Wednesday, November 7, 2012

A Parent's Perspective - Reinventing Mommy

Today I'd like to welcome Jeanie of Reinventing Mommy! Jeanie is mom to 3 1/2 year old Jack, who has autism, sensory processing disorder, hypotonia, dyspraxia, dysphagia, and expressive/receptive language disorder. Jeanie writes about her experiences of raising a child with autism on her blog with complete honesty, as well as optimism, like in this post. Thank you, Jeanie for stopping by to share your perspective today!

Our Life in Five Words:

Hectic. Full. Hopeful. Unique. Exceptional.

Four Qualities I Look For in a Therapist:

  1. Open-mindedness.  I look for therapists who are willing to look at all possibilities for my child’s care.  Especially with our special needs children, we need to look outside of the box and examine all ideas.  In addition, I appreciate it when a therapist is open to listening to ideas from us as parents, because while they might be experts in their given field, I am an expert on my child.  I also look for therapists who will help us carry-over therapy concepts into our everyday lives while still understanding that not every moment can be therapeutic – that my boy needs downtime, too!
  2. Accessibility.  Issues don’t arise only on weekdays; my son went on a liquid strike a year ago over a weekend during the month of July – it was a crisis that needed after-hours attention!  I appreciate therapists who will answer emails and show genuine concern for our family and a particular situation we face outside of the 1-2 hours a week they see my boy.
  3. Compassion.  Instead of labeling my child as having behavioral issues, I look for therapists who are willing to truly evaluate each situation, see what is setting my child off, and compassionately look for a workable solution.  Forcing my child to do something that is so counter to his sensory needs will not serve to reinforce learning, so I look for therapists who will take his lead and gently help him learn, grow, and overcome his challenges.
  4. Expertise.  I not only look for therapists who specialize in my son’s diagnoses and treatments that could benefit him – like sensory integration – but I also look for therapists who know the system beyond their clinic.  I look for therapists who can provide some insight into special education, school-based therapy and carry-over into the school setting.  Even beyond that, I believe it is important to find therapists who know how to work with your insurance and public programs – like Medicaid waiver programs - to get your child the services he/she needs.

Three Resources I Can’t Live Without:

1.  An Army of Moms (or Dads!).  I’ve found that the greatest resources come from the mouths of other parents.  I highly recommend finding a local support group so that you can speak to other parents about the resources available in your area.  If you can’t find a local support group, look for online support groups, but try to find a parent or two on there from your area.

2.  Books.  It was so hard to pick just one, so here are a few of my favorites:
  • Engaging Autism by Stanley Greenspan – a great DIR/Floortime resource
  • Carly’s Voice by Arthur and Carly Fleischmann – inspirational and real and will show you that our kids can do anything!
  • TheOut-of-Sync Child and The Out-of-Sync Child Has Fun by Carol Stock Kranowitz – the best books I’ve found on Sensory Processing Disorder and wonderful resources to help you understand and develop activities for your child with SPD or sensory challenges
3.  Jack’s iPad.  The iPad has served so many uses in our house.  It’s a valuable learning tool that can reach my boy when people sometimes can’t.  It’s so versatile, with a picture scheduler, visual timer, and choice board applications to give his world structure and choice in a way he can understand (visually) and through a medium he can use when he doesn’t have the words to express himself.  The touch screen technology of the iPad has truly opened up a world of possibilities for so many children on the autism spectrum and we couldn’t live without one.

Two Words (or More!) of Advice for Therapists Working With Children with Autism:

I think it is easy for therapists, educators, and even parents to forget that our autistic children are just that – children.  They are children who process and understand the world in a different way from the rest of us.  Instead of looking at children with autism as having “behavioral issues”, look at what is triggering that behavior.  Perhaps the child is fatigued due to low muscle tone.  Perhaps there is a sensory trigger in the child’s environment – one that you can’t easily identify – that is causing a child to express through behavior what they cannot in words.  

Please realize that my child isn’t trying to be difficult; he simply lacks the expressive and receptive language skills to communicate well with you, his body doesn’t move and he can’t motor plan as we do, and his little body and brain process the world in a way that is counter to the way we experience it.  He is working so incredibly hard each and every day for you and doing the absolute best that he can, and he has a mama who is so incredibly proud of him for doing just that.

Remember, too, that the child you work with every day is not just a patient; he or she is the heart and soul of a parent.  That child is seen as perfect – despite any and all evaluations or diagnoses – to those people who love him or her.  As a parent, I love my sweet boy for exactly who he is – challenges, deficits, and diagnoses included.  Treat that heart as precious, for it is to someone in your waiting room.

A Word of Advice for the Parents of a Child Newly Diagnosed with Autism:

There are no words that can truly wash away the shock, pain, and the myriad of emotions you feel after hearing those words “Your child has autism”.  Many of our kids receive additional diagnoses in addition to autism.  The world in this very moment may seem overwhelming to you.

I can tell you, looking back to that day over a year and a half ago when we received our son’s autism diagnosis, it does get better.  Take it one step at a time.  Autism is a life-long disability, so there is no rush.  It’s not a sprint; it’s a marathon.  If all that you can do that first week is just process what has happened, that is okay.  Make a list and just do one thing at a time; it’s okay if it’s only one phone call every few days.  Give yourself plenty of time to take care of you and your family.

Know this – you will find strength you never knew you had.  You will find your voice as you stand to advocate for your child.  Your confidence will grow and you will come to see yourself as an expert in your child.  You will learn that if something seems wrong for your child and your family, it probably is.  You will trust yourself.  You will feel pride in each milestone and you will feel proud that you were a part of making that happen.  You will find beauty in the world, like in the way that your child finds peace on a swing, that you would have never appreciated before.

Most of all, remember that the child you brought home from that evaluation is the same child that came with you to be evaluated.  Nothing changes with a diagnosis.  Only understanding and knowledge is gained.  Your child – your beautiful child – remains, as does your boundless love for that precious part of your soul.

One Dream for My Child:

I wish – more than anything – for my child to live a life in which he feels happy, fulfilled, and in which he is appreciated and accepted for his differences.  I want him to find a purpose that gives him satisfaction and makes his life rich and full of joy.  I’m just blessed to be a part of his journey and I will be here to support him in any way he needs me as his days increase.  If he is satisfied with his life and happy in the future, then I will feel like my dream for him has come true.  

What I Do to Rest and Recharge:

Several things – I love to run.  I run about 3 miles daily (more when I’m training for a specific race/distance) and it provides me the time to just center my thoughts and prepare myself for my day.  I also love to give back to the community.  I’m involved with several autism/special needs support groups and organizations, and I feel better knowing that I am helping someone else.  When I really need to just unwind and relax, I enjoy a good book, a chilled glass of Reisling, and  - when I really need to indulge - a pint of Ben and Jerry’s Chocolate Fudge Brownie, because sometimes there’s no better therapy than chocolate therapy!

Thanks so much for stopping by, Jeanie! Readers, please visit Jeanie's blog at You can also find Jeanie as a regular contributor to Hopeful Parents and SPD Blogger Network. Jeanie has also been featured on The Oxygen Mask Project. You can keep up with Jeanie and Jack on Facebook or Twitter @ReinventMommy.

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