When we received Isla’s autism diagnosis we didn’t really know where to begin. There are so many different methods of treatment, so many different opinions, the matter of who will pay for these things, because none of them are cheap, and what is the best fit for our family.
On top of that we were working with the regional center (I think this varies from state to state, but basically this is the organization that represents the state and the programs and resources they offer.), our doctors through our insurance and doctors through a local university that has an autism research center. Each organization has their own set of lingo, procedures and forms. OMG, the forms. I have filled out every form, questionnaire and developmental inventory under the sun on this girl, all of which focus on all of her shortcomings. I got so used to talking about all the things that she couldn’t do that when someone asked me what her strengths were I was at a complete loss. Yeah, major mom fail, but that’s another story for another day.
So here we were, complete foreigners in this world, surrounded by all these “experts”. Who were we to question them? They all seemed to be in agreement that Applied Behavioral Analysis Therapy (ABA) was the best place to start. It was also the only thing our insurance was willing to pay for. I was just so excited that someone was acknowledging our struggle and willing to help, I never thought to question it.
There were many points along the way where I felt like this wasn’t going to be a good fit for our family, but I kept giving ABA therapy the benefit of the doubt. How could the most common and most successful method of treatment be wrong for us? Here was the life line I so desperately wanted. I wasn’t about to stay on my makeshift raft and hope for a better yacht to come by.
With a background in elementary education, I felt like I came to this parenting gig with a pretty well stocked bag of tricks. This certainly lead to the majority of my frustration with myself when it came to helping Isla because I couldn’t shake the feeling that I should know what to do. I had experience with children with ASD, but I was certainly no expert. I was looking forward to getting new strategies to try that were tailored specifically to the areas Isla was struggling. I was optimistic that if we made the sacrifices of having a therapist in our house everyday and put in the hard work we’d have the same results so many other families had.
Well, that’s not what we got. Turns out most therapists don’t have much more education that a handful of Early Childhood Education units and training provided by the company. When pushed for specific, concrete examples of interventions and the models they used, no one could provide me with any answers. My favorite response was, “We use a variety of strategies to help every child!” Ok, but what about for this child right here?
We knew this wasn’t working, but felt stuck with our options. We decided that we would ride out the rest of the summer and wait until her IEP with the school district and hopefully we would get a better option. Something was better than nothing, right?
That same day that we had conceded, we got a call from the regional center that Isla’s name had come up on a waiting list for an ASD preschool that had ABA style therapy embedded in the program along with a speech therapist, occupational therapist, behavioral therapist and psychologist. This seemed like the perfect solution because we didn’t disagree with the therapy, just the manner in which it was being applied.
Throughout this process we have heard a million times that as parents we are the best advocate for our daughter. We know her best and we have the ultimate say in what, if any, programs we choose. This wasn’t news to us, but it had been said so many times it became background noise and lost all meaning.
When we got the call for the new preschool, I had an overwhelming feeling like I had given up on Isla and her chance at success. I was agreeing to something that wasn’t offering any benefit, was placing a burden on our family and just all around a bad fit, all because someone said that that was our only option, when it turns out that wasn’t even true!
I believe you get moments in life that serve as symbols to prove to you that you are exactly where you should be or are doing exactly what you should be doing. The timing of her name coming up on the waitlist was so coincidental I couldn’t help but think it was a sign from The Universe saying, “Hello! Don’t give up! You were right, this isn’t the best thing to do!”
Navigating this autism world is confusing and frustrating. I’m learning that I really do have to advocate for ev.er.y.thing. Our case workers are not the advocates. They are basically the middle (wo)men who fill out paperwork to get the funding for the program. They will not tell me the names of the best programs, they will not research the best theories to put into practice. I have to come to them and say exactly what we want to do and their job is to tell me whether we can access it or not. I have to do all the leg work because unless you ask for something specifically, you won’t get it.
There is a commonly used expression in the ASD community- if you’ve met one child with autism, you’ve met one child with autism. Everyone is so quick to tell you that autism looks differently on each individual, yet there is such a black and white, one size fits all approach to treatment. ABA is the go to and while I know so many families have had huge successes with it, it doesn’t work for everyone. Unfortunately, each ABA company is run very differently, so your experience varies widely. It is possible that we would have had better success with a different company and had we not gotten the opportunity to go to the preschool, we may have tried that, but Isla learns best amongst peers and that’s just not something she could have gotten from in home therapy.
So if you’re trying to navigate this world, whether it be ASD or something else, and you’re looking for someone to tell you that it’s okay to follow your gut and do what you think is best for your child, then here it is. Try it, see how it goes, but if it just doesn’t feel right, it’s probably not and it’s okay to speak up and say, “This isn’t working. What else can we do? I’m here to tell you that there are other options out there.
You may not have access to a preschool like the one we were so fortunate to find, but chances are there is a combination of other services in your community that can serve you just as well. I feel like the good programs are like speakeasies. You have to know the right people to ask and know the right passwords to access them. You’re going to have to talk to strangers in similar situations to get the right information and be a squeaky wheel until you find what you’re looking for, but it will all be worth it to find the best way to help your child and your family.
Say it with me now. It’s going to be okay. You are going to follow your gut and do what you think is best for your child, despite what anyone thinks and your everyone is going to be okay. You have to advocate for him or her because no one else can do it. You are the expert on him or her. I know that sounds scary and you don’t want to be annoying and bug people, but those people get paid for you to bother them. You don’t have to be mean about, but stick to your guns. They will get over it because they know you are just trying to do the best for your child. Listen to your gut, whether it’s ASD therapy, potty training, formula vs breastfeeding, co-sleeping, or any of the other issues people care way too much about. Your gut will always lead you in the right direction of what is best for you and your family and you never need to apologize for that.
Katie McTaggart says
Oh Heather! We have been down a similar road and are still negotiating it with Stephanie, even at 34. When she was in high school and EVERYONE was pushing for full inclusion for their kids, Tom and I were pushing to have her in the Special Ed classroom more! We could see no benefit to having her in a sophomore biology class when she could have been in the special ed room working on life skills. It’s OK to NOT go with the flow! Keep up the good work!
Thanks, Katie! The more I hear that, the better I feel!
Karen Eley says
What a great mom you are Heather!!
Thank you, Karen! <3
Sheila Rodriguez says
I’ve been reading your stories and I swear it’s like my thoughts written down. I am a new autism mama. My son was diagnosed at 20 months old and I struggled so much with that. We are now struggling with ABA. I’m looking to contact the regional center as well. He’s now turned 2, but cannot attend the school district preschool until 3 years old. I am also in Northern CA, in the Bay Area. And I’m also a teacher ready to have a 2nd baby. It’s crazy how similar our stories are and your words have impacted me so much! Thanks for all of this.
Hi Shelia! 20 months is so young, so kudos to you for being on top of it to get an early diagnosis! My advice to you now, almost 6 months after writing this post, is to keep searching for an ABA provider that’s a good fit. They are not all created equally, but there are really good ones out there. We started up again about 3 months ago and it has been a great addition to her preschool program. And definitely contact your regional center. The majority of our interventions came from our RC until the 3rd birthday. I wish I could offer more tailored advice but each area really does have such different opportunities and programs. I know it’s a lot to take on, but it sounds like you’re already doing a great job of advocating for your son. Thank you so much for reading!