If you are a parent of a child with special needs, there may be days where you feel all alone in a battle. Perhaps taking care of your child’s needs has become overpowering, in addition to the rest of your family, that you have not taken the break to pursue reassurance from those who trudge along the same roads as you. No matter if you’re raising a child with emotional challenges, or various physical inabilities, we hope you’ll find comfort in today’s post. Deanna “Squeaky” Miller ; wife, singer, and mom, is living the joys and trials of raising a brilliant child that happens to have special needs.
Tell us a little about yourself and your family. When did you first learn that your child/children had a disability and what was your reaction?
Greetings I am Deanna Miller, affectionately known as Squeaky (all about the speaking voice lol). I am an independent artist, singer, songwriter, and performer. I was born and raised in Tallahassee by a wonderful-loving family, who nurtured me into a woman of faith, serving my community with love through music, which is where the singing part comes in. I am married to a beautiful man, Henry for 13 years, and we have three gifted children, Kharizma 20, Julius 11, and Joe’l 10.
Julius is our oldest son and lives with the challenges of Autism. He was diagnosed by the Leon county schools at the age of 5. It was difficult! A year went by before I was able to wrap my mind around the word “autistic”. We didn’t understand how he got this, or how to cure him of it. I remember crying for days, blaming my body, as if I knew exactly how he became this way! We had no clue or real blame! A long road was ahead, we were terrified of not knowing how to help Julius.
In raising a child with special needs, how often do you make time for you? How do you do this? Do you have a support team?
Often….Pouring myself into my music provides a place of peace. I sing a lot around the city, and sharing my voice is me-time. My husband and other two kids are very supportive and will give me a break when I say I need it. They have great relationships with Julius, so it makes it easier for me to get away for a few hours.
Being an at-home mom is hard work and can be very tedious…. I pace myself! If it’s not a priority? I do not worry about it. Julius is in public school, so I get some down time then, and he receives in-home therapy several days per week. I have a great support circle of family and friends, too!
Do you practice therapy at home? What are some activities that you/your family do?
Yes, as I stated in my prior response, Julius receives in-home therapy several days per week. I do remain consistent with some of the exercises daily to help him communicate better, and transition from one activity to the next without difficulties. Music, books, drawings, movies, and games are our main ways of engaging with Julius. He is a cartoonist, with gifted drawing skills and loves to act out animated characters, so you can imagine the level of voice over talent in this family lol.
Therapy is the key point to managing autistic behavior, communication, and socializing. Find what they like and use it to connect with them. The challenges are still there but you learn how to handle them successfully.
What do you do about unexpected behaviors or tantrums? Do you worry that your other children may feel you are unfair to them?
Unfortunately, the disability to communicate every emotion is the most frustrating challenge for an autistic person. Even those whom are verbal may have this challenge. Most will use tantrums to express sadness, anger, and even a disagreement with something or someone. Depending on the situation, Julius will scream and/or speak rude phrases, sometimes attempt to self-inflict harm to his body, with hitting, to express his anger, sadness, or disapproval. BUT because I am well aware of his body language and triggers, I can intervene. Starting with a calm voice, I acknowledge his feeling. This lets him know he’s not being ignored! Then I use deep breathing, while hugging him tight, to calm him. Sensory massages are very effective to help the body relax. While hugging, we discuss the problem. I will ask him to repeat what I say, giving him verbal understanding that what he wants can or cannot happen with explanation. It’s very important to use words that specify time (ex: before, after, first, then) Now, there are times when this does not work, and I have to let him get those feelings out, supervising his physical behavior to make sure he’s not hurting himself, or anyone else.
Our other two children are not on the spectrum, so creating a balance of affection and attention, equally is priority in our home. The way we tackle that task is to do a lot of family time. Group hugs, kisses, discussions, and prayer are some of the things we do. They are very involved with Julius therapy sessions, too! Joe’l plays well with Julius and Kharizma having a background as a CNA helps care for him when we are not around. It’s important to give personal time to them, too! No matter what it is, playing a game of their choice or singing a song with them? We make sure they receive equal amount of attention and love.
One of the biggest hopes for families is that their child will be able to function within society. What are steps that you take to prepare your child for adulthood and independence? (Some parents practice Community Based Instruction)
I’m going to be extra candid with this question lol! A few weeks ago, my daughter and youngest son asked this question, “Who will be responsible for Julius when you and Daddy are no longer able to care for him?” Now, at face-value I told them that they don’t have to worry about that because I’m living to see 90 lol, but I must admit that I have a silent fear of that possibility. I mean, you must trust family and close-friends to stand in your place and continue the life services you’ve provided for your special needs love one, with the unselfishness that comes with it!
Julius is independent to a certain degree. He has hygiene, dressing himself, and self-feeding mastered! But as for the more complicated things, that we know he’s not able to do, the lessons CBI can’t teach him because he’s not comprehending, is what I worry about most! I’ve been researching group homes and other alternatives to have in place for him if and when that time comes.
But at the age of 11 (soon to be 12 next week) Julius has surpassed the goals that have been set for him, so I continue to be hopeful that independence for him is not limited. He’s a very intelligent young man.
What are some heartbreaking choices you’ve had to make as a parent and making sure your child receives the proper support and care?
I will have to say school choice, and not medicating our son. You want to make sure your child isn’t just placed in a daycare setting, where no one is educating him. It was priority for Julius to learn in an environment that can teach him, and unfortunately the school that diagnosed him weren’t equipped to teach him long term. We had to decide to transfer him to a different school. Because we are involved parents, our demands for Julius to get the best care and education was heard. He is presently in a CBI (Community Based Instruction) program, in middle school where the concerns are higher, because he’s among teenagers. I don’t believe any parent can trust the school system 100% to treat their special needs child the way they do. But I thank God for the educators who look out for our son and treats him well. He is liked by his peers and amazes them with his gift of drawing. We have experienced some mishaps, but they were without casualties to Julius. He is a straight A student.
I knew I couldn’t learn my son’s needs if he was on behavioral medication. It was necessary to witness Julius in his organic manner and determine what services will be sufficient. He has never been medicated for his autistic behavior, and to this day we continue to use therapy, and holistic methods of medicine like essential oils and certain foods.
How do you celebrate the small victories?
A “high-five” followed by a song of choice is the norm around here hahaha! Julius loves the simple things, so sometimes we will treat him to the Dollar Store, or he will receive extra television time. We celebrate a lot!!! Every milestone is a big deal!
What are two important things that parents need to hear when they have children with special needs?
- I will quote what has been said to me….” God gave Julius the right parents.”
- “Julius is an intelligent boy!”
Those two things gave me hope in knowing Julius will be just fine
Photo credit: Deanna “Squeaky” Miller
I hope that you found tips and tools in the areas of schooling, balancing the needs of your disabled child and the needs of your other children, coping when your circumstances have become too hard, and encouragement in developing friendships
-Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.
-Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life.
-A person with Autism has:
Difficulty with communication and interaction with other people
Restricted interests and repetitive behaviors
Symptoms that hurt the person’s ability to function properly in school, work, and other areas of life
-While scientists don’t know the exact causes of ASD, research suggests that genes can act together with influences from the environment to affect development in ways that lead to ASD. Although scientists are still trying to understand why some people develop ASD and others don’t, some risk factors include:
Having a sibling with ASD
Having older parents
Having certain genetic conditions—people with conditions such as Down syndrome, fragile X syndrome, and Rett syndrome are more likely than others to have ASD
Very low birth weight
-ASD is reported to occur in all racial, ethnic, and socioeconomic groups.
-ASD is about 4 to 5 times more common among boys than among girls
– Autism is one of the fastest-growing developmental disorders in the U.S.