Parenting a Special Child

I doubt you really planned for this – special needs parenting.  You probably didn’t read books about “parenting autism” while you were pregnant or while you were waiting to adopt.  Most of us weren’t autism specialists, and some of us didn’t even know that autism existed.  Autism just wasn’t on your radar.

No, you were just a regular person.  You were a regular person who became a parent.  Then, suddenly, BOOM!  Your child received an autism diagnosis and you immediately became an autism parent.    

With that diagnosis of autism, you are immediately granted a special title:  special needs parent.

Now, you did nothing special to earn this title.  You never took and passed the “Welcome to Autism” course as presented by your pediatrician.  You don’t have exceptional patience, nor do you have remarkable knowledge or understanding about special needs or autism.  You aren’t uniquely equipped in any way. Sadly, you have no superpowers.  Bummer, right?!


So many times, we hear people say things like:

“I don’t know how you do it.”

“You are so strong, I couldn’t do what you do every day.”

“I wouldn’t have the patience or understanding to “deal with” a child on the spectrum.”


I believe that people mean well when they say these things.  Perhaps they admire you and the job that you are doing as you parent your child on the spectrum.  Sometimes though, as a parent on “this side of the fence,” these sayings can be frustrating.

We know that we aren’t special.  We don’t have all the answers.  We have days where we question every little decision.  Some days we cry and definitely don’t feel “strong,” as others might assume that we are.  You might even want to shout from the rooftops, “I’m not special!  I’m not any better equipped for this than any other parent!”  Again, we have no super-human, autism-parenting know-how…yet here we are.

I write this to encourage you.  On those days where you feel clueless, helpless, or otherwise less than that superpower persona that you think the world is holding you to…it’s okay.   Breathe.  You aren’t meant to be Super Mom or Super Dad.  You don’t have to know everything or be everything.  It is okay and normal if you don’t know all of the answers.


So how do we do it, you ask?

The answer is simple:  we love our children and will do whatever it takes to give them a happy, successful life.  That’s it.  We are just doing what every other parent in the world is doing – our “normal” is just a little different from that of neurotypical parenting.

We might not have the answers, but we find someone who does.  We seek out professionals – doctors, specialists, therapists.  Our days are filled with research and therapy.  We read books, scour the internet, and talk to other parents who have walked the autism path before us.

We have been given an extraordinary mission: to parent a child with a disability. We have been given a very important job, and we rise to the occasion. I have never thought myself “special,” but I was given a son who is.  I’ll do what it takes to give him his best life, to be successful and to be happy. I’ll sacrifice. I’ll love him. I’ll love him more than I love donuts… and I really love donuts.

Deidra Darst is a speech language pathologist, autism mom, and State Director of the Mountaineer Autism Project.

“Knowledge is only rumor until it lives in your bones.”

Deidra Darst is a speech language pathologist, autism mom, and State Director of the Mountaineer Autism Project.

“Knowledge is only rumor until it lives in your bones.”

The Asaro Tribe, Papua New Guinea

I recently read this quote, and it really resonated with me as an autism mom. At first reading, it might seem a little odd, but just think about it for a minute…knowledge is only rumor until it lives in your bones…

Don’t we all feel that way as parents to children with special needs? How often do we say, “Until you live it every day, you wouldn’t understand it.”

Maybe you thought you knew. Before you had kids, you knew of autism. Maybe you knew the clinical definition. Maybe you even knew someone with autism. Maybe you were like me and worked with children on the spectrum. You knew what it looked like, and you weren’t even taken aback by sensory issues or social communication deficits.

As a speech language pathologist, I worked with children on the spectrum. I could see autism traits in strangers at the grocery store…but until I lived it every day with my own son, I had no idea, really.

I had no idea that it’s work, day in and day out.

I had no idea that it can be a constant battle for services.

I had no idea that it’s sleepless nights and exhausted days that only strong doses of caffeine can manage.

I had no idea that it’s sudden attacks of worry about their future.

I had no idea it’s sometimes two steps forward and three steps back.

I had no idea that it’s occasionally jealousy and resentment when you see their typical same-aged peers do the things that your child cannot yet do.

I had no idea that everyday tasks can be so challenging.

I had no idea of the isolation you sometimes feel living this autism journey.

I had no idea just how expensive it can be.

Since the knowledge of autism now lives in my bones, I have learned some amazing things:

I know that an autism diagnosis doesn’t change your child or the love that you have for them.

I know that kids on the spectrum work harder than other human beings on the planet.

I know that every milestone is hard-earned and should be highly celebrated.

I know that the little things are truly big things.

I know that the people who dedicate their lives to helping these kids are real heroes.

I know that our world isn’t necessarily autism-friendly, and we need to work really hard to make it more so.

I know that this autism journey is often an uphill battle, but our kids are worth it and deserve the best.

So here is the knowledge that lives in our bones – may we know it, and use it for good.

What is AAC?

Deidra Darst is a speech language pathologist, autism mom, and State Director of the Mountaineer Autism Project.

What is AAC?

AAC stands for “augmentative/alternative communication.”

I bet you already know a little about AAC!  AAC is basically anything that you use to communicate that isn’t speaking. Writing, signing, gesturing, facial expressions, picture exchange, and speech-generating devices are examples of AAC.

Who Needs AAC?

AAC helps many different people, including those with autism.  Some children have some speech, but still needs some extra help to communicate more effectively.  They may need “augmentative” communication to add to their verbal communication.  Your child may be nonverbal.  In that case, we would be looking at “alternative” communication as another communication option.

What Are AAC Options?

Thankfully, we live in a time that allows us to have numerous AAC options.  We divide AAC into two main categories:  unaided and aided.

Unaided AAC requires nothing “extra.”  This could be using facial expressions, gestures, or sign language.  Unaided requires nothing more than yourself!

Aided AAC would mean that a tool of some sort is required.  This could be low-tech or high-tech.  A low-tech option might include writing with pen and paper or using a picture exchange system.  A high-tech option would be using an iPad with a communication app.

But I Want My Child to Talk

Many parents are apprehensive to introduce AAC to their child.  These are two very common things I hear from families in regard to AAC:

“…But I want my kid to talk.  She won’t talk if we do this.”

“I don’t think he’s ready for anything like that, it seems too complicated.”

First of all, research shows us that AAC actually promotes verbal communication and improves language skills.  I have personally seen this with my own son, who uses a high-tech AAC device.  Last month, he was excited to see a train.  He used his device to say, “train,” then he immediately turned to me and verbally said, “train.”  The AAC device by its very function provides a model for the user!

My son was able to participate in Trick-or-Treat this year because he used his device to communicate!

Everyone has wants and needs to communicate.  Imagine going through your whole day without being able to say what you want.   Oh, and you cannot share your thoughts or ideas with anyone either.  You can’t say, “I love you,” or “my tummy hurts.”  You can’t share that funny story from your day, nor can you ask, “What’s for dinner tonight?”  I imagine that would be very frustrating.  Research shows us that providing AAC options actually decreases frustration – because communication is powerful!   

Another great thing that research tells us is that we don’t have to wait for specific prelinguistic skills or wait for a certain age to introduce AAC.  If your child needs it now, we can introduce it right now!  We should always be assuming that a child has the ability to communicate, we just need to find them a mode of communication.

I encourage all of you to see AAC for what it is – communication. It doesn’t matter how we communicate, what matters is that communication is an option.  If you can speak, good for you! But for many people, speaking is difficult, or even impossible. I am so thankful that we live in an age where we have so many communication options available to us and those we love.

Who Can Help Us?

If you feel that your child needs an alternative means of communication – or an additional means of communication – you need to find a professional.  Speech language pathologists (SLPs) can assess your child’s current communication abilities and work with you to determine his or her needs.  Every child is different, and their needs are unique as well.

Good luck to you on your AAC journey!


American Speech, Language, Hearing Association – AAC

ASHA AAC Practice Portal


Carr, E., & Durand, M. (1985). Reducing behavior problems through functional communication training. Journal of Applied Behavior Analysis, 18, 111–126.

Drager, K. D. R., Postal, V. J., Carroulus, L., Castellano, M., Gagliano, C., & Glynn, J. (2006). The effect of aided language modeling on symbol comprehension and production in 2 preschoolers with autism. American Journal of Speech-Language Pathology, 15, 112–125.

Kasari, C., Kaiser, A., Goods, K., Nietfeld, J., Mathy, P., Landa, R., . . . Almirall, D. (2014). Communication interventions for minimally verbal children with autism: A sequential multiple assignment randomized trial. Journal of the American Academy of Child and Adolescent Psychiatry, 53, 635–646.

Lüke, C. (2014). Impact of speech-generating devices on the language development of a child with childhood apraxia of speech: A case study. Disability and Rehabilitation: Assistive Technology, 11, 80–88.

Millar, D. C., Light, J. C., & Schlosser, R. W. (2006). The impact of augmentative and alternative communication intervention on the speech production of individuals with developmental disabilities: A research review. Journal of Speech, Language, and Hearing Research, 49, 248–264.


Gift Ideas

Deidra Darst is a speech language pathologist, autism mom, and State Director of the Mountaineer Autism Project.

With the holidays upon us, we here at the Mountaineer Autism Project thought you might be looking for gift ideas  Buying for a child on the spectrum can be difficult, but no worries, we are here to help!

Below you will find some of our favorite toys, sensory items, and generally-loved things for our autism population.  The pictures are clickable links to help guide you to the perfect gift for your child.

Fluffy Slime - Meland 6 OZ Jumbo Fluffy Floam Slime Stress Relief Toy Scented Sludge Toy for Kids and Adults, Super Soft and Non-sticky, ASTM Certified, 4 Colors 

Slime is a big hit with young kids, teens, and adults alike right now!  Along those same lines, you might be interested in PlayDoh, Gak, or even foaming soap – we like this one:

Fun House Kids Foam Soap Wild Watermelon & Bubble Gum,2 Pack

These visual sensory items are often very popular as well:

BESTOMZ 3 Pack Liquid Motion Timer Bubbler for Sensory Play, Fidget Toy


DGJWH LED Gloves Flashing Finger Light Gloves 3 Colors 6 Modes for Halloween, Christmas, Novelty Light Up Toys

Mini Flashing Light-Up Spiky Balls (12 pcs)


Spinners/tops/etc are often winners too!


Bolz (BOLZA) Bolz Train Spinning Top Toy


Wind-up toys are fun and cheap:


Wind Up Toy,28 Pack Assorted Clockwork Toy Set,Original Color Wind Up Animal Party Favors Toy Great Gift for Boys Girls Kids Toddlers(Contents and Color May Vary)


If you’re looking for some big-ticket items, here are a few things that we really enjoy:


Excellerations SINGTREE Singing Tree Marble Run

ActivPlay 14' Round Trampoline & Enclosure, Navy Blue


People often ask what the best “learning toys” are for their children.  We love anything that requires hands-on work and thinking skills.  Examples would be puzzles, put-ins, and building toys (like Legos, Lincoln Logs, etc).  If your child is working on pretend play skills, play kitchens and dress-up items are wonderful gifts.  “Old School” toys are truly timeless.  Blocks, puzzles, books, finger paint – you know, the things that don’t require batteries!  Never underestimate the fun one can have with cars, trains, and baby dolls.

Some great stocking stuffers might include bubbles and chewy tubes. 

Some Do-It-Yourself toys end up being the most-loved items for our kids.  Homemade rain sticks, water bottles filled with water, soap, and glitter can provide hours of entertainment.

As with anything concerning your child – just think about what they enjoy.  If she likes animals, she might love animal figurines.  If he likes trains, I bet a train set would be a hit.  (And if they put things in their mouth, always be cautious and keep that in mind when you make your purchases!)

Remember, play is a child’s work!  A playing child is a learning child.  We must remember that, even though they’re on the spectrum, kids with autism are just that – kids.


Happy shopping!


Delayed But Not Done: Why We’re Fighting Against the Senate’s Bill

Jill McLaury is the Owner and Director of Bright Futures Learning Services, Inc. and a member of the MAP Board of Directors.

As the Senate chamber readies its health care bill, there are concerns that the bill would include devastating cuts to services that people with disabilities rely on.

I’m very concerned, for many reasons. Advocacy groups like the Mountaineer Autism Project are worried, too.

For one, we’re worried that rural states like West Virginia have more uninsured and underinsured people per capita than other non-rural areas. So we rely more heavily on Medicaid.

The House bill that the Senate is now re-working converted Medicaid to a per capita cap system. Under this plan, the federal government would annually offer a fixed amount of money for each Medicaid beneficiary.

Around 210,000 of West Virginia’s kids are currently insured by Medicaid. If one in 68 of these kids have autism, that’s 3088 kids.

Tell me—those of you will children with autism—how much do you think the government would allot for your child, and do you think it would be enough to cover the needed health care services they need in any given year?

Let me put this question into a bigger context.

I grew up in Wyoming County in the early 80s. I was a child with a learning disability, but I was lucky. My grandparents had resources. My parents weren’t too intimidated by the school system to advocate for my right to appropriate services.

This struggle had a lasting effect on me. I majored in special education at Marshall University. I went on to graduate school in behavior analysis at the University of North Texas. I came back to West Virginia as a Board Certified Behavior Analyst, determined to meet the unmet needs of the kids in the southern part of the state.

To do this, I had to start from the ground up— start my own business, train my own staff, etc. I started in my grandparent’s house, then to a one room church, to a shopping center, now to a newly constructed facility that will open this summer. A picture is attached.

But here’s the kicker: in order for me to provide life-changing therapy for children with autism in our state, my business must be paid, so that my staff can be paid. This payment comes from billing insurance.

Let’s all think back and remember the time when families with children with autism had NO options but pay for health care out-of-pocket, fearing for the next health care emergency that would threaten the vitality of the family.

That was huge. It was a big step in the right direction, and it’s one we’re going to fight for.

Kids came to us who couldn’t even speak a single word went on to finish kindergarten and first grade with their typically developing peers. Others who remained nonverbal learned how to communicate through assistive technology.

These kids are the amazing victories that make this fight worthwhile.

Aside from preserving essential health benefits that protect those with pre-existing conditions, we must protect business owners like me who rely on billing insurance to survive.

Although I currently can’t bill Medicaid specifically for ABA service, this program provides an array of in-home and waiver services that assist families of kids with autism.  For some families, these are the only services their children receive, these services are also what allows parents to work.

It’s an intricate web of needs, services, and challenges that we address when we struggle to provide care in West Virginia. Thanks to the Affordable Care Act, we were given the opportunity to begin building an infrastructure to address these issues. More services are provided, more providers are employed, and more kids receive much needed therapy.

But once you begin pulling a string on this web, well- it all unravels. Our small, fragile infrastructure is dismantled.

Repealing and replacing the Affordable Care Act with this Senate bill will surely do this.

If any of this concerns you—losing protections that keep kids insured, and cuts to the Medicaid program—you must, must contact your congressional delegation, particularly your Senators, and particularly Senator Capito.  With the Senate rushing their ACA repeal bill to a vote, we don’t have much time to convince them why these protections mean so much to our community.

Save the Date! The 2018 MAP Conference

Susannah Poe is the founder and director of the WVU CED’s Intensive Autism Service Delivery Clinic, and a member of MAP’s Executive Team.

We have already started planning for next year’s annual MAP conference! Mark your calendars for Friday, April 20, 2018, and come spend the day with other families and professionals interested in learning best practices for young children with autism at the beautiful Bridgeport Conference Center. Right off of I-79 between Fairmont and Clarksburg, the Conference Center is located in the Charles Point development and is home to many excellent restaurants and hotels.  We will offer the same mix of family-focused training as well as a BCBA/professional track, but hope to add more time for participant networking. We are also listening to feedback from this year’s meeting asking for sessions relevant to other treatment team roles, such as psychologists, OT’s and speech therapists. Be thinking about what topics you would like to have covered during this day long training, and we will send out a survey for your ideas and suggestions later in the fall.

This year we were fortunate to have professionals and family members representing all areas of WV, and our reviews were great!  More than 125 attended, and while we had a few technical problems with audio equipment, the day was a huge success. After our first conference, we have learned a little more about what you would like and how we can make the day run smoothly (have our own A/V professional traveling with us for all emergencies) and increasing the opportunities for social interaction. We can’t wait!

This conference is dedicated to providing education and information on evidence-based methods for families who have young children with autism, and to support the professionals who work with those families. Mountaineer Autism Project is a unified group of parents and professionals whose goal is to have one voice in the state dedicated to empowering parents, supporting best practices, providing accurate and up-to-date information, and making lasting changes in the state to enable West Virginia’s children with autism to achieve their highest potential. We provide advocacy, family support, and information resources.