I think we can all agree that parenting is one of the toughest jobs in the world.
But what if you have a child with special needs? The going gets tougher, y’all.
Down Syndrome, Autism, ADHD, physical disabilities, or chronic illnesses come along and lay down a lifetime of unique challenges for some parents. It’s a big job that requires grit, nerves of steel, an ironclad support system–and lots of love.
I spoke to a Mom of a special needs kid for her perspective. Hopefully gaining a glimpse into her world can help us all have a little more compassion and understanding.
Here’s what she had to say…
When you are a parent with a special needs child of any kind, a lot more extra time and energy goes into your child’s care than you could imagine. The days grow long.
But one of the main reasons we put so much effort in, I think, is an important one—opening as many doors to self-sufficiency as possible for your little one.
We want to see our children be as independent as possible once they are adults. And we work really hard to reach that goal. Some of us know our children will be with us our whole lives, but we want them to be able to care for themselves as much as possible. Because even though life as a parent is tough, we know theirs is even more challenging. Why not give them as many tools as possible for success?
The list is never ending it seems, but here are just a few of the special things we do to equip our kiddos to live the most independent life possible:
- Occupational Therapy for physically handicapped children
- ABA for autism
- Speech Therapy
- Finding a good school that fits our unique needs
- Meetings, phone calls, or emails with teachers
- The ever-changing IEP’s (Individual Education Plan)
- Doctor’s Appointments
- And the list goes on…
It’s a grueling routine, but it doesn’t stop there.
Strict schedules for home care also mean extra time spent planning and implementing for the best day possible. Sometimes you burn the wick at both ends to be prepared. But the unexpected does happen.
- Meltdowns at home or school
- Challenging behavior that makes you want to pull your hair out.
- Extra messes to clean up
- Toileting issues
- Diaper duty for older kids who can’t go to the bathroom themselves
- Unexpected health issues that come with certain disorders, not to mention mounting medical expenses and the stress that comes with them.
Being a special needs parents means personal challenges for parents
It’s a lot of work giving a child around-the-clock care because of a disorder or disability. Unfortunately, burnout factor is high among many parents of special needs children.
- Isolation – Sometimes we just feel alone. It feels like no one around us can really understand our struggles. Even close family and friends don’t seem to get it sometimes. Many times, stares from strangers in public cut daggers and push us further into the dark. One helpful tip to stave off isolation? Support groups. They can be a life-saver.
- Depression – Because of the isolation that comes with the territory, depression is common. The long days and the solitary task take their toll–day in and day out. Sadly, some of the depression comes from living a life of quiet regret and mourning.It sounds terrible, but it’s true. Some of us grieve that we didn’t end up with a child who will be able to live out their dreams like a “normal” kid. It’s hard to overcome at times. Depression can be serious, and parents of special needs children still have to function. So seeking help or therapy is advised. A parent who takes care of their own needs is better equipped to handle the rigor of special needs parenting.
- Stress and anxiety – A special needs parent expels a lot of energy just preparing for the unexpected. Stress levels are high as a result. Anxiety and panic feed on the unknown, which is inherent in this way of life. Learning ways to cope with the stress in healthy ways will make a difference in day to day life.
It’s all worth it, though…
Once your kid hits an incredible milestone–whether it is finally being potty trained, saying a first sentence, or tying their shoes the first time–the rewards are MORE than incredible. Our hearts sing with joy and fulfillment. Raising children with extra needs may be incredibly stressful and taxing, but the rewards make it all so worth it. Because even though the work is hard and the days are long, these kids are simply amazing.
Parents of special needs children need all the understanding, love, and encouragement we can give them. Kudos to all of you out there doing fantastic things to give your kids the best life possible.
Hey, other parents of special needs kids chime in because your voice is important. Did we leave anything out? What else could you add? Leave a comment below. And don’t forget to share with your friends. Because sharing is caring.