G.P.S. Newsletter for September

 
10 ways a parent can help their autistic child


It seems impossible, but somehow you’ve crossed everything off your initial to-do list, and your son or daughter is set. Maybe he is now firmly ensconced in an Early Intervention program, and you’ve already booked the eight million school evaluations required to get him into a pre-school program. Perhaps your daughter is older and has just entered a classroom, spent a few weeks there and is doing well. You’ve dotted your I’s and crossed your T’s, and for once there’s no phone call to make, no appointment to schedule. You’ve gotten the help your child needs.

And perhaps as you’re enjoying a latte (which I hope you are, you deserve it), you wonder what’s next.

First of all, make sure you savor the moment. Take the time to celebrate your successful navigation of your state’s Early Intervention system or your school district’s IEP team, and give yourself about twenty hugs and buy yourself a little something fun.

Then take a deep breath, gird your loins, and move on to the next phase of your life with an autistic child.

I remember being at that phase, with my eldest son who is severely autistic being enrolled at three-and-a-half in a full day pre-school program and pregnant with my second child. While part of me wanted desperately to sit in bed all day and watch “Sex and the City” re-runs, I knew there was still a lot to do that I’d put off while trying to get the appropriate services for my child and dealing with our move to a new state. Here are ten things I did (or wish I’d done) after the ink dried on my son’s IEP.

  1. No matter how exhausted you are, get your child out in the community. It was a struggle with us with Justin (I have the tiny little bitemarks on my body to prove it) but getting him out so he could have a repertoire of leisure activities was crucial to his happiness and to our family’s. It set him up for a lifetime of being able to try different things, which will set him in good stead when I’m no longer here to take him places. Yes, I’m always planning.
  2. If you haven’t already done so, join a parent group and/or your school district’s special education PTA. You will make invaluable connections at both. Try to find parents of kids with your kid’s level of autism as you’re making friends. These people will be a wealth of information for you and a lifeline.
  3. If you can afford it, hire an advocate to check out your child’s school program. A fresh set of eyes may see areas that need to improve, or may reassure you that they are doing all they can for your son or daughter. It’s always good to know one in case you need an advocate at an IEP meeting. If you’ve already met you won’t be scrambling to find one.
  4. If possible, volunteer at school functions or offer to be a class mom. This is a great way to get to know your child’s teacher and your school’s administrators better. You may also make friends with other parents too.
  5. No matter how difficult your child can be, take any offer of babysitting you can and get out. You need a night off from autism once in a while. Even if it’s for a few hours, a break will help.
  6. Now that your child’s program is set tackle the big issues one at a time- perhaps it’s sleeping, or eating, or potty training. If your child is in a private school there may be a BCBA on staff who can help you. If not and you can afford it, consider hiring a BCBA from an agency. Pick an issue and prioritize.
  7. Educate your friends and family as to what’s going on in your household. Perhaps you’ve been too tired up to this point to talk to people not in the “tribe” about what raising an autistic child is really like. It’s time to tell them and ask for the support you need, even if it’s just an ear to listen. My husband and I kept too much to ourselves, and if I could go back in time I’d be more open with everyone in our lives.
  8. Make those doctor appointments for yourself that you’ve been putting off. Just do it.
  9. Get involved in an autism walk in your community. It is so powerful to meet so many families like (and unlike) yours. It will give you strength.
  10. I can’t stress this one enough- take care of yourself, not just your kid. Autism is a marathon, not a sprint. You owe it to yourself and your child to be whole, healthy, and happy. Do whatever it takes to get there.


Interacting with a Child Who Has Autism Spectrum Disorder


Autism spectrum disorder (ASD) is a developmental disorder. It affects how children interact and communicate with others. The disorder is called a spectrum disorder because children can be anywhere on the autism spectrum.

Children with ASD start to show symptoms at an early age. The symptoms continue during childhood and adulthood. Healthcare providers don’t know why some children develop ASD. It may be a combination of genes they are born with and something in their environment that triggers those genes.

Children with ASD have trouble relating to other people. They have trouble making eye contact. They often withdraw into themselves. They may seem uninterested in relating to family members.

But some children with ASD may love to keep talking with family members, friends, and even strangers about a topic they are obsessed with. The problem is that they may talk about it too long. Or they may talk only about that one subject. This can push other people away.

If you are a parent or grandparent of a child with ASD, it can be heartbreaking if you feel like you just can't connect with him or her. But learning more about these disorders and what has helped others can help you and your relationship.

ASD has no cure. But there is hope through treatment. Many children can learn to communicate and interact. Healthcare providers and mental health experts have learned a lot about how to break through to these children.

Here are some things we know about children with an ASD:

  • They may not be able to understand your nonverbal communications. They may not react to your smile or frown.

  • They take things literally. You need to be careful to say exactly what you mean. If you hurry the child by saying "Step on it," don't be surprised if he or she asks what to step on.

  • They may only be able to handle one thought or idea at a time. Keep conversations focused and simple.

  • They may want to only talk about the one thing they are really interested in at a given time.

  • They may see things differently than you do. You may not even notice ordinary sounds, tastes, touches, smells, and sights. But these may be physically painful to the child.

There are no hard-and-fast rules on how to communicate with a child with ASD. But many family members have had success with these tips:

  • Be patient. It often takes a child with ASD longer to process information. You may need to slow down your conversation to his or her speed.

  • Teach the child how to express anger without being too aggressive. Children with ASD should know that they don't have to hold their anger and frustration inside.

  • Be persistent but resilient. Don't let your feelings get hurt if the child does not respond to you as you'd like. Children with ASD may have trouble both showing and controlling their emotions. They can be blunt in their responses. Don't take this personally.

  • Always stay positive. Children with ASD respond best to positive reinforcement. Be sure to talk about or reward good behavior often.

  • Ignore irritating attention-getting behavior. A child with ASD may act badly at times to get you to focus on them. Ignoring this behavior is often the best way to prevent it. Also talk about and reward the child's good behavior often.

  • Interact through physical activity. Children with ASD tend to have short attention spans. This is especially true when it comes to communicating. Running around and playing outside may be a better way of sharing time together. It will also let them relax and feel calmer.

  • Be affectionate and respectful. Children with ASD often need a hug, just like other children. Sometimes they need this much more than other children. But some children don't like to be touched. Respect their personal space. Never force physical affection on an unwilling child.

  • Show your love and interest. Children with ASD may have trouble showing their feelings. But they still need to know that you love them. Go out of your way to express your interest, caring, and support.

  • Believe. A child with autism is first and foremost a child. He or she is a growing person with unknown possibilities. Believe in what the child can do. Don’t define the child by a diagnosis.  

  • Take care of yourself. It’s OK to take a break. Join parent support groups. Or ask understanding family and friends to care for your child so you can recharge. School psychologists and counselors can also provide resources to help you.

It can be challenging to interact with a child or grandchild with ASD. But it is one of the most important things you can do to help that child learn. Research shows that early, frequent, and loving involvement of family members is one of the best ways to help children with ASD. 



References: 

10 autism speaks . ways a parent can help their autistic child . https://www.autismspeaks.org/blog/ways-parents-help-autistic-child

Stanford Medicine , Interacting with a Child Who Has Autism Spectrum Disorder https://www.stanfordchildrens.org/en/topic/default?id=interacting-with-a-child-who-has-autism-spectrum-disorder-160-46

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