There are few “jobs” in this world as difficult — and as rewarding — as being a parent. Life and destiny hand you a small human and an unpredictable 18 to 85 years, God willing, to create a kind person and to lay down the foundation for a future that is full of potential and kindness and joy. That in itself is ridiculously challenging and can be incredibly lonely. Factor in a child with special needs and you can feel absolutely alone. I love the idea of supporting other parents and offering a sense of community for those of us who face battles daily and mostly behind the scenes. 

Through this new series, “Special Edition”, I’m going to introduce you to some of the most incredible parents who are raising kiddos with a little extra something — an extra chromosome, perhaps, or an extra diagnosis; maybe it’s an extra health concern or an extra behavioral setback. These mommas (and dads, too!) are fierce, strong, resilient and willing to give their all and then some. I hope you learn a little bit about them and their  children; it is my wish that your eyes are opened and your hearts are warmed. I hope that if you too are facing challenges and difficulties in your everyday life as a parent, that for one brief moment while reading this, you no longer feel alone. 

Tell us about you and your family!

Scott- dad 

Amylynn-mom

Bailey- 21

Micah- 19

Madeline- 16

Ethan- 14

Jacob- 8

Oliver- 1

Who are you specifically talking about today? 

My son, Micah.

Tell us about him! 

Micah is a 19-year-old boy. He graduated high school in 2019 and attended vocational tech training school for culinary classes his senior year. He loves to read, but it is a reward we had to work very hard for. I had to pull him out and homeschool him for 3rd and 4th grade because brick-and-mortar school just kept pushing him through the grades, even though he couldn’t read only a few words. He also struggled with writing, and still does because he lacks creative thoughts, and tends to forget what he’s writing before he gets to the end of the sentence.  Micah excels at math. He loves that it has concrete rules, and thinks of it in ways I never could have thought of.

 He has never really had many hobbies. He never liked playing with action figures, trains, etc…when he was younger. He would play/look/collect Pokémon cards and Bey blades. He often would participate in arts and crafts if he could copy something, but lacked any creative or imaginative play.

 He played soccer from 4 years old until 13. Again, he loved the concrete rules of the game, and is naturally built lean and fast. Unfortunately, middle school soccer was much more mentally and socially demanding, so he finished the year out but refused to participate the following year. He also tried t-ball when he was little but it seemed to frustrate him.

Micah is a pessimist, and always has been. We tried dozens of techniques and even punishments to stop it. This is his biggest life-hindering  problem. He seldom has anything positive to say. It affects his daily life and even his plans for future.

He struggles with changes in routine. It causes a moody, panic in him that last hours. He has to find routine in things to function, so a job with repetitive patterns are key for him.

 He struggles socially, even after 11 years of therapy. He does much better than when we started, but it is still something he struggles with every time he’s in a social situation. Some people just think he’s a jerk, but he just states matter of fact statements at inopportune times. His tone of voice plays a large role in this too. He has a sarcastic tone even though he can not hear it. It is something that affects his life regularly, too.

What diagnosis(es) do/does your loved one have? At what age did he/she get diagnosed with this? Would you say this is a visible or “invisible” diagnosis and do you think that makes things more difficult in any way?

Micah has Asperger’s syndrome, ADHD (that is his label even though he doesn’t have the hyperactive part)  and Crohn’s disease. 

(Age 3) Asperger’s is a “mild” higher-functioning form of Autism. He is verbal and attended most mainstream classes at school. At first meet,  you may think he’s “normal.”

(Age 5) ADHD affects his ability to focus and stay on task

(Age 8) Crohns is an autoimmune disease. It is his own body attacking the lining of his intestines. It has caused him many long hospital stays and is painful daily.

What was your initial reaction to this diagnosis? What was your greatest fear? For older children, was receiving a diagnosis/ getting answers a relief in any way?

I didn’t believe he had  Asperger’s and took him to get a blind second opinion.

 I was afraid of what would happen to him in school. (Bullying) Then when he was 10 I watched the movie “Mozart and the Whale” and I cried because I had never thought of what life would be like for him as an adult. 

 When he was diagnosed with ADD (now labeled as ADHD) I wasn’t surprised. I knew there was something but I couldn’t put my finger on it!

How does this diagnosis affect everyday life for this child? What are their greatest struggles?

1) He wants friends, but just can’t connect with people. 

2) Most people think he’s weird or a jerk. They fail to realize he has a disability so they are very mean to him.

3) Like above… he’s a pessimist. He gives up so easily and does even try other times.

4) Crohn’s has limited his ability to do many things. He hardly eats and is dangerously skinny. Until we put him on the medication Humira at age 12, he hadn’t grown in height or weight in 5 years. 

What do you think is the biggest misconception with your child’s diagnosis? 

 That he is “normal” and a jerk. 

Does your child have any other siblings? How much do they know about his/her diagnosis? How, if at all, has it affected them? What impact do you think it will have on them longterm?

He has four brothers and one sister. Yes, they have been taught to be patient and understand his differences. But it is challenging for them. I have always spent extra time with him due to homeschooling, hospital stays, even “simple” things like teaching him how to shower has taken more time than with the other kids. Our routines and schedules have always been affected by him. 

It has good and bad impacts. It teaches/taught them to be more understanding of others’ differences. However it has shown them that life isn’t always easy or fair.

What does an average day look like for you and your child? 

He is currently living with his big brother!

What areas are the hardest — everyday functions, education, employment, behavior, etc — and why?

Making his “own” schedule and sticking to it.

His “attitude” affects his employment and friendships.

How has your life/ your parenting changed because of this journey? 

I’ve become stronger in so many ways. I learned I could teach, to fight for my children, to not listen to doctors when my mommy instinct says opposite. To never let anyone say they know my child better than me. 

My husband doesn’t help with any of it. He considers it my job, and doesn’t help with any decisions.

What is your greatest wish you have for your child? 

To get a stable job, home of his own and having good meaningful relationships.

Please note: We are not medical professionals or scientific experts. We are providing a human-based glimpse into daily life with certain diagnoses. For more information, please seek a professional affiliated with this condition.

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See more Special Editions here!