Do you get the support you need?

By Jennifer Lingle, M.Ed.

Do you relate to this scenario?

It is 8:00 p.m., and your 7-year-old son is bouncing off the walls.  He is overtired, had a long day of school and therapy, and is bumping into things, bouncing on the furniture, and repeating videos aloud.  You think to yourself, “How in the world am I going to get this boy to sleep tonight?  I don’t want him to be exhausted tomorrow.”  So, you say to him, “Tommy, go jump on the trampoline for 15 minutes.  First trampoline; then bed.”  Your significant other says to Tommy, “Why don’t you go lie in bed and watch a movie? That will calm you down.”  You look at your partner in disbelief, but are too exhausted to fight, so you say, “Okay.  Go get in bed and watch a movie.”

What just happened here?  You wanted Tommy to jump on the trampoline because you know that jumping tires him out and gets all of his energy out.  Your partner thought it would be better for him to lie in bed and watch a movie, because movies keep Tommy quiet. However, you don’t want Tommy to watch a movie, because that sometimes makes him wake up in the middle of the night reciting scenes from the film.  You have had this discussion before, but tonight is not the night you feel like discussing how your partner is not on the same page with you.

Here is another scenario:

Your daughter Becky is on a gluten-free, dairy-free diet.  Whenever she eats anything with gluten or dairy, she gets agitated, is awake all night, and gets bad eczema.  Your mother (Becky’s grandmother) offers to take Becky to the park one Saturday.  You are thrilled to have two hours to yourself.  You don’t think to remind your mother of Becky’s allergies, because she is fully aware of Becky’s diet.  Out the door they go for a few hours at the park.  They come home a little later and Becky is beaming from ear to ear.  She had so much fun with her grandma.  You continue your day, sticking to Becky’s schedule, which includes playing with Legos, Play-Doh, walking the dog, and going out for dinner with the family.  As the day progresses, you notice that Becky is very agitated. She rocks back and forth more, and does not engage in conversations with you at dinner.  You hope that she is not coming down with something.  That night, Becky doesn’t sleep at all.  Little did you know that Becky’s grandmother gave her a “little” treat.  It was just a small cup of ice cream.  Surely, such a small amount couldn’t harm her granddaughter.

It is very important to be on the same page with everyone in your family.  I know this can be a challenge, especially if your parents rely on their experiences (because they raised you and you turned out so great), or your partner thinks he or she is right.  Let’s take a moment to acknowledge that your family’s reasons for doing things a certain way is well meaning. They love you.  They are sincere in thinking they are helping.  They want to make your life easier.  They love your child, and think they are being supportive.  However, raising a child with Autism takes more than that.  It takes consistency, sticking to a routine, adhering to a plan, and being on the same page.  Here are some steps you can take to get there.

• Communicate. The first step is to have a conversation and let everyone involved in your child’s life know how you feel.  This is not going to be easy, but you can do it.  If it is easier for you, you can also write a letter to communicate your feelings. Either way, you should communicate the following: “I know that you love my son and me.  I know that you are trying to help me, but I need you to know what I need right now.”  Also talk to your partner, and tell him or her how you are feeling and what you need to feel supported.

• Inform and explain. The next step is to inform yourself and become clear about what Autism is so that you can explain it to other people in your family.  You can also direct them to these websites:

http://www.autismspeaks.org/what-autism

http://www.definitionofautism.com/

http://www.autism-society.org/

• Profile your child.  Design a profile of your child; include his strengths, challenging behaviors, sensory issues, allergies, activities that he finds reinforcing, rules, and consequences for breaking the rules.  Keep in mind that different places and different people tend to have different rules.  This is okay as long as the major rules stay intact.  For example, the rule “Keep your hands to yourself” should apply in every situation. If you feel a certain rule is non-negotiable, make that clear.  Establish the rules with the people in your child’s life ahead of time.  Then, be sure to review those rules with your child every time he is with another person or going to a place that has different rules.

• Outline the consequences of broken rules.  Clearly let the people in your life know what happens when everyone isn’t on the same page and rules are broken.  Besides the obvious health and safety factors, children with Autism thrive on routine, structure, and consistency.  While some adults may think they are giving a child a break or making an activity more fun by changing the rules, what they are actually doing is confusing the child.  Generalization, the ability to carry over skills learned in one area and apply them to a new situation or area, can be extremely difficult for children with Autism.  For example, when you teach your child how to wash his hands at home, he may not know what to do when confronted with a sink in the bathroom of a restaurant.  This can be very stressful for your child.  If it is difficult for your child to remember and apply new skills across a variety of settings, imagine how difficult it would be for him to try and figure out who has what rule, when it is okay to break the rule, and when he will get in trouble for breaking the rule.  So while the people in your life who love you and your child very much think they are doing a good thing, they may actually cause your child more stress.

• Work together. Working together creates a team, a united front, and a calmer household.  While you and your partner come from different homes, parents, and childhood experiences, you both have valuable skills to bring to the table.  Your input, insight, and support are essential when raising your child with Autism.  On those days when you are frustrated and you just wish you had more support, remind those around you of what you need.  Maybe they just forgot, and thought they were doing things right.

You know firsthand from observing your child’s challenges with communication how important it is for him to communicate his desires to have his needs met.  It doesn’t matter if he is verbal (using his words), non-verbal (using gestures), or uses symbols (drawing pictures or writing words) to communicate.  You and your family are very concerned with creating a functional communication system for your child with Autism, and rightly so, as this is of utmost importance.  But how is it going with your communication system? Are you letting others know about your needs in some way, so you can get the support you need?

If you need additional support, be sure to email JenniferLingle@AutismConsultingandTraining.com to set up your free “Getting To Know You” call today.