Autism And The Stigma Around Group Home Placement
When my daughter was younger I always thought she'd live with me forever if need be. I honestly had no clue of the journey that was ahead of us. As a parent raising a child on the Autism spectrum you hope that you're going to find the answers to each difficulty that may arise. This is the farthest thing from the truth. We all learn as we go - asking questions, researching information, and maybe feeling like we're drowning in all of the uncertainty.
When you raise a child on the autism spectrum, or with significant mental or physical delays your role becomes a parent, caregiver, therapist, doctor, teacher, and more. In my own experience, I learned what my daughter needed and tried to provide it to her.
Due to her significant delays, I had to work with her day after day in an effort to reaching milestones that come so easy to others. Due to seizures and behavior issues, she had to start on medication, of which always seemed to be trial and error. Sleep patterns are different for those on the spectrum, and there was a multitude of sleepless nights. Not only is routine a necessity, but so is having the exact cup, movie, toy or snack that will ease their anxiousness.
Forget about going anywhere without a plan B, a plan C, or a plan D for that matter. As long as I'd prepare her for what to expect, I learned over time just how much she could handle on outings. Self-care skills may be difficult for these children well beyond the age that most are taking care of showers, teeth brushing, dressing, and preparing a small snack on their own. Your life literally revolves around routine and trying to hold onto your sanity after you've heard the same movie for the 100th time.
There are varying degrees of Autism, and regardless of whether there may or may not be an additional diagnosis, each child will learn, grow, and develop life skills differently. While the symptoms of autism are alike, not all children will have each symptom. Let's read the details on Web MD in order to understand Autism better. Also, see my previous story titled Holding On To A Job While Raising A Child On The Spectrum.
The Stigma and Public Perception of Autism Group Home Placement
As each child reaches adulthood typical children that some will need more assistance throughout life than others. Most typical children leave home by age 18, where those with special needs will either stay at home with parenta, or be approved for placement in a group home. There's little help, such as respite care, which makes it difficult for parents to get any kind of break from daily caregiving. Not to mention if there are siblings, it can become a struggle to focus on them.
Let me also add how behavior issues can be scary as your child grows older and their strength increases. Unfortunately, there seems to be quite a bit of stigma circling around about group home placement among peers, other parents, relatives, and friends. I placed my daughter on the Medwaiver in FL early on for services, and sadly the wait list is much too long. There are a barrage of hoops to jump through, and you'll feel like you're crossing Ts and dotting Is for a long time while trying to prove placement is needed.
Once placement is done you must be on your toes, watching for anything you would not want to see. Nobody can care for your child better than you, but we all need our independence at some point. If you find the right placement you will surely see that after the initial shock and separation anxiety that they will enjoy their independence.
Not all group homes are a facility. Many are regular houses, where there are roommates and staff available to assist with the caregiving routine. Each state differs but unfortunately there's not as much assistance out there as is needed. Find out what programs may be available in your state so when the time comes you will have known which steps to take. Parent Center Hub shares some valuable information on the subject.
Tough Decisions Parents of Autistic Children Must Make
Every family has to make decisions based on what is best for them. No two families are alike.
It's clear that we always want to make choices that will allow our children to grow, not only physically, but developmentally, mentally, and emotionally as well. While parenting can prove to be tiresome, caregiving is exhausting. Here at Autism Society, we learn a bit more about the importance of the caregiver role, and what can be helpful for everyone's success. It was the hardest decisions of my life, and yet I see how happy my daughter is, how independent she's become, and I know that I made the right decision for her. Sometimes caregiving means letting go.