Why it's so hard for special needs families to find the right therapist

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“Wasn’t he seeing a therapist or a counselor?”

His teacher asks me with compassion in her eyes. I know she loves me and my kid, but a twinge of guilt rushes through my being. It was the same twinge of guilt I felt when one of Ezra’s after-school providers texted, “I wanted to ask if you’ve ever checked out PCIT?”

Well…yes…but…

I then go on to explain some of the challenges we have had.

All together, I’ve lost track of how much therapy my son has had. I can tell you for sure about the six months of inpatient day treatment and the eight months of intensive in-home. I can tell you about the two years of weekly occupational therapy, and the additional year or so that followed in-home.

I’m a little more fuzzy on all the outpatient therapy, as we have seen two or three or maybe four counselors, sandwiched in between all the bigger chunks.

I can tell you about the hours upon hours I’ve spent with my laptop and 25 tabs on Psychology Today’s website open. I can tell you about the times my kids have watched too much Netflix and eaten too many crap dinners while I have tried, yet again, to find the right fit. I can tell you about the times my husband has had to manage kids during dinner while I fielded 6pm phonecalls with therapists as I have – yet again – recounted our son’s history, our family’s history.

I can tell you about the time we got thrown out of a therapist’s office mid-session during our second appointment because he was an egotistical prick who wouldn’t listen to my husband and insisted we do things exactly his way rather than truly getting to know us. (Yes, this actually happened.)

I can tell you about our intake appointment for intensive in home and how our team told us, “We normally work with adolescents. We’ve never worked with a child as young as yours.”

I can tell you about the time that – after several hours of phonecalls and multiple emails – a counselor sat across from us at our kitchen table, at our first session, and said, “Well, unfortunately, I’m retiring in six months. But we will see what we can do in the mean time.”

I can tell you about the email we got five months later that said that she was retiring, but even if she wasn’t, she wasn’t sure she could help our family anymore anyway.

I can tell you about the time another therapist who didn’t have any openings recommended a “play therapist” for my child, but when we sat down with said “play therapist,” it was in an office full of no-touch breakables and a box of crayons on the bottom of a bookshelf. I can tell you that we never went back.

I can tell you about the hours I’ve spent in waiting rooms trying to keep an infant or toddler occupied while his brother gets help. I can tell you about the times I’ve laid in the back of the van with said infant because too many other kids in the waiting room wouldn’t leave him alone.

I can tell you how many hours and hours I spent in the van driving 45 minutes once a week, then twice a week, for my son’s therapy. I can tell you how we finally decided it was too much – for me and the baby – to maintain this schedule and how we quit using that practice because of the stress. I can tell you that many times since I have questioned if we made the right decision.

I can tell you about the second OT company we used who “spoiled” us with in-home occupational therapy for about a year and a half; I can also tell you how said company sent us FOUR different therapists in that time, every change with very little warning.

I can tell you how many times my Google history involved acronyms like PCIT, EMDR, ABA, CBT and more…

I can tell you how much paperwork I’ve had to fill out for intakes and evaluations, and how I spent three days last summer scanning it all and uploading it to Google Drive so that now I can just email people a link.

And those are just some of the stories about finding a therapist for my child.

I can also tell you about the time I found a wonderful therapist for myself, free through Give An Hour, who then moved to Oklahoma five months later. I can tell you about the second Give An Hour therapist I saw for myself who ended up spending more time telling me about all the remedies that could supposedly help my husband and child (like driving to Atlanta and having their brains scanned by a quack doctor) than she did telling me how I could take care of myself.

I can tell you about the wonderful marriage therapist we saw for two years, many times pro-bono or at a reduced rate, who moved practices to a town 40 miles away. I can tell you how I cried tears of joy when I found out she had moved back. I can tell you how my heart sunk when I realized she didn’t take our insurance. I can tell you about the relief I felt when I first sat down in her office after a two-year gap in treatment. I can tell you about the guilt I feel when I see her, because at her yet-another new practice, pro-bono and reduced rates are off the table and it now costs $125 per hour for me and my husband to see her.

(And we won’t even go into all the challenges of getting therapy at the VA for my husband. That’s another book and a half.)

Finding a good therapist that works for YOUR child and YOUR family in YOUR location with YOUR financial situation just is not that simple.

Finding a good therapist that works for YOUR child and YOUR family in YOUR location with YOUR financial situation just is not that simple. Click To Tweet

What are the common challenges that special needs families face when looking for a therapist?

Personality and Fit

Some people just aren’t the right personality for your child, or for you, or for both. It’s hard to explain. But when you have a great fit, you know it. When you don’t, you also know it.

So, do you forge forward to give your child stability, or do you risk moving to someone else in hopes you can find someone better?

Different Modalities

While terms like “behavioral therapy” or “play therapy” are rather generic, each therapist relies on his or her own training in certain modalities, or types/approaches of treatment. Many of these modalities are trademarked programs that require extensive additional training, licensing, or certification on top of what a therapist already has attained for his or her education.

Are you overwhelmed yet? Because I can keep going if you want…Where would YOU start?

Insurance and Money

Just because you find a great therapist doesn’t mean they take your insurance. If they do, we are talking co-pays of $25 or $50. If your child needs weekly therapy, that will add up quickly. If they don’t take your insurance, it’s a lot more than that. Last night I was quoted $150 for an intake appointment, $120 for sessions thereafter. The recommended number of sessions for this particular therapy is 15-20. You do the math – I’m too tired.

This doesn’t include the cost of gas – or having convenience foods on hand or picking up fast food to make dinners easier for the times you are getting home after therapy at 5PM and are too exhausted to cook.

Office Set Up

My next post will be a follow-up for therapists, but really. This is huge. If you are offering therapy to children, your office needs to be kid-friendly. And not just YOUR office. Your waiting area. If I have to spend the entire hour rescuing your precious objects from the hands of my children who are either there for your help or because their sibling needs your help, I can’t relax and I walk away more stressed than I entered. Help a mama out, please.

Location Location Location

Just because you find a great therapist doesn’t mean they will be close. The further you have to drive (with kids in tow) the more stress. Not to mention how the drive impacts sleep schedules, homework, dinner and snack times, getting household work done. When my child was in therapy 45 minutes away twice a week, I felt like I lived in my van. Heck, one time I even took laundry with me to fold during my son was in therapy. Desperate times call for desperate measures.

High Turnover

I’m not really sure what it is or why it happens. But it seems like therapists bounce from practice to practice to practice, leading to high turnover. Even at the occupational therapy practice that we LOVED and drove 45 minutes to, Ezra had four different therapists over the course of two years. You’ve already heard my stories above. It’s SO hard to start over with a new therapist. Rapport takes time and trust to build. When your therapist moves to a different practice or out of state it can be devastating to your progress. The thought of starting over seems so incredibly daunting.

Not Enough Brain Power

Seriously, it takes a crap-ton of brain power to research what your child needs. And special needs parents who are exhausted and in desperate need of some help for their child are in short supply of brain power. Swimming through therapy acronyms, Psychology Today profiles, modalities, treatment plans, maps, schedules, therapist credentials, insurance coverage particulars, and your budget – all while your child-in-need-of-therapy is wreaking havoc on your house and you are two hours behind in getting dinner on the table…it’s HARD. It’s like trying to make or order coffee before you’ve had your coffee.

Guilt Guilt Guilt

What if my child needs this therapy instead of that one? What if he needs an LCSW instead of an LPC? What if this costs too much? What if I chose the wrong person? What if we are doing too much therapy and my child is missing out on normal childhood stuff? What if we aren’t doing enough therapy? By putting my child in therapy am I giving him a complex? Should he just spend loving time with me at home instead of handing him off to a stranger? If I had the energy and time, couldn’t I do something similar with him at home?

Are we spending too much time in the car? What about my child’s sibling(s) – are they getting the short end of the stick? What about all the times we stop for fast food or takeout on the way home? Is the exhaustion of this therapy schedule worth it? Is it really worth the money we are paying or the debt we are incurring?

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I write this out of frustration but also with hope. Hope that this post makes special needs parents feel less alone in this part of the process. Hope that this helps friends, family, and loved ones understand just why being a special needs parent is so exhausting. Hope that it helps people understand that “getting help” isn’t as simple as picking up the phone. Hope that therapists will read this and perhaps have more compassion and understanding to those that they treat.

And finally, hope that therapy will help. I’m awaiting yet another phone call back from another therapist who maybe just maybe might be able to help. Because I’m a special needs mom, and I’ll never give up on getting my child the help that he needs.

Please stay tuned for my follow up post on what therapists can do to aid in this arduous process!!

Why it’s so hard for special needs families to find the right therapist

Beautiful in His Time is a participant in multiple affiliate marketing programs. The author of this blog may receive commission for purchases or clicks made through links on this website.