Hated being around groups of people but really wanted to be around her friends. Had all kind of testing. I finally pulled her out of school to homeschool her. Then I pushed and pushed to get her tested and evaluated. Now we are going through that process with her. They confirm a sensory issue and are sending us to an OT for therapy.
    Sorry to ramble on. Its not often I get to read an article about high-functioning autism. The center we go to seems to feel like if you are high-functioning you don’t need services. 🙁
    Anyway, you have a new reader. 🙂
    Jeanette G. recently posted…Being frugal.. thoughts and ramblingMy Profile

    • Oh how I can relate! Our daughter and our youngest son both have Sensory Processing Disorder, so although they are not on the Autism spectrum, they have sensory struggles, and our youngest son’s in particular are major. We had to fight to get them into OT, though, because the diagnosis of SPD alone isn’t “enough.” It was because they both also have some gross motor and fine motor skill concerns that they qualified. Actually, that’s the same for our oldest as well even though he IS on the Autism Spectrum. Because he’s high functioning, they almost refused services, too, except his gross motor delays are pretty severe. It can be frustrating.

      Please feel free to ramble anytime! We need a place where we can chat with others – particularly those that understand. It’s nice to meet another homeschooler on the same journey as well! 🙂 I hope the center you go to changes their mind. So frustrating!
      Emilee recently posted…Curiosity Quest ReviewMy Profile

  9. I have worked with and loved many children with many different types of needs. I just feel we all are what God planned for us to be. God bless you and your family. Your children are absolutely beautiful.

  10. Thanks for sharing. Early id is the key. I work as an SLP and we see real changes in many children with ASD abilities to communicate which is great for the families!

    • Absolutely! Thanks for sharing your input! I have noticed with our youngest (who has SPD) that he progressed so quickly because we got him help right away. It really makes a difference!
      Emilee recently posted…Weekly Wrap-UpMy Profile

  11. Thank you for your article. I have a niece that has finally been diagnosed with high functioning Autism. It has changed the whole family’s life, but I think the moms’ life changes the most. It is helpful to have the diagnosis, but that’s where the work comes in…all of the educating so that you know how to best handle your son or daughter’s condition.

  12. WOW, Emily, while reading your information and discussion on Braydon, I was thrown back into the world of my daughter and my grandson, Nolan! Nolan talks ok, but the tantrums and the hitting and screaming are all the same! I was on Skype with Both of my Grandchildren on Thursday night and he was talking to me and was constantly on the move. He got mad because my grand daughter, Scarlett, walked in front of him and he hauled off and hit her! Amanda doesn’t help the situation too much because I already heard her call him a weirdo, an idiot and words like that. I’ve seen him have his tantrums where he’s screaming about something and then he’ll hit his head on the wall, the floor, the door, with his hands, anything he can! He’s had indents and bruising on his forehead already! I was reading this and my husband walked up to me and told me to wake up. He said, you look like you are sleeping. I told him NO, I’m Reading! I just can’t get over how much of what you said is exactly like how Nolan acts. Ever since they’ve moved from Fort Knox to Fort Campbell, he’s been a bit worse! He’s lost so much weight because he just doesn’t want to eat! I was happy to hear that he was still eligible to go to pre-school, however, he only goes a couple times a week now whereas at Fort Knox he was going every day in the week. I remember that one of my daughter’s best friends at Fort Knox had a son around Nolan’s age and Nolan always got bad whenever Gage was around. He wouldn’t let him play with his toys, he’d hit him, and totally freak! So far, Thank The Good Lord, We haven’t seen any of the same things out of Scarlett that we had in Nolan at her age. Thanks so very much for sharing your family with us and the trials you go through each and every day! Believe me, Amanda (my daughter) has to deal with it as well! Thanks again. Michele 🙂
    Michele Ash recently posted…Family Christian Giveaway (ends 11/6)My Profile

  13. I have a son aged 17, almost 18 with Autism. He opted to stay in school until he is 21 but I suppose we will have to start planning for his future if he decides to leave home. That is a huge step.
    Sandra Watts recently posted…25$ Build A Bear Gift Card GiveawayMy Profile

  14. Now I remember, I had forgotten about the kids throwing things all the time.

  15. Lisa Coomer Queen
    Twitter:
    says:

    I have a grandson who it autistic. I know the daily struggles. Great Article.

  16. Emily Endrizzi
    Twitter:
    says:

    My 16 year old son is also on the autism spectrum. He is considered high-functioning. I actually think he is becoming more “autistic” as he gets older, in some ways. It is a struggle.

  17. Elizabeth H.
    Twitter:
    says:

    I love learning about autism. I am teaching piano to a little 4 year old boy who has Autism. It’s certainly a challenge, but he loves music, especially the keyboard! He’s also picking up a few things at each lesson. Any advice you can give on more ways I can teach him would be great! He’s also non-verbal.

    • That is great! My friend’s son is non-verbal and absolutely LOVES music. Because of this, though, if someone or something is “off key” he recognizes it and gets very upset. If you have some instruments that can be held in his hands like a tambourine or maracas it could give him some independence while working on fine motor skills (holding the instruments) and gross motor skills (using arms) as well as teach beat. I hope that helps!
      Emilee recently posted…Give the Gift of Essential Oils GiveawayMy Profile

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