There is not one day that goes by that my son, with high-functioning autism, opens my eyes to a new way of thinking, a different perspective. He “gifts” me a fresh lens to view a familiar situation with a new interpretation.
Yet, as intelligent as our children are, their cognitive wiring is mapped differently, and for that reason, support services including speech therapy are not uncommon.
T’s weekly speech therapy twice a week at the charter school he attends includes goals that include conversation skills, understanding social cues, and helping him to regulate and manage emotions. Staying on top of his progression to make sure it is also consistent in the classroom and at home can be challenging.
To get some professional insight and tips on how parents can manage this area, I took an opportunity to interview Nancy Harlow who has been a practicing speech-language pathologist since 2006. Harlow worked with my daughter (neurotypical) for over two years, and in that time she proved herself to not only be an invaluable speech therapist for my daughter, but also a knowledgeable source of advice for speech students with autism.
Her experience having raised four children of her own, coupled with her years working with both neurotypical students and students with autism spectrum disorder (ASD), has allowed her to come up with innovative ways of adapting her practice to the individual needs of her students. The time spent talking to her provided great insight and sound advice along with a relatable-parent story about a mother and father at an individualized education program (IEP) for their son.
The unfolding of this story began as follows:
“Some of the individuals [in the room] were talking at the parents, I feel. And the father stood up and said, stop! I need you to know you do what you do for six hours. Then it’s my wife who goes home and picks up…some days are great, but often [my wife] is picking up the pieces from a very stressful day for my child.”
Harlow continues to say, “We were all kind of like humbled. And you have to remember that we’re just a piece of that puzzle.”
The feeling of being talked down to, feeling minimized, sitting in an IEP, and feeling your voice is being overpowered by those who have spent mere hours at most making decisions for your child – is this relatable? Have you ever felt this way? You are not alone. I, too, have been there.
I have dealt with my share of misspoken experts, misguided cues of direction to lead my son, and misinterpretations of our world, I saw the same story but in a much different light. Although these stories are probably not uncommon, there are ways you can stand back up and stand up stronger.
As I continued the interview, I extracted five key points that may be helpful to ensure continued growth in your child’s speech and what all parents can do to better equip themselves in advocating for their child when it comes not only to speech therapy but with all forms of therapy.
Let’s go over these five areas that your child’s speech therapist may not tell you BUT SHOULD.
1. Establish a working relationship with your child’s speech therapist
You know your child receives speech therapy regularly, but maybe the extent of your communication with them only goes as far as a name or a “hello” when you take your child to their session. If you begin by asking a few simple questions to start establishing a relationship with him/her, the therapist will feel more comfortable communicating with you as well.
A simple email or a phone call will not only support a gateway of information both ways, but a stronger relationship will, in turn, support stronger support for your child. Should a concern or question arise, you can feel more at ease to address it with the speech therapist if regular communication has already been grounded?
When Harlow was asked how often parents communicate with her and ask for updates on the child’s speech therapy, her reply was “[It is] rare.”
With more than 80 students Harlow works with at one school, she rarely receives an email or phone call from a parent asking how his/her child is doing in speech. How can we as parents support children at home if we don’t understand what they are learning? How can we communicate with them effectively if we haven’t learned their language or methods that could help us exercise those connections at home?
So, if you haven’t extended an email or an in-person dialogue in some time, initiate one at your child’s next therapy session.
2. Communicate regularly
Once you have started the “hand-shake” with your child’s therapist, be sure not to let it go to rest. It’s easy to have the first formal introduction, then forget to cultivate it. Unless you’re sitting in on each session, it would be impossible to keep up with what your child is learning every week and their monthly progression. Think about creating a reminder for yourself every other month to make a phone call or send a friendly email requesting an update on what your son or daughter has been working on, what methods the therapist has used, and how you can continue working on them with your child at home.
Ask for copies of handouts to be sent home with your child to be used as a reference. Having the handouts as a visual guide for your child can also help with the consistency and gentle reminder of using them at home.
3. Research so you understand
Let’s face it, we are not naturally equipped to know all the answers to parenting a child on the spectrum. We have learned along the way and will continue to learn. However, within an arm’s reach, we can access limitless information to help us become smarter, more knowledgeable parents.
First, start with using your observations and notes as your starting point. What areas of concern do you have? Pragmatics, understanding social cues? Self-regulation, how to manage emotions? Body language, how to read facial cues?
In addition to doing your research, additional resources can include support groups with other autism parents that can relate to the same questions and concerns. Find support groups, whether online or in your community, that you find positive and helpful. You may be surprised where you find other autism parents as I connected with another mom at a coding camp at our local Apple Store (you just never know). A valuable resource can come in different forms so the more we reach out, the more we can learn and understand our child’s world.
Utilize all there is available to you to help you make informed decisions and ask the right questions to best support your child.
4. Create your support team and advocate
Although not directly related to speech therapy, the individuals working as a team making the decisions for our child all affect their growth. The school has its appointed individuals so why not bring who you would like that can also speak on your son’s behalf. Having one reliable positive light in an Individualized Education Program (IEP) room filled with (sometimes) ego and angst can bring you a bit of calm and strength when you need it most.
“We as a team sure bring a lot of people, so it’s okay to balance that a bit.”
As said by Harlow, it’s true, right? Bring someone who knows your child and can help you advocate. Carve out some time before your IEP meeting. Put aside time to go over your talking points so whomever you choose to bring with you can support you in the best way possible. Whether you want a change of goals for occupational or speech therapy, you not only have a clear agenda in place, but your support team will know how to best provide back-up to speak for your child to get what they need.
5. There is not one child the speech therapist knows better
The final bullet point of advice: Although the speech therapist is the expert for language, you, the parent, are and will always be the expert of your child. Aside from degrees, education, and experience when it comes down to it, the parent always knows best.
When you are at home with your child, create a journal dedicated to making notes that you observe of them. As you scan over your notes, are there areas that standout that you feel should be made into a goal that can be worked on in speech? Maybe you’re not sure how to address a concern and what type of therapy it falls into? Even Harlow admits to being surprised what type of therapy a behavior falls into and sometimes it can overlap into more than one. Not sure of something, research and ask.
At that end of the day, the amount of time you have spent with your son or daughter in their life will always outweigh anyone your child sits within an IEP room. Yet, we know that there are therapists, teachers, aids that do truly make a lasting impact on our children, but without their parent or guardian who manages the late nights, the sicknesses, getting them to eat a semi-healthy meal, are the ones that reign.
Your child’s speech therapist may have the right intentions, but doing your part to communicate with them to stay informed throughout a consistent basis is welcomed (and encouraged) so they can provide your child with the speech support that works in their best interest.
Reflecting on the father having to stop everyone in the IEP meeting was a gentle reminder that even highly-educated specialists who have the best intentions of supporting your child can too misplace his/hern footing. If you work together with your child’s speech therapist by establishing and using the above key points to guide you, you will be empowering your parent advocacy and the support for your son or daughter.
This article was featured in Issue 99 – Navigating Relationships With Autism