Hello! I am a former teacher turned stay at home mom to three boys (just turned 5 , just turned 3 and almost 11 months). My oldest son, L, has Childhood Apraxia of Speech, sensory processing disorder and a delay in communication skills, adaptive skills, and fine motor skills. He is sweet, curious, active, and very determined to figure out how everything works. My middle son, S, is more of a book lover who enjoys dirt and making pretend food. The baby, O, is silly, cuddly, and always wanting to do what his brothers are doing. We have a wonderful home filled with cats, kids, books, messes and love. My husband loves his sons so much and works very hard to support us all.
Miggy: Welcome Tenille and thank you so much for being here today. You have 3 boys with your oldest having special needs. Let’s start at the beginning, when did you first start to notice red flags with L and how long from those first red flags until an actual diagnosis? Do you remember how you felt when you finally got a diagnosis? Can you compare those first thoughts and feelings with how you feel now?
Tenille: L was always a bit of a difficult baby, he took longer to soothe and really needed us to stick to a routine. When he was 18 months old we really noticed that he was not talking (he only said mama). We made a referral for early intervention and he qualified for speech only. Fast forward to this past November, L had been in speech continuously and was also in a private preschool twice a week but I still felt that he was not making the progress he should in speech and that he had more going on than just a speech disorder. We then had a private speech eval and her report confirmed Childhood Apraxia of Speech, which is a neurological speech disorder. Basically his brain and mouth don't work well together to allow him to produce intelligible speech. He knows what he wants to say but has a hard time saying it. She also agreed with me that there were more issues at work and so I asked the school district to do a full evaluation of L. By January of this year we found out that he has severe sensory processing disorder and a delay in communication, fine motor skills, and adaptive skills.
When the evaluator shared the diagnosis I remember feeling relieved. Finally, I knew what was causing so much difficulty for my son and now we could get more help. It also made me feel better because L always struggled with behavior and I knew school would be a challenge with all of his issue but now he would be getting help. I think I have always known there were sensory issues with my son and after having two more children it was even more obvious that his struggles were so different than his brothers'.
Miggy: Explain how L’s needs affect your day-to-day life?
Tenille: L has multiple speech therapy sessions a week and we now have OT too. Plus he attends preschool twice a week (half days). So a big part of our routine revolves around getting him to these services. But in a smaller way much of our day revolves around making sure he has had enough of the type of sensory activities he needs to stay regulated as well as working on speech activities. L can be super helpful and calm and enjoyable around the house and even out in public much of the time now. But I always have to be on the look out for signs that he is becoming overstimulated or overwhelmed. When he is, he can meltdown but often he just becomes super active and physically out of control or he runs. It can be tough to manage all of that plus caring for my two other boys and the normal household stuff. But L and I are learning more and more each day to manage his needs and still have time for things like parks and playgroups and camping.
Miggy: What are the biggest worries you face for your son? Conversely, what are your hopes and dreams for your son?
Tenille: I worry that he will always struggle to be understood by others and that it will isolate him and cause depression and anxiety. As a former teacher I worry so much about what school will be like for him. I worry that he could hate learning and come to feel that he is a "bad boy" because he doesn't fit the mold of the ideal student.
I just want him to be proud of himself and the things he excels at. I want him to be a kind person who helps make the world a better place and who feels a sense of accomplishment in what he does.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Tenille: Most of our silly situations come from the fact that we have three boys and are not always directly related to my L's special needs. But there have been times that his speech disorder makes for interesting conversations. One time in particular, all the grandparents were at our house and L was telling us a story about something that none of us could understand. He kept repeating a word that sounded like ants but we could not figure out what he meant or why he would be talking about ants. Finally he got onto the floor and started crawling around and we realized he was, indeed, talking about ants. He was trying to tell us he saw ants in the kitchen. L has gotten pretty good at charades!
Miggy: How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Tenille: L's special needs are not super obvious but he does have a hard time communicating with other kids at parks and such. He also can make spitting sounds and play chase too much because he is not sure how to play with others. I just hope that kids will come tell me if they don't like what he is doing so we can talk to them about his differences and so L can learn better ways to play. Mostly I just hope parents talk to their kids about how different everyone can be and yet still have fun together. Also I really hope more and more people are aware that most kids are not trying to be bad or lack discipline. So many kids have other needs and issues that people may not know about. Kindness can go a long way.
Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?
Tenille: I would say that it’s OK to go bath and forth between feeling overwhelmed and scared and then hopeful and determined. That its OK to read all you can and do all you can and then to sometimes take a step back and just be a mom, not a therapist. And most of all I would have told myself that having more kids would seem crazy but was really the best decision ever!
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Tenille: I have learned to be more understanding and less judgmental. As a teacher I thought I knew so much about kids, but being a mom, especially to a special needs kid, has really taught me that there is no one right way, there are hundreds of ways to make things work and that each family, each day, each situation might need something different. Mostly I have learned that kindness is the best thing anyone can give, to themselves and to others.
I love that you talked about kindness so much Tenille. There have been some very sad stories in the news lately where parents attack other parents for not doing a "better job" or not "watching their kids close enough" and if there's anything I've learned over the years it's that none of us are ever in a position to judge. You really just never know. And even with much more benign issues like behavior and tantrums we are so much better off giving smiles and words of encouragement rather than judgmental stares or shaking heads. And yes I too hope that more and more parents will take the opportunity to talk to their kid about how we're all different. I know these conversations won't completely alleviate curious questions and stares from young children, but it sure helps to have those conversations early! Thanks so much for sharing your journey and your sweet son L with us today. Best of luck to your sweet family.
As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. Have a fantastic weekend!