The social network for parents of kids with autism

“After my son was diagnosed with autism, we felt alone.  We had no idea what to do, or who to turn to.  Our friends couldn’t really help us.  We felt isolated, like we were re-inventing the wheel.”

While this quote is from the mother of a six-year old boy diagnosed with autism three years ago, it could have come from any parent of a child with special needs.  Feelings of isolation often start with the diagnosis.  Family and friends on Facebook may want to help, but usually do not have the foggiest idea what it truly means to have a child with autism, ADHD, Down’s Syndrome, or any other special need.  What’s more, they may even offer unhelpful advice or judgments that further isolate an already stressed out parent.

Isolation forces don’t let up after diagnosis. They resurface as parents try to…

  • Get their child into early intervention
  • Negotiate an IEP with the school
  • Fight for coverage with insurance companies
  • Explain outbursts at school
  • Explain absences from work while they tend to their child
  • Educate other parents about autism
  • Try to help their child make friends
  • Help a child stand up to bullying
  • Try to nurture a marriage
  • Manage the transition to adulthood

It’s not unusual for parents confronting these challenges to feel like it’s “them against the world.” It’s one of the reasons mothers of children with autism have stress levels that rival that of combat soldiers.

So what’s a parent of a special needs child to do?  How can you fend off these isolating forces and maintain your mental and physical health through the years? Below is the advice of several parents of children with autism who have figured out ways to overcome – or at least keep at bay – those feelings of isolation.

Solutions

1. Reach out – Don’t Go It Alone

  •  “You need to find the emotional support in your [special needs] community – online or locally,” explains Kristina Matthiesen, mother of a 6 year old boy with autism.  “When you have a child that isn’t acting in a socially normal way – it can be even harder to put yourself out there, but you need to reach out and connect with other parents who know what you are going through.” Kristina searched for other parents near her online on MyAutismTeam and through her local mothers’ club website.  AIMES, a mother in Camas, WA adds, “Join local support networks. It helps to know you’re not alone. Network through any social media you can to find the best programs and fit for your child.”
  • Just the process of reading someone else’s story is comforting and therapeutic.  “Finding someone who is going through the same thing as my family (even if their situation is more or less severe) is so helpful.  [It helps] to know that I am not alone with what I face on a daily basis.”

2. Preserve Your Marriage or Relationship with an S.O.

  • “Parenting a child with special needs can be draining and taxing on a relationship,” explains Sharon Esch of Albuquerque, NM. “Trying to remember that our marriage is important and showing appreciation and affection for each other had really been put on the backburner for a while.  I knew that we needed to work on “us” so that we were a better team.”   To do that Sharon and her husband started having weekly lunch dates while her son is at school (an ingenious way to avoid the costs and challenges of finding a sitter).  More important Sharon reports, “we get a chance to check in with each other and have adult conversations.”
  • Autism parenting expert Laura Shumaker, author of A Regular Guy and mother of an adult with autism, worked hard (and still does) to keep her marriage strong.  See her blog How This Autism Mom Stays Married for more good ideas.

3. Do Something for Yourself – No Really, Do It

  • Request respite care so you can do simple things for yourself.  If you don’t have family or friends who can provide that respite time, check with your local Easter Sealschapter as they may offer respite care for families in need.
    • Jennifer F, of McLean, VA advises parents to, “do whatever healthy thing they can to help them cope with the challenges their family faces… a new or old hobby maybe? Even if it’s not something you can get to every day, do SOMETHING for yourself.”  She found a hobby that directly reduces isolation.  She started a blog to help her cope and share with others.   “I included a ‘Stuff That Work For Us’ page to share what little things help us get through the day.

4. Communicate Regularly and In-Person with Teachers, Aides, and Other Parents

  • James Vaughan, father of 6th-grader Kian, and organizer of FAAST – a support group for families in Utah has had consistent success working with the teachers and special education providers in his school district.  Among the many helpful pieces of advice he shared in this interview last year, was to communicate frequently with teachers and aides “all year long – not just during the IEP process”.   “We regularly check in to make sure we are helping each other,” James explains.  “We let [my son’s teachers and aides] know things we are trying at home that are working, and notify them of any changes that could impact [his] performance in school that day.”  Sharon Esch adds that she is in contact with her son’s speech and occupational therapists on a weekly basis.
  • LoriRoseYurtin, a San Jose, CA mother has been experiencing difficulties setting up play dates for her 10 year-old son.  She advises parents to  “keep the lines of communication open with the teacher and with other parents.”  Educating other parents helps them become more prepared for and receptive to play dates.  She adds, “I am very open about [my son’s] challenges and his issues with playdates.”
  • EmeraldDriver of Caldwell, ID works hard to make sure teachers of her two children understand their specific needs.  “[When] I explain [their] little quirks and how to spot them or handle them, both children tend do better at school and with their peers.”
  • Finally, several parents recommend getting an autism advocate (if you can afford one) to help you negotiate IEPs and the services the school should provide to meet that IEP.  It’s nice to have someone else on “your side of the table” during IEP negotiations.  This is particularly helpful in school districts less experienced with handling autism.

5. Help Prevent Your Child’s Isolation

  • Some kids with autism don’t try, or have a hard time, making friends.  Frequently it’s up to the parent to find ways to their child active socially.  Sharon Esch shares, “I’m always looking for community activities that he can participate in and be a part of the community.”  Over the years her Autism Team has grown to include a day camp, gymnastics classes, and piano lessons among other activities that help her son interact with others.
  • When you spot bullying at school take action by talking to the school and other parents immediately.  Enlist the help of the parents, teachers and students to look out for your child.  Many parents reiterate how critical it is to prevent bullying and encourage caring in the classroom by educating the entire classroom about autism at the beginning of the year.   Many parents have become adept at giving the 30-second explanation of why their child is behaving differently to another child.   Heather Ludeker offers this one: “He has autism. It means he thinks differently than you or me and doesn’t always know how to show it in the right way.”
  • Social integration and occupational therapy can be very helpful for teaching a child with autism the basics of social skills.
  • Finally, much has been written recently about scouting and autism.  Many parents have found success enrolling their child in cub scouts and boy scouts.  See the recent article, Scouting with Asperger’s: One Family’s Story by Amelia Ramstead in the latest Autism & Asperger’s Digest.

These are not the best or only ways to fight off isolation.  The key thing to know is that you’re not alone as a parent of a child with special needs and you should actively reach out to others.  Many other parents have been in your shoes and know how hard it is.   Connect with them and find out what they do to make their families thrive.

(This blog post, written by MyAutismTeam co-founder, Eric, was originally published on Special Education Advisor on March 20th.  SEA is a really useful site, particularly for all of you thinking about IEPs!   Thank you to the awesome parents on MyAutismTeam for sharing all this wisdom.  As usual, all the credit for the great ideas goes to them!)

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