Ashley, of Rocky River, is the mom of one son.
What do you do to relax?
Exercise, go outside, swim
What benefits has Connecting for Kids brought to you and your family?
My son has had opportunities to build on social skills. He really struggles to respond to peers and engage in play with peers. Teach Me to Play has given him a chance to play with others in a more structured setting. He loves attending and always asks when he gets to go to "play group" again.
Which have been your favorite Connecting for Kids resources?
Teach Me to Play, the speaker series (these are so important for families that may be new to a diagnosis)
The area where I have grown the most...
Advocacy. You are and will always be your child's biggest advocate. Pre-diagnosis, I would have just sat back and trusted what any professional said or recommended. I would have let a stranger guide where his life would go.
Then it became obvious that something was going on before he turned 2. My doctor wanted to "wait and see". I wouldn't accept that. I got a 2nd opinion and a referral. He was diagnosed and receiving therapy before his 2nd birthday. At his appointment, she hadn't even read that he was diagnosed and wanted to "keep an eye on his speech." If I hadn't trusted myself, his diagnosis could have been so much later.
Same goes for IEPs, school meetings, therapy. Never feel like you have to give in. Never feel like you don't have a say. Never be afraid to speak up about what you want for your child and what you feel is appropriate. Never let anyone make you feel like you don't know your child best. Most teams are wonderful and receptive to what you have to say, so don't be afraid to speak up. After your child grows, transitions, moves to bigger things, you will be the only consistent person on their team.
If I could go back in time and talk to myself the day we got the diagnosis I would say...
Don't cry. He is going to be amazing. He will go above and beyond what any piece of paper says.
Diagnosis day was tough. I am a special education teacher, so when I was told my own child had a disability, my world was shattered. At that point in time, he was completely nonverbal, had no coping skills, and would often engage in self-harm. At that moment, he was so off in his own world, it seemed like he didn't even know his mom and dad.
He received his diagnosed before age two and started receiving full time intervention right before his second birthday. Along with his normal school programming, he received speech, OT, and PT all within the same program. For the first year, his progress was slow, but obvious. He started to attend to his name and point. He gave single word approximations. His self-harm disappeared. A few months later, he began using Picture Exchange Communication System (PECS). Within a few months of using PECS, he began using words, then two words, then small sentences. After less than a year, he was no longer nonverbal and was able to communicate on his own.
Today, you would never know he was once nonverbal. He tells stories, teases, and delights in amusing everyone he meets. He is so happy and absolutely knows his mom and dad. His frustration can be quickly communicated. He still struggles with social situations, but with practice, he picks up on every skill he needs to be successful.
I was so uncertain what his future would bring. I spent so long feeling bad that I forgot to relax and enjoy my perfect son. I am no longer afraid. Whether he goes to college, goes to a vocational program, or lives with assistance, I know his life will be fulfilling and wonderful. He has showed me that he is capable of anything.
The best thing about parenting a child who struggles is...
He has taught me to appreciate everything he can do. I always hear people saying, "I wish my kid would be quiet once in a while," or, "Why can't they just leave me alone?" It took him so long to find his voice that I appreciate every extravagant story. I appreciate that he knows me, seeks me out, and wants me to hear what he has to say. If it weren't for having a child with a diagnosis, I would have never learned to love all the things most people take for granted.
We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.
Bacon and Juiceboxes: Our Life with Autism (blog on Facebook, an awesome family's autism journey, and they're just awesome people), Chloe Rothschild (can be found on Facebook or online, she's an adult with autism and she does a lot of public speaking, amazing resource for parents and individuals with ASD).
Is there anything else about your journey that you would like to share with other parents?
Every success, no matter how "small" or "minor" is still a success. Every day, good or bad, is an opportunity to learn and grow. And it doesn't matter where you are in your journey, you are their biggest fan and they are yours.
