When Autism is Part of Your World December 28, 2016

As the Real Moms of Eastern Iowa blog comes to a close, it seems to fall into a season of farewells for us.  It’s apt that our years of therapy at UnityPoint’s Witwer Children’s Therapy are also winding down.  

I had every intention of making this my final blog post, but realized it would be nearly unintelligible by tying so many loose ends together.  My blog posts are more often about Ellie and the challenges, victories and experiences with her Autism diagnosis.  Many of you have shared these experiences with us through this blog so I’d like to update you on her progress and what’s ahead for her.  By sharing our experiences, my hope has been to bring a bit of understanding to others who aren’t around special-needs kids, particularly those on the Autism Spectrum.  This is also an opportunity to mention the resources we’ve utilized the past several years.  If you know a family who is grappling with a new diagnosis (latest statistics show 1 in 68 children are identified with Autism Spectrum Disorder), or perhaps they have concerns about their child’s development, please suggest the resources I mention throughout.

My involvement with the Real Moms blog began when one of Ellie’s therapists at Witwer Children’s Therapy mentioned that UnityPoint was looking for bloggers.  I thought with our Autism experience and with me being an older Mom, we might contribute a different perspective.  Miss Stephanie, our occupational therapist, has since moved on with her career and family, but like so many of the therapists Ellie has been blessed to work with, she’s much more than just someone we saw once a week.  The care, concern and involvement our occupational therapists and speech pathologist have for Ellie has been profound.  

As I write this, I know Ellie’s last speech therapy session will be this this week.  Of course if she needs to resume therapy in the future she can come back.  This is, however, the first time since she turned three that we’ve decided she’s on solid ground, is testing within the range of her peers and has met her goals. 

Just a few weeks ago, we had her final Occupational Therapy appointment as well.  We’re beyond thrilled at the progress Ellie has made.   Knowing there is a waiting list for kids to get into therapy at Witwer, the time has come for Ellie to “graduate,” to make room for other children to have access to her fabulous therapists.  The affection I have for our Witwer therapists is like family; it’s a family we will greatly miss.

Four years ago, had I been asked how I thought Ellie would be on her 7th birthday I wouldn’t have known how to respond.  Christmas break four years ago was very different - I was getting ready to send 3-year-old Ellie to preschool for the first time when school commenced in January.  And I was struggling mightily with it – worried, scared, and anxious.  She had been receiving at-home therapy through the Grant Wood AEA Early Access program. If I had to answer how I thought she’d be at 7, I’d simply have been hopeful that she would be in an inclusive classroom, that she would have friends, and that she would be able to converse with her classmates.  She has blossomed and surpassed my hopes!  With an Autism Spectrum Disorder diagnosis, there’s no way to know what the future holds though.  Therapies help.  Friends help.  Communities such as this blog help.  

Ellie is in our neighborhood school, and I think it’s safe to say she’s flourishing there.  She’s in a regular classroom, and she has classmates she considers friends though she still often prefers to play alone.  Her ability to speak and interact with us is much more natural and conversational.  Overall, she’s a bright little girl with a funny, quirky disposition.  There are still struggles and we know that she’ll continue to work on those things that are hardest for her.  Along with Witwer, the other amazing resource we have is The Homestead in Hiawatha.  Ellie has received therapy there for approximately a year and a half, and it has been a game-changer for her.  She attends therapy each weekday; we feel the consistency and frequency of her therapy there has been critical to her progress.  Among other things, The Homestead has helped Ellie with her social skills tremendously. 

All of these therapies have helped Ellie to become the girl she is now.  I’m happy and excited for her and what the future holds.  As things become more difficult at school we’ll figure out how to deal with them and she’ll continue to find her way. Thankfully we live in an area with so many fantastic resources. I’ve learned so much about parenting, about patience, and about compassion through our Autism journey. 

It’s a humbling and shameful revelation when I consider how ignorant I was previously. There have been times when I’ve thanked God for the insight I now have, for helping me see what is truly important in this life.  But at those times I would be lying if I wished that it wasn’t upon Ellie’s back that I learned.  

My Autism up-side

1) A concentrated focus on what’s important for my kids.  (Speech and Occupational Therapies, ABA therapy – those things that help Ellie function better in life).  Chloe is in other programs outside of school, but they’re limited due to scheduling around Ellie’s therapies.   She doesn’t get to participate in a lot of sports or other extracurricular activities, but she understands.  We’re like a team – we all give and take to help each other be our best.

2) Humility.  Autism, you teach humility in so many ways.  From the embarrassing meltdowns in public to our healthcare insurance that helps to cover Ellie’s much-needed therapies.  The meltdowns speak for themselves, but the gratitude and appreciation I have for our healthcare is immense.  If we didn’t have it, I am certain Ellie’s progress would be very different.  When you have neuro-typical kids your healthcare may not be something you give much thought to.  But when you have a child on the spectrum, your outlook is very different indeed.  The cost of therapy is staggering; it would be impossible (unless we won the lottery) to pay for it out-of-pocket.  I am aware of how blessed we are and how therapy will help Ellie to lead a full, productive and satisfying life.

3) The amazing people you will meet.  You’ll meet parents and professionals who will help you navigate the world of all things Autism.  Talk to other parents about what they’re doing; most all parents are very open and willing to share their experiences – what worked for them and what didn’t.

You will be in awe of the knowledge that parents have amassed about Autism – about diets, therapies, about everything.  It’s all in an effort to help their child have a better life.    If you’re new to Autism, check with your AEA (in Cedar Rapids and Iowa City it’s Grant Wood), and contact the East Central Iowa Autism Society.   It’s a place to start and those connections will lead you to others.

4) A compassionate family.  Ellie’s challenges have made me a better, more understanding person.  I know that’s the case for all of us, even beyond our immediate family to our extended family members.  I’m especially proud of Chloe, for her patience with Ellie, for her constant good nature in spite of how Autism has impacted her as well. Chloe plans to work with special-needs kids when she grows up; we’ll see, she has a long time to make a decision.  But seeing therapists at Witwer and at The Homestead  has inspired her.  

The down-side of Autism

1) Not everyone is supportive or understanding.  You’ll need to step up and maybe outside of your comfort zone for your child.   When you express your concern about your child’s development and others say “they seem fine/normal” you need to go with your gut. If you think your child is behind with developmental milestones don’t wait and don’t go by what others say.  Time is critical.  Be the advocate YOUR child needs.  You’re going to need a thick skin, go ahead and get used to it. 

2) Lack of a treatment plan.  When your child is diagnosed as being on the Autism Spectrum, you will stumble around trying to figure out what to do. Is there a therapy you should be sending them to that you’re unaware of? What else are we missing?  Here’s the thing - no one maps out a treatment plan for your child at the time of their diagnosis. There are resources recommended, but it’s very different than if your child was diagnosed with a specific medical condition.  In that case doctors step in and explain what the process is and the options available to make your child healthy again.  An Autism diagnosis is not like that.  

3) You feel like you have little control.  I felt this most when it has involved Ellie’s education.  We’re very pleased with our school system, but decisions are made and sometimes you feel out-of-the-loop and with little say.  There are options, depending on the situation.  When Ellie was to start kindergarten we didn’t feel she could handle the large classroom size at our neighborhood school.  We checked into a private kindergarten/pre-K program with a small classroom size and enrolled her there.  It was absolutely the right move for her and she blossomed.  I’d do it again, though it definitely was a sacrifice with our budget.  

There is so much more I’d like to share.  If anyone would like to stay in touch or has questions, feel free to contact me in the future.  I’m easy enough to find online.  The support and contacts we’ve made have gotten us this far, and I’m so happy to do the same.