Local families discuss their special needs

. November 1, 2017.
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As parents, we all want our children to be happy, loved
and accepted. This is especially true for parents with children
that have special needs. Here we’ve compiled stories
of hope and resilience, along with local resources to help you
and your family get the support you need to be the best version of yourself.

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The Trutt Family

Parents’ names: Allison and Thomas
Children: Tyler (9), Katie (7) and Logan (3)
Special needs considerations:
Tyler – Autism
How did you realize that your child had special needs?
At 2 ½ Tyler lost speech and became very physically aggressive.
Where was the first place you went for more information?
The Family Resource Center for play therapy and then Harbor Behavioral Health in Toledo for developmental screening.
What are some ways that your child needs extra help at home and school?
Tyler used to need help with self-care, but now he can do these things himself with reminders. At school, Tyler is on an IEP and receives speech and occupational therapy. He has a shared aide in a typical classroom.
Are there any local organizations that have been helpful?
Special Needs Parent Support Group. Being able to talk to about the joys and challenges reminds you that you’re not alone.
Awakening Minds Art. Tyler can be himself and is accepted with open arms. Last summer we went on a Joni and Friends Retreat in Shawnee, Ohio. It was amazing!
What is something special that you do for yourself/your family to cope when things get difficult?
Take a break to spend quality time together playing games, going on walks and to the park. Something I do for myself is catch up on books that I enjoy!
What’s one piece of advice for other families with a special needs child?
You are not alone. Don’t be scared to reach out for help when you need it.

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The Walter Family

Parents: Matt and Crystal
Children:
Emma (13), Abby (12) and Bella (7)
Special needs considerations:
Bella – Phelan McDermid syndrome and Polymicrogyria
How did you realize that your child had special needs?
Bella stopped breathing 6 hours after she was born and was then flown to Toledo Hospital NICU where our journey began.
Where was the first place you went for more information?
We researched her syndrome online and joined the Phelan McDermid Family Support Group. It’s a rare syndrome so it’s wonderful to connect with families who understand. Bella has acquired other diagnoses that present many medical puzzles so she’s seen at the Complex Care Clinic at Nationwide Children’s Hospital.
What are some ways that your child needs extra help at home and school?
Bella is non ambulatory, non-verbal and very sweet. Bella’s weeks are filled with therapy visits (OT, PT, ST, and vision therapy) from in-home care therapists and school therapists. Thankfully, she loves them all!
Are there any local organizations that have been helpful?
Our family has been particularly grateful for Awakening Minds Art.
What is something special that you do for yourself/your family to cope when things get difficult?
We try very hard to make Bella’s life full of love and fun.
What’s one piece of advice for other families with a special needs child?
It is very easy to become focused on the things that your child can’t do and become stressed about reaching goals. This is a trap I fell into for a couple of years. Now my focus is different; my goals are smiles, giggles, snuggles and eye contact. We are meeting and exceeding our goals!

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The Hannah/Yoder Family

Parents: Aubrey and Jeremy Yoder, Nick Hannah
Children: Rylee Hannah (10)
Special needs considerations:
CDKL5 – a genetic disorder affecting fewer than 2000 people worldwide, Epilepsy, Severe Sleep Apnea
How did you realize that your child had special needs?
We realized when she was around 9 months old. Then we spent years doing testing only to be told that she was normal. Finally, at age four, her preschool teacher went above and beyond to research Rylee’s behaviors and came across CDKL5.
Where did you go for more information?
The Cleveland Clinic. A blood test confirmed it. She finally had a diagnosis, however, there’s no cure and it becomes more and more life-threatening to many children.
What are some ways that your child needs extra
help at home and school?
Rylee cannot walk, talk, stand or do anything without constant care and supervision. She uses a wheelchair and recently began using a communication device known as a Tobii Eye Gaze. We’re confident that it will be a game changer.
What local organizations have been helpful?
Rylee’s a bubbly, active, social little girl who loves the Gliding Stars Adaptive Ice Skating Program and Miracle League Baseball.
What is something special that you do for yourself/your family to cope when things get difficult?
We strive to help families just learning their diagnosis or who may have a hard time finding the silver lining in raising a medically fragile child. Some days are better than others, but we’ll never give up. We’ll never stop spreading awareness and hoping for a cure, and being an advocate for Rylee as well as for other families in need.
What’s one piece of advice for other families
with a special needs child?
Live above the diagnosis. Do not let it define your family.

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The Smith/Rice Family

Parents’ names: Sarah Smith & Will Rice (Engaged to
be married next year)
Children: Noah (12), Brady (9) and Ginger (6)
Special needs considerations:
Noah- Anxiety, Autism Spectrum Disorder, Sensory Processing Disorder, Obsessive Compulsive Disorder, Attention-Deficit/Hyperactivity Disorder, Lupus, Platelet Function Disorder
How did you realize that your child had special needs?
Noah developed normally until 18 months old but then regressed.
Where was the first place you went for more information?
His pediatrician. It took several months of testing and traveling before we got a diagnosis.
What are some ways that your child needs
extra help at home and school?
Noah is on an intense IEP in a self-contained classroom with peers typical to his needs. We stay on a strict routine everyday even during the summer. Getting off routine causes major meltdowns
Are there any local organizations that have been helpful?
Special Needs Parent Support is a great resource! Antonia Faisant is amazing and offers so much advice. It’s nice to know there are resources for parents in times of need!
What is something special that you do for yourself/your family to cope when things get difficult?
When things get hard we walk away. If Noah gets frustrated, we stop for a second, take a walk, then start over again. Noah loves to swim, so as a reward for good behavior for the week, we go swimming!
What’s one piece of advice for other families
with a special needs child?
It’s okay to cry!! I promise.