How we do it: Parent-to-parent advice on raising kids with special needs

Connecting with other parents

by Patty O’Machel

As the parent of a child with a physical handicap, some days are amazing. I feel truly blessed to share my life with this child who has boundless strength and happiness, and I am more than thankful that I am healthy and strong enough to help her. Other days are a struggle from beginning to end, and the self-pity and fear are palpable. But I am lucky enough to have a tremendously supportive circle of friends. Some of them have special needs kids of their own and they ‘get it.’ Others don’t share the special needs thing but are still there with me and my family to celebrate the small achievements and listen when I cry. Along with my amazing family, these friends are what get me through. I am by nature a friendly person, and I have found that by talking to other parents, whether it is at work or when I am sitting outside of endless hours of therapy, I have gotten the most important information regarding my daughter. I have found out about different therapies out there to keep things interesting (gymnastics, swimming, hippo therapy) and about grants and equipment I didn’t know existed. Other parents are the ones with the information, and they are willing to share it with you if you strike up a conversation and ask. We all have the need to connect with people like us, and if you look around your daily life, you are surrounded by them.

Eating out

by Lydia Stux

Eating out is one pleasure I would not forgo when we adopted the twins a dozen years ago. I have found that other diners do not care to be involved in a social experiment and prefer that families with autistic children just stay home for the next 20 years. The onus is on us parents to make the trip successful. My tips:

  • Go early so the restaurant is not too crowded and the staff is not frazzled. But not too early, when there might be a single waiter for the whole place. Never go anywhere that requires a wait for a table.
  • Avoid eateries that cater to families with children. The food is awful and there are lots of children whose behavior is not a good model for yours.
  • Avoid places that are so quiet you can hear glasses and silverware clink, but avoid loud restaurants or ones with piped-in music. It’s unpleasant and over-stimulating for autistic and hyperactive children; they can’t tune it out.
  • Order ahead. Restaurants love quick turnover for their tables. Call your order in, sit down, eat and leave.
  • n Request a booth, if possible, off the main traffic route. I have learned the hard way not to sit too close to senior citizens, in the main area or near the entrance. I do not relish being entertainment for the entire restaurant!
  • Bring engaging activities: pad and crayons, music, small toys. Play ‘I Spy’ while you wait.
  • n Remind children about expected behavior. Our family’s rules are: ‘inside voice only’ and ‘stay in your seat.’ If I give more than one warning for each, we leave.
  • Let other adults at the table know to decide immediately what they want, so they can order the first time the server approaches. If someone needs ‘another minute, please,’ they will be sorry and so will your child. Also, you may never see your waiter again.
  • Tip the staff well.

Living in the moment

by Julie de Lara

The fact that Michael has a chronic illness with an unpredictable course is stressful for Michael and the rest of the family. We are so often transported to the emergency room that we know many of the ER staff and the paramedics.

So we live in the good moments, put the bad ones behind us as quickly as possible and try not to worry too much about a future we can’t control. Every night before our children go to bed, we hug them and tell them we love them and how proud of them we are.

We resist the urge to measure either of our children against other kids or each other but appreciate the progress they make as individuals. We are teaching them that what is ‘equitable’ is not always ‘equal,’ and while they may not always get the same things, we will try to give each of them what they need.

Looking to the future

by Debra Vines, The Answer Inc.

I thought that May 21, 2009, would be one of the happiest days of my life, but when I think about the reality, I cry. My son Jason, 21, graduated from high school. He beamed in his bright blue cap and gown.

My husband, family and friends beamed with happiness and were very proud, but I cried, not from the joy of the graduation but asking myself the question, “What is going to happen with my son now?

For those who cannot enter the workforce, continue on to more education or find sheltered workshop environment with adequate staffing, there are few options. Far too few programs and resources are allocated for adults with autism.

Most of the national focus has been on early intervention and treatment of people with autism. Young adults like my Jason have fallen through the cracks. Jason has improved throughout the years and our primary focus right now is not a cure but a treatment for the rest of his life.

It becomes more challenging as our children with autism become adults because the community has very little empathy or sympathy.

As I cry for Jason, the tears of many flow throughout our communities because there is a baby boom of Jasons aging out of school.

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