Voices of Autism: ‘I Mourned for My Hopes and Dreams’

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Jennifer Bush, mother of Wesley, a.k.a. Moe, 4, and author of the blog Anybody Want A Peanut?:

My son’s development seemed perfectly normal. He was independent, curious, and happy. At 18 months, Moe had just started walking and wasn’t talking much. He had a few signs and words he would use regularly, like banana and baby, but was inconsistent with many others. Gradually, Moe stopped speaking entirely. He didn’t point or respond to his name. We took Moe to the pediatrician just before his second birthday.

Around the same time, Moe’s strengths started to feel like odd behaviors. Moe could occupy himself for long periods of time, reading books or playing with cars. I thought I was lucky. But as Moe got older, his differences became clearer. When other kids were chasing each other or playing side by side, Moe would do his own thing. He was oblivious to their games, and would wander around the house or play by himself.

Still, we thought maybe Moe just had an introverted personality. For such little guys, it is hard to know the line between temperament and problematic behavior. If it weren’t for Moe’s speech delay, we wouldn’t have been too concerned. Autism was in the back of our minds, but we didn’t really believe that would be the diagnosis.

In fact, when Moe was first evaluated through the regional center, he was not given an autism diagnosis. I now realize that they are quite stingy with that diagnosis, lest they are forced to provide more than the minimum services. We had to pursue a private diagnosis and then go back to the Regional Center to request appropriate services. Those services included 25 hours per week of in-home behavior, speech, and occupational therapy.

My daughter was born just weeks before Moe’s therapy began. Those were some of the darkest days I’ve experienced. I mourned for my hopes and dreams for my family. I felt robbed of the chance to enjoy my newborn girl, as I sat watching hours of therapy, terrified of what would become of Moe and all that his diagnosis would mean for her. I couldn’t even imagine what would happen if she, too, were to be on the spectrum.

Moe is now going on 4, almost two years post-diagnosis. He is in our school district’s special day preschool. He is no longer bordering on the edges of autism, but firmly in its grasp: non-verbal, a sensory-seeker with multiple motor delays. He is also adorable, fun, mischievous, and affectionate. My daughter is a typically developing 2-year-old who may prove to be Moe’s greatest teacher.

I’m grateful to have had the chance to meet and interact with amazing people in the autism community: therapists, teachers, and fellow bloggers. This year we will also walk for the first time in the Bay Area’s Walk Now for Autism Speaks, and join the thousands of others in raising funds and our voices for Autism awareness.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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  1. by Ilene

    On April 14, 2011 at 9:58 am

    In so many ways I’m reading my own story. Seeing some things that aren’t typical when kids are around 2 and seeking answers. Expecting the diagnosis, but only in the back of my mind. 2 years later dealing with special-needs preschool, seeing the potential and praying that it comes to pass. Seeing the signs of a typical 4 year old tucked in between all the autism moments.

    I wish you all the best!!!!! May we both (and all others) have the successes we dream about!!!!!!

  2. by Michelle

    On April 14, 2011 at 8:37 pm

    I, too, felt that I was reading about my own son. He will soon turn 3 and he is now in a preschool for autistic children. Although he is low on the spectrum, according to his doctors, we are still doing anything we can for him. Every day is a struggle. I feel robbed sometimes of my time alone with him during his toddler years. Instead he spends 4 hrs a day at school and then we start getting ready for the next day once we get back home. It’s been a difficult adaptation for me, but I’m getting there. Wishing you the best in your journey! Although none of this was expected, I love my son more than anything in the world and will never leave his side through this amazing journey. :)

  3. by Rebecca

    On April 14, 2011 at 9:14 pm

    Thank you for your story! I also feel as though I had lost so much. I didn’t get to enjoy so much of my son’s childhood as we were always wondering what was wrong with him. I wish I had appreciated more of him for who he is rather than what he should have been. He is now 7 and we didn’t get any diagnosis until this year. It has been a long journey! He is such a sweet loving little guy that now I can’t imagine our life any other way. Thanks again for your story!

  4. by Barbara Manatee

    On April 14, 2011 at 9:31 pm

    Thank you for sharing your story. As a teacher, I hate hearing parents say they had to fight to get the assistance and intervention their child needs. I’m glad you were able to get the help he needs and that your daughter is doing well.

    I’m dedicating my blog all month long to Autism Awareness.
    http://www.barbaramanatee.blogspot.com

  5. by Lynn

    On April 14, 2011 at 11:28 pm

    I know so many people who were just getting their diagnosis as they were about to have or after they’d just had another baby. I can only imagine how dark those days were. The good news…it’s behind you and if you survived that you can survive anything!

  6. by Alysia

    On April 15, 2011 at 10:37 am

    Jen – I can so relate to this. We started early intervention the week I found out I was pregnant with our third, and our son was officially diagnosed when the baby was 5 months old. I know that feeling of loss of hopes and dreams…
    But like you, I’m seeing the upside. You so beautifully wrote how your daughter might be Moe’s best teacher. I’m finding that here as well.
    I’m glad I found your blog early on and I’m so happy you shared your story here too.

  7. by Dani G

    On April 15, 2011 at 4:26 pm

    I understand that mourning period. It’s a long process. It’s kept me from allowing myself the gift of another child. So many people say they’re grateful they’d already been pregnant or already had the second child when their first was diagnosed. It’s a very, very difficult spot to be in.

  8. by Spectrummy Mummy

    On April 15, 2011 at 5:20 pm

    My youngest was 6 months old when Pudding was diagnosed at almost 3. I’m pretty sure I wouldn’t have tried for another, so I’m glad that decision was taken from us. :-)

    Thank you for sharing your story, we are never alone in this.

  9. by Cheryl D.

    On April 15, 2011 at 8:12 pm

    What adorable kids! Thanks so much for sharing Moe’s story. I’ve always loved your writing, and it’s such a treat to see you published here!

  10. by Big Daddy

    On April 16, 2011 at 1:39 am

    My wife was pregnant with my daughter when we got my son’s official diagnosis. There were a few anxious moments here and there, but in the end, we got two beautiful kids. One on the spectrum and one not.

  11. by Kerry

    On April 16, 2011 at 8:54 am

    So proud of you! You are an inspiration to all of us. You write with such truth and candor — it truly makes my day and like i’ve always said, solidifies the fact that we are in the BEST company. thank you!

  12. by cindy

    On April 19, 2011 at 12:34 pm

    Having a child with autism is no reason to mourn. This is not cancer, your child will survive. Every child has challenges and every child has gifts. The sad part is how much effort goes into getting the tools that will help your child succeed.
    My grand daughter has autism. She doesn’t enjoy some of the things other kids enjoy. She does enjoy life and brings joy to my life every day.
    All parents can do is what we do for all our children, give them tools to be successful in the life they choose. It may not be “normal” but what is.

  13. by Carol

    On May 31, 2011 at 9:26 pm

    Grieve, and then get on with the challenge of healing and overcoming it. Autism One conference explains what happened, and what can be done. Our son, too, started just like this. We did sensorylearning.com at 3, AIT at 4 and 9 months, the GFCFSF diet, fish oil, found a DAN doctor (soon to be reclassifed as InCEPT) and he is now VERBAL, and fully mainstreamed in first grade. It CAN be done! Hang in there! Stop listening to the traditional doctors and go find the answers that are there.
    You can help your child overcome and recover- maybe not completely, but enough so that your children can more fully enjoy life and you can help them!

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