When you hear the diagnosis of Autism applied to your child, your whole world changes. At first you think that only your life has changed but that is not true. Your whole family dynamic changes and that includes the grandparents as well.
“It’s not what you thought your life would be like,” says Kathleen Patrick. Patrick is vice president of services for Easter Seals New Jersey. Her son, Adam Martin, 11, has an autism spectrum disorder known as pervasive developmental disorder — not otherwise specified (PDD-NOS). Her other son, Mark Martin, 9, is developing typically.
It’s not horrible, just different, Kingsley writes. She suggests that if you spend your life mourning the lost trip to Italy you will never enjoy the special qualities of Holland. After you’re there a bit, she says, you notice the charm –tulips, windmills, Rembrandts.
Whether the child with autism is the first-born, in the middle, or the baby, parents often worry about the effect that dealing with the autism — and the time commitment it involves — will have on the other children. “I think most parents bend over backward so it doesn’t affect the other children,” says McCarton.
In a recent study published in the Journal of Autism and Developmental Disorders,researchers compared siblings of autistic children with siblings of non-disabled children and found those with the autistic sibling were actually better adjusted psychosocially and emotionally. They did find, however, that it’s more difficult for the non-disabled child to cope with the autistic sibling if multiple risk factors such as low income are present.
Exactly why the siblings of autistic children scored better isn’t known. Wright says they may have a higher level of maturity from observing and being involved in the care of a child with autism. “The message is,” Wright tells WebMD, “lots of siblings are doing OK.”
Dealing with a diagnosis of autism puts a strain on any marriage. Men and women tend to react to the news differently, according to McCarton, and that can add to the stress.
“Women are profoundly sad. But they hit the ground running,” McCarton says, referring to the typical reaction women have on hearing the diagnosis. “They mobilize. Men often retreat into work.” Also, men often question the diagnosis or deny it.
This is what happened in our family. We had a lot to overcome.
The solution is to make time for each other, which is more easily said than done. Families are already time-strapped dealing with behavioral therapists, many doctor appointments, and above-average financial stress. Even so, experts say, couples have to feed the relationship — even if it’s watching a video together or talking after the kids are asleep.
It is kinda hard to find any time for each other but you must. Our Sarah only required 3 hours of sleep a night, so sleep for me was almost nonexistent. The only time Robert and I had anytime together in the early years was when respite or my mom would babysit. Most of the time it would be my mom, because the people at respite that would babysit would only do it once LOL.
It’s also crucial to steal solo time just for yourself, McCarton tells parents. She asks them: “What were the things you loved before?” When parents protest they have no time or money to indulge themselves, she says: “It doesn’t have to be expensive or take up hours of the day. It can be going to Starbucks and having a cup of coffee by yourself for half an hour. It can be taking a shower for 15 minutes.”
In our family the only alone time I had was when I was in the bathroom. I loved my showers and baths. They did not last long, but they were very much appreciated.
Many people deal with those challenges by opting out, according McCarton, which, she says, is a mistake. She says it’s important to think through what can be done to make the child with autism — who can become extremely upset by changes in routine that come with vacations — more comfortable on a trip.
We traveled a lot, always looking for a better place to live where all of our kids would get the best education and living atmosphere we could find. We were the family that seem to think the grass is always better on the other side. Sarah actually come to like the traveling and she learned to accept different types of people with know judgement. In other words she became a little more flexible.
With more awareness about autism and what it is, parents may expect friends and acquaintances to be accommodating to their autistic child’s needs. Maybe not, says Wright. “People are more aware, but I am not sure they know what to do or how to support” families dealing with it, she says.
Even with the awareness, people can stare when a child with autism displays what they consider odd behavior. “You get to the point where you get a thick skin,” Senator says. “You don’t care if people are staring at your kid.”
I personally never got to the point of having thick skin. I have however had a few confrontations and lost a few friends. My attitude was that if you didn’t accept my child you did not accept me. Maybe I did get a little thicker skin, but not much.
You learn, she says, to take control — even if you don’t feel so in control.
Letting go of that image of what the “ideal” family is can help
“Let yourself go with that and not worry about being a Hallmark card. Nat has taught me to be less uptight about those kinds of things. You can find enjoyment in odd places with these kids.”
Above all else always remember there is the God factor!
Spiritual life can be an important aspect of overall quality of life – for individuals with autism and the families who support them. Dealing with a disability does not reduce the need for a spiritual life. For some, in fact, the role of faith increases significantly when overwhelmed by the challenges a disability can bring to one’s life or family. A faith community is a cornerstone for spiritual support, and more critical support at a time of crisis. But these communities offer so much more than just support, as they are also a social network hosting activities and events for education, entertainment and relaxation. Additionally, a variety of ministries and volunteer options typically invite members to contribute their time and talents to give back to the community in a meaningful way. Families dealing with autism and developmental disabilities may struggle to feel welcome in these communities, accentuating the already existing feeling of isolation from the community at large. http://www.autism-society.org/living-with-autism/family-issues/autism-and-faith.html
- New blood test hopes to diagnose Autism early (onlineathens.com)
- Community Issue: Autism and the Search for Avonte (jeromeblogs.wordpress.com)
- Autistic Children Appear Less Friendly To Peers: Could Poor Facial Expressivity Lead To Being Bullied? (medicaldaily.com)
- Autism… Shedding Some Light On An Important Issue…. (theadventuresofprincesssophia.wordpress.com)
- Letting Our Autistic Kids Have Chill Time (squidalicious.com)
- Autism may have many ‘lost girls’ (abc.net.au)
- “It’s not personal; it’s just business” (jacksb81.wordpress.com)
- UNC child neurologist finds potential route to better treatments for Fragile X, autism. (zedie.wordpress.com)