There are many things I have learned during the almost five years since our precious son Miles has blessed our family. If I had the opportunity to only tell you one piece of advice to equip you as you navigate the path of raising a child with autism, it would be to ADVOCATE!
Advocating for your child matters at all ages and stages. Whether it be your infant who is missing many developmental milestones, a toddler who has too many red flag characteristics to ignore, journeying through the world of special education services and individualized education plans, or preparing a teen with life skills to transition into adulthood, I believe that advocating is the most important thing that you can do as a parent.
Along my journey of parenting a child with autism there have been many roadblocks to receiving help for Miles, and they’ve mainly taken the form of people.
When Miles was around 6 months old, I knew that there was something different about the way he was developing. He was not meeting developmental milestones like his older sister had. When I addressed my concerns with well-meaning friends, family, and our pediatrician, I was met with lines such as, “boys don’t develop at the same rate as girls” and “each child develops at his own pace” and “stop worrying, he’s fine.” So, I reluctantly waited.
The advice people were giving me was information that I already knew, and it was advice that I am sure I had told other parents before. I am a teacher by trade and fully equipped with head knowledge about childhood development. As Miles continued to grow, the gap between him and typically developing children continued to widen. Although I was regularly told by others “Miles is fine”, “he is developing at his own pace” “my son was the same way” or “my cousin’s child did that too, and she turned out just fine,” I was persistent in taking note of ways Miles was developing differently. He didn’t respond to his name, he could only say 3 speech sounds to communicate, he had extreme reactions to being separated from me, he flapped his hands, he spun himself in circles, and he made other things spin and watched with intensity.
Eventually, I stopped listening to my well-meaning friends and family. At Miles’ two-year check up with his pediatrician he was referred for developmental testing. I had come to that appointment prepared to argue my case, if you will, about how Miles was not developing as expected and that he displayed numerous characteristics of Autism Spectrum Disorder. Fortunately, I didn’t have to argue my case this time. The doctor agreed that he needed to be evaluated further and that referral began our process of early intervention and receiving a diagnosis of Autism. I was relieved that Miles was going to get help. I felt like I had been struggling to get people to understand what I had been trying to tell them for the past 18 months.
My only regret regarding advocating during the time Miles was 6 months to 2 years old was that I didn’t speak louder and more persistently so I could have been heard and he could have received help sooner. I firmly believe that the early diagnosis and vast amount of early intervention he has received has played a vital role in the success that Miles attains today. I sometimes wonder how things might be different if he had received help at an earlier age.
However, I did learn through that experience that no one else would stand up for Miles the way I would. I knew him better than any evaluation results, therapist, doctor or teacher. From the time Miles was two years old until today, I have learned that it is important to express concerns and requirements to those who are involved in Miles’ care.
Through every step of his journey, I have had to be a firm and unwavering advocate for Miles. I’ve sat through many appointments and meetings and stood my ground against the experts to ensure that Miles will have the tools he needs to succeed. I am not certain why, but from my experiences, it seems that state or federally funded establishments that provide services for kids with special needs frequently offer the least amount of assistance possible.
Is the problem related to funding or overcrowded case-loads of therapists or some other factor?
Seven Simple Steps to Assist with Advocating
1. Keep a record of important concerns or behaviors to share with experts; write down specific examples.
2. When going to appointments and meetings, ask another adult to come with you. There will be many things that are said and having an extra set of ears to take it all in can be very helpful.
3. Ask for permission to video or audio record the meeting. This way you can be certain of the details of the elements that were discussed.
4. Ask questions! If you don’t understand what is being recommended or described, ask questions until you are confident in the explanation.
5. You do not have to make immediate decisions. Take time to process everything that you have heard. You do not have to sign anything or make decisions about your child’s care until you are ready.
6. If you do not agree with the recommendations of the experts for your child, speak up! Let them know what you do not agree with and tell them what you would prefer.
7. Lastly, remember the golden rule! Treat others the way you want to be treated. Although it can be difficult to keep calm and collected when you are advocating for something and someone you are so passionate about, let rational discussion prevail in order to accurately communicate about your child.
In a few short weeks I will be in another meeting as the Individualized Education Plan for Miles is written as he prepares to enter kindergarten. There will be many professionals at this meeting: special education teachers, speech therapists, principals, regular education teachers and me. There may be differences of opinions on the services, support, and accommodations that Miles will need to be able to access his kindergarten curriculum. I will be there as an equal and valuable member of his IEP team to advocate for what is necessary for Miles to achieve success.
Brandi Brown is a wife, mother, and teacher. She struggles to wear each of these hats equally. Her self-perception is that she is a neglectful wife and a mediocre mother and teacher. But actually, she is exactly what she needs to be, when she needs to be it.
Be sure to follow along with the rest of our series, Coping Skills for Families Living with Autism, for even more encouragement for the journey!