Autism Awareness Month

Today, I want to talk about a disability condition that is affecting many individuals and their families…. autism.  April is Autism Awareness Month, so I wanted to share just a bit of insight into this disorder from a mother of a handsome young man who is also autistic.

Joseph is Joe and I’s youngest child, and we knew something wasn’t quite typical from a very early age when his speech and language were delayed.  At age 2, he started receiving speech therapy, and later started to a special education preschool program for communicative handicapped before being mainstreamed to a neighborhood school.

His early school years were interesting.  I remember the time he was left alone on the kindergarten playground, then broke his wrist when he fell off the slide.  Or teacher reports of his spending time watching the water splash over his hands or being in his own world. It was clear he needed the extra assistance of an aide at school- which we advocated for and received.

Middle and early high school years were very difficult for both Joseph and the family. Because he couldn’t quite communicate, he began to act out in frustration.  The low point for us was his school program.  He didn’t fit in a special day class because he was very bright; but a typical classroom, even with an aide, also didn’t work.  The school district talked us into this one program, which turned out to have untrained staff who would literally lock him in a small room and restrain him for little cause. When we discovered this, we removed him and filed a complaint, but the psychological trauma to Joseph took years to heal.

Eventually, the lack of local services lead to our hiring an educational consultant and finding a gold standard program in another state for Joseph’s high school years.  This program taught Joseph to communicate his feelings and taught him lots of social skill and academics.  Plus, for the first time, he had friends and got to play sports such as lacrosse and soccer.

This school program was a godsend for our family, but there were little glitches, like the time he got lost in Chicago O’Hare airport for several days on a routine flight home from school.  Several police agencies were involved in the search, as well as the airline which lost him.  On Day 3, he was located sleeping in the terminal, a very hungry young man.  The airline put him on the very next flight, first class, and also fed him.  After this adventure, we always made sure Joseph carried with him our contact info, calling card, and money instead of placing it in his checked luggage.

Joseph & Grandma at Graduation

Joseph & Grandma at Graduation

Graduation was a special event for our family.  Joe and I burst with pride as we watched him stand and present the senior class gift in front of the packed event.  He was so handsome wearing his cap and gown, and the idea he would be speaking in public confidently was a dream realized.

Transition to adulthood was the next challenge.  In a rural county with no services, we tried to fill the gap the best we could.  When his skills started regressing, I knew we needed to do something more proactive.    I did my research and located a wonderful program in Northern CA Bay Area only 2 hours away, where he has lived for the last year.

Joseph now resides in his own apartment, with staff to check on him as needed.  All of his needs are met next door at the large building- skill classes, recreation, medical, medication, etc.  Best of all, he has friends once again, and even met a special young woman- who he has been dating for almost a year now.  I had always hoped he would find someone to love and return the feeling.  Another dream realized.

Obviously, this is the short version of our journey raising an autistic young man to adulthood.  There were many trials and tears along the way; including grieving the loss of the dream all parents have when they bring the newborn home from the hospital.  While our journey was different, it was rich nonetheless.  Joseph is a delightful, sensitive young man, and I am richer for having the pleasure to raise him.

No one knows why autism happens, though current scientific studies are leaning towards a genetic base with possibly an environmental trigger.  It cannot be “cured,” as one Hollywood mother likes to say in the media.  If caught early enough and provided intensive services, the child can show an improvement in symptoms, but that is all.  We learned that improvement can happen, even at an older age, with the right methodology approach.  But the autism is still there.

Having parented an autistic child for about 2 and 1/2 decades, I have seen many  so-called “treatments” come and go.  I have also noticed a strong need for parents to “fix” the child, particularly in the first few years after diagnosis.  Eventually, Joe and I finally reached a place of acceptance for what was…. the diagnosis, the reality he would need life long care and assistance, the realization that we love our son, no matter what.

If you happen to have a loved one with autism, or know of a family with a child with autism, please reach out to them with non-judgmental love and acceptance.  Do a small random act of kindness for the mother, who typically is the caretaker.  The best thing I needed during the early years was just a few hours of rest or fun diversion.  Laughter is the best restorative medicine I know.

My friend, Lori, was always there to listen to me when I needed her.  I have been so thankful for her friendship and non-judgmental acceptance and understanding over the last 20+ years.  If you know a parent of a child with autism, consider being such a friend to them and lend an ear to listen.

I know this post is pretty long, but I wanted to share some of my thoughts about autism.  Please consider leaving a comment if my post touches your heart or you can relate to this topic.  Regards, Carla

22 thoughts on “Autism Awareness Month

  1. Hi Carla, I subscribe to your blog, so I follow your adventures. I wanted to comment on this post. I have an adopted nephew who’s autistic; when I showed some understanding to my brother and SIL I was surprised by their grateful reaction, but your post explains how alone they must be feeling. I will continue reaching out to them as much as I can. Thank you for sharing. This has helped!


  2. Joseph was so lucky that he was born to parents with so much love to share. This made me cry. Any parent who has a child with any disability grieves for what might have been and acceptance is something that comes slowly.

  3. I know you must be so proud of your son. He sounds like a bright young man. I’m happy that autism is getting more “press” these days. Many of us are not aware of the challenges autistic people face and through awareness perhaps we can lessen those challenges. Thanks for sharing.

  4. Thank you for sharing your family and Joseph’s touching story. It brought me to tears.

    I have several friends who’s young children are on the spectrum, and it’s nice to read a positive story about an adult.

    Much love to your family!

  5. I can not begin to imagine this journey you have been on. It sounds like your son has done well. That is so wonderful and it is so thoughtful for you to share this with others. It really puts things in perspective.

  6. Carla,
    Thanks for sharing your story. I have a good friend who’s grandson was diagnosed early, and was also able to attend a special school which has helped so much. I’m so glad you’re speaking out, as autism seems to be coming to our attention more and more. Not an easy time raising a child with this but he sounds like a lucky young man to have parents who supported and found the best sources for his education. There needs to be more resources available. And being proactive is obviously the best for children with autism and their parents, too.

    Thanks. You’re making a difference.

  7. Thanks for sharing your story. I work at a school for special ed children in Illinois – with special classrooms for children with autism. I’m so glad that your son has done so well and that he was blessed with such great parents.

  8. LOST for a few DAYS in Chicago airport????
    How is that possible???

    I cannot imagine what every last one of you went through on that. OMG.

    I’m trying not to SHOUT too much, but I cannot imagine.

    Glad he’s happy. Good place to be.

  9. Thanks in part to YOU, my friend, I do give a little bit more of myself to the parent of an autistic step child. I call it the 2 strike whammie. Its difficult, and I will always be a soft place for that mommy to land.
    love yer guts:) G

  10. Thanks for your post. I’m a middle school teacher, and I’ve always wondered what happens after high school. Now I have one story. Thanks so much for sharing:-)

  11. Carla, as a former teacher/principal, I met many families of children with autism in its various forms. Your story is touching, and goes to show that with love, acceptance and endurance these wonderful children can grow up to lead good lives. It breaks my heart to see families who have an autistic child but won’t accept that fact. They are doing their children such a disservice. Acceptance doesn’t mean you ignore the problem. Acceptance means you recognize the problem and move forward to find the best possible guidance and help you can find for your child. Hugs!

    • Caron, I have certainly seen what you mentioned. I have seen where both parents were in denial; and also where one parent was an advocate and the other spouse was in denial.

      Every parent hopefully moves through the stages to acceptance, however some may never start the process or get stuck along the way. It also depends on the severity of the autistic presentation as how long the denial may or may not last. One possible reason for the denial is the strong desire to not believe there is anything wrong with your child.

      Thus said, it is very frustrating for educators when a parent remains in denial and/or responds in anger. It also is not helpful for the child- who needs the parent to advocate for them to get the services they need.

      Thanks for your well thought out comment! Carla

  12. Thank you for sharing your story. Our niece with autism will graduate from high school in May and we will travel the 1400 miles to be there. Her parents have done everything they can to give her the support she needs and sometimes it’s been a lonely road. I’m so glad your son has grown to be a happy adult!

  13. Our youngest was diagnosed with bipolar just as he started college. During our massive learning curve, I came to understand how many of his symptoms also fit the patterns of autism (especially after reading Born On A Blue Day).

    My heart goes out to you for the journey you’ve made as a family and for the years that lie ahead. As fellow travelers, we each need to be less judgmental . . . we can never know what the next person is coping with.

  14. Thanks for your story! My tears still dropps…!

    I’m from Norway and we lives about 40 kilometers from Oslo. Here in Norway we have celebrated the Autisme Day April 2nd, and I think it’s great that you in USA markes the whole month.

    Yesterday I leaved the board in the Norwegian association for Autisme (Autismeforeningen i Norge) after two years and before that I was a leader for a lokal part of the same association i 4 years. I’ve met a lot of parents to people with autisme, but your story and the content of acceptance, love, the focus on finding the possibilities and so on, touched me a lot!

    My oldest son do also have autisme. I fighted for a diagnosis from he was 2,5 year until he got the diagnose Asperger syndrome while he was 11,5. Now he’ll soon be 20. Maybe an highfunctional autisme (HA) would be more precise, but he accepts his diagnose….

    I have been alone-mother with both my sons since their father pasted away when they were 1 and 5 year. My yongest son do have diabetes 1, and I’ve a lot of “work”… LOL My sons challenges have give me a lot of sense of humor, a respect for each individual and a humility in meeting with other people that are different. In an age of 41 years, I started at a bachelor degree in social welfare, and I’m finishes in these days.. Next is a masterdegree….

    My sons lives still with me, but soon my oldest son with Asperge syndrom are moving to his own flat. He is working in a supermarked and doing fine. I’m very happy there is possibilities also for people with Autisme to get a life!

    Once again, thanks for your story! It’s seems like we have more in common than the quilting :o)

    Have a nice month!


    (I have linked your blogg to mine, so I get noticed everytimes you write something )

    • Hi Anne, Congrats that your son is able to work and get an apartment. You learn to appreciate and celebrate the achievements, no matter how small. How wonderful that you are your son’s advocate, too, and your work on behalf of children with autism in your beautiful country!

      The best advice I have for moms who care for children with unique needs is to also take care of yourself. You deserve to pamper yourself and do nice things also for yourself. 🙂

      I will also add you to my link, too. Thank you for your comment! Regards, Carla

  15. What a joy you are, Carla, to put a face on this disorder. I believe that awareness is the first step to conquering disease. I remember meeting Joseph and thought that he was just another couch potato, very similar to my boys (well young men). Joseph’s successes now are a testament to your courage. Your struggles and work have undoubtedly touched many lives.

  16. Carla,
    I was so touched by your honest and well thought out and extremely well written blog post letting us know how autism has touched you and your family. My nephew is autistic and like you we knew something was not quite right at an early age but because he is very highly functioning it took a while for him to be diagnosed. His mother is a lot like you, very special and patient. he could not be raised better by anyone. I loved reading about your son Joseph and am so glad that you have brought a little more awareness about autism to the general public. I always enjoy reading your blog and admire your amazing talent but now I also admire your kind and loving spirit. Thank you. I look forward to meeting you at your class at MQS it will be my complete pleasure to be your student.

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