A month or so ago I asked parents on Facebook if they would like to share their story of raising a child with special needs. I had several wonderful parents respond and I'm excited to share this first story with you!
My hope is that Lesley's story will:
ONE, encourage you as a parent who has a child with special needs...
Or TWO (if you don't have a child with special needs), enlighten you a bit on what it is like to have a child with special needs, both the trials and joy.
I hope to bridge the divide and increase a sense of support through this parent interview series.
I hope to bridge the divide and increase a sense of support through this parent interview series.
So here we go!
I recently had the pleasure of interviewing Lesley, who is an intelligent and beautiful single mom to several awesome kids, including one that has special needs.
She took some time to share her story with me (and you)!
Watch Below:
Tell me a little about your family?
I am a single mother of 4 kids: 2 boys and 2 girls, ages 9,7,5,3. My oldest son, Stryder, has Austim Spectrum Disorder, ADHD, Speech and Language Delay, Sensory Processing Disorder, and Auditory Processing Disorder. We live in Bent Mountain, and we enjoy the wide open spaces and close knit community our little town has to offer. We enjoy family activities like bike riding, hiking, swimming, and learning new things. We also do a lot of mindfulness work in our home. I am a Registered Nurse by trade, and I also take part in advocacy work for various causes.
What are the biggest challenges you've experienced as a parent with a child who has special needs?
The biggest challenge is inclusivity. When I say inclusivity, I really mean it. There is a real lack of cohesive inclusivity, even in today's society. What does inclusivity mean? It means knowledge. It means understanding. It means accommodating. It means accepting. It means challenging our own blind spots and lack of knowledge in a way that help us grow and makes us better allies and friends to those who may have differences that we may not always understand. It starts within ourselves and within our families.
Admittedly, my own biases towards autism was one enveloped in fear and apprehension. I could never imagine the lessons I was to learn and the I was to unlearn. I've certainly made mistakes along the way. I've gone from not being able to even say the word "Autism", to openly speaking in detail about the specifics autism and how it impacts my son and our family.
In reality, we have to be the change that ushers in true inclusivity within our communities. It does not mean we must all be outspoken activists; there are many other ways to advocate for diversity acceptance!
There are many other ways to advocate for diversity acceptance!
Invite a child who may have special needs to play at the park, be patient and loving, give the relationship time to grow symbiotically, ask the parent or guardian questions about specific needs, respond without judgment, let go of ingrained ideas surrounding Autism or other disabilities (which are mostly likely false to begin with) and strive to see the person, not the label.
One example is finding enriching extra-curricular activities for my son that are positive experiences for him. He may need extra help or attention in certain situations. He is probably going to need a staff member assigned to help him navigate social situations that may be overwhelming to him, help keep him focused and directed on the activities, help facilitate his sensory breaks, and encourage him to participate with the group and move fluidly with his peers. Because of these needs, finding something that works can be a bit of a challenge sometimes.
My neurotypical children may say, "I want to do soccer." So I sign them up and they go with excitement. They listen to instruction, make friends, learn skills, and have a great time. But for a child with special needs, it is much more involved. There may be off days. There may be trouble with transitions. There may be disruptions and difficulties. There may be frustration and fear. And: This is ok.
The challenge lies with helping others to see the function behind the behavior. This is also an important part of fostering inclusivity. Just because my son may have had a hard time last week joining the group, doesn't mean we should give up. I always strive to explain to teachers, mentors, and coaches that this is my son inviting them into his world. They have the awesome opportunity of showing him that he is important, that he matters, and that he can do it.
What have been the biggest successes you've experienced?
I think focusing on successes is really important. Stryder was in Speech and Occupational Therapy before age 2 to help him develop communication skills. He really was not talking at all and I started learning about non-verbal toddlers using sign language. I went to the library, got a book on Signing Exact English and started teaching him. Then, he signed "bird" for the first time, and I was astonished. Soon, Stryder had picked up signs that I didn't even know. This helped decrease his frustration and be able to navigate his environment. This was a big success. Then when he started talking around age 5, one of the first things he said was, "Love you, momma."
Then when he started talking around age 5, one of the first things he said was,
"Love you, momma."
I thought back to all those years I wondered if he would ever speak at all and how my heart would just ache for the challenges he faced. It was a wonderful, touching moment that I will always be grateful for.
More recently, we've incorporated mindfulness teachings in our family. I am a big believer in teaching emotional intelligence to kids. We have a Calm Corner in our home that is a designated safe space for the kids to check in with their emotions when they are feeling frustrated, upset, sad, or anxious. We do Time-In's instead of Time-Out's. We focus on our emotions and handling them in appropriate and safe ways. It was fairly easy to teach this concept to my kids and the best part is that it is really fun, too. We've learned a plethora of mindfulness exercises that we keep in our imaginary toolbox and pull them out when we need to use them. It has been a worthwhile effort as I see my kids applying these tools in situations they may have difficulty with. It has really helped keep an open and healthy emotional dialog between the kids and me. We honor the fact that emotions are a healthy part of living.
We honor the fact that emotions are a healthy part of living.
What would you like people to know who don't have a child with special needs?
I think it is most important for them to know that children with special needs are really just children.
Children with special needs are really just children.
I know it can be intimidating. Maybe there is even unaddressed fear because of lack of knowledge surrounding how to handle a child with special needs. But push through these things and you will find a child who loves Transformers, hates green beans, and is perfectly content telling you every fun fact about the Titanic.
My point is that my son, Stryder is exactly how he is supposed to be. He is amazing and capable. Not because he is autistic but because he is a kid who has amazing capabilities, outside of the autism. Autism may provide a framework for understanding the context of certain things, but it is hardly the framework in which we view every thing.
Yes, Stryder has autism. But he isn't all autism. He is Stryder.
Do you have any encouragement or words of wisdom for parents who have a child who has special needs?
Yes! I have a few nuggets of knowledge that have really helped me. I had friend share something that profoundly impacted me recently. We were talking about how our lives as special needs parents are crammed with appointments, therapies, and activities. There is always the next thing to try and the next place to go. She helped me realize that it is ok if something isn't working out.
She helped me realize that it is ok if something isn't working out.
It is ok to set a boundary addressing activities that may not be helpful. We must make time for healthy self-care for ourselves and our family.
Connecting with others is essential. There is an entire community of parents and caregivers who understand. I promise, they really understand anything and everything.
I promise, they really understand anything and everything.
Getting involved in your community and get involved in advocating for your child. Ask questions, attend trainings, network with others, and embrace your leadership role as a parent. Your child depends on you and you are their biggest support!
Finally, it's a journey of ups and downs. When you know this, you can embrace it. Even the difficult moments can be honored and respected for what they teach us. New challenges pop up and become part of the routine and life goes on with constant readjustment. This is a big part of the journey: Adjusting to the adjusting. This is a big part of the journey: Adjusting to the adjusting.
It really becomes a lifestyle and though it may be different, it is rewarding.
Thanks so much to Lesley, again, for sharing your story and your wisdom!!! I really enjoyed talking with you and know it will help others to hear your words!
Be sure to check out our other parents' stories for more encouragement and great insights!
PS- If you're feeling alone and stressed, join our
online parent support group!
It's time to thrive and not just survive.
PPS- We have several music therapy groups this Fall and registration ends September 7! So be sure to check them out.
See you soon!
~ Noel
