We have a new Featured Parent to introduce you to! Toni is a parent to a child with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Toni Tenters: Toni Tenters and my son, Clayton, age 9.
FF: What is the nature of their special needs?
TT: Clayton's primary diagnosis is Autism; however he has an array of other diagnoses including ADHD, mild to severe cognitive delays, sensory processing disorder, and an array of gastrointestinal issues.
FF: What would you say is your biggest challenge in raising a child with special needs?
TT: The biggest challenge we have faced so far is understanding all the information, tests, protocols, treatments, therapies, and terminology given during the process. Also - not receiving similar recommendations from the varying providers involved.
We started trying to get answers/assistance for Clayton when he was around the age of 3 1/2. It took nearly two years, along with an array of doctors, specialists, psychologists, and countless tests before Autism was finally discussed. We were looking for treatment options that did not include any controlled substance prescriptions, more alternative type treatments and therapies. However, due to some medical issues, we had to continue with traditional doctors as well. To date, I do not think we have had any two providers agree on recommendations for treatment/therapy. The medical community recommends medications, while the alternate providers (such as DAN doctors) recommend bio-medical interventions. And, in our case, where we are still seeing both types of providers, they tend to make comments about things we are doing that that they didn't recommend. That part is the most difficult.
As a parent, you are already overwhelmed with emotion and want so desperately to help your child... at the very least, you would hope that two providers would have similar recommendations. We have had to do a ton of research on our own, purchased just about every book there is related to Autism, and just really taken all the information from the varying sources (including the doctors) and decided on our own which treatments/therapies to pursue with our son. We do find that we often second guess ourselves. It really is a trial and error method. Not every treatment works for every child. As parents, we know our children better than anyone else. I have learned to trust myself and to go with my gut feeling.
FF: What would you say is your greatest joy in raising your child?
TT: The greatest joy has been watching our son progress over the years. We are very blessed that over the past five years he has come out of his own world and really taken a passion to loving life - he just has so much shared joy! He makes wonderful eye contact, is able to fully communicate, loves to give/receive affection, and has the most absolute passion for learning new things every day. He is always laughing and has a big smile on his face (except the occasional meltdowns, which yes, we still have.) And, his eyes just light up the room! He has overcome so many obstacles in his life, and he just takes them one by one and seems to be conquering them all! Don't get me wrong, we still have a long journey ahead of us. But we have no doubt that he will continue to shine and move towards reaching his dreams.
FF: What would you say has been the biggest help to you in raising your kids?
TT: Honestly, the biggest help I received was the opportunity to attend the SonRise start-up program. At this program, we were surrounded by such an amazing staff that truly cared about us and our children. All the parents there were going through the same things as my family and we completely understood each other. We all bonded immediately! Just to have that type of support was amazing.
Over the course of the week-long program, the staff guided us through the process of learning to completely accept our children for who they were right at that moment, and how to fully love them, even if they never made any progress. I loved my son, but did not realize that I was not truly fully accepting my child as he was right then and how that was affecting me, my family, and most importantly my son. Once I worked through the process and was able to love him fully, and accept him fully, I just had a completely different attitude about everything. It all began to come together. We also learned how to run a child-centered, loving, non-judgmental intensive autism program in our homes. The methods they taught us have been priceless.
FF: Give us one tool you would hate to live without.
TT: The tools/methods I learned during my start-up training. I still use the methods today and often refer back to the array of resources they provided.
FF: If you could give one piece of advice to another parent who's child has just been diagnosed, what would it be?
TT: I know the diagnosis can be overwhelming, but don't panic! The diagnosis may just open up doors to services your child needs. Listen to what the doctor is telling you, take notes, but then take time to think about everything, write down your questions, and ask them. If you don't understand, ask again! Also, reach out to other parents who have been there. We can tell you about our journey, what worked for us, what didn't work, etc. In the end, no one knows your child better than you do. Become your child's best advocate. This journey is a constant learning experience for all of us. Every day is different, every child is different, and Autism looks different for every family. Most importantly, don't give up. The diagnosis is not the end, it's just the beginning of the journey.
Toni, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!