My child is autistic. Everyone talks about autism, and we try to “raise awareness,” but we don’t talk about what to say or how to say things. Life is hard, and we need to encourage one another, and when you don’t understand a situation you may not be aware of how your words come across.
Sometimes I feel like I have it all together, and sometimes I feel like I am hanging on by a thread. It is in those “hanging on by a thread moments” that I need an encouraging word. I have had very good friends say to me, “I thought you didn’t know that there was a problem, so I didn’t say anything,” or “I didn’t know what to say.” So I have put together a list of things I, and other autism parents, get asked, and ways to ask your questions that will help you understand without making the parent feel judged.
Shouldn’t he be (fill in the blanks) by now?
Yes we get it. We know that he should be potty-trained or be talking or writing his name or be able to tell time. But guess what, he/she doesn’t. Because sometimes when a child has delays, this delays normal milestones. By pointing out my child’s delay, I hear you saying that I am somehow doing a bad job. And sometimes we actually hear from well-meaning relatives that we are doing a bad job. Maybe that is not your intent, but that is definitely what we hear.
(Child’s name) is talking better, has improved in some area, or some other compliment of said child.
Sometimes it is hard to find something to compliment, and it seems like autistic children are “stuck” in a phase forever. Jack-Jack used to say the phrase, “Is it the one that was, or is it the one that wasn’t?” We didn’t even know what he meant by it, but we heard it hour after hour, day after day, month after month. We really couldn’t see past that stage, but having a friend or relative notice that he was getting better at something else was a blessing in our lives.
I could tell right away he was autistic
I hear this one often. Your neighbor’s cousin is autistic and does something similar to my child. When you say these words all I hear is that you see my child’s negative or odd behaviors. Please look past those things and see what a beautiful, wonderful person he really is.
Something the child does well.
I know that sometimes with all the touching (he touches everyone too much), jumping, and constant motion, it may be hard to find something, but sometimes as a autism mom, I cannot see the good. I need other people to find it for me.
Maybe you should keep him home until he gets through this stage.
Friends have told me that they have been told to keep their child home from church. That should never happen, and I do have to say that the church we attend has never said those things to us. When Jack-Jack was younger he had problems at restaurants, and he still has problems going to church many weeks. Our family has spent many dinners, church events, and outings separated while one (or more) of us have walked outside, taken him to the bathroom (which was his escape location), or entertaining him in some other way. Keeping him home would not help him to get over his dislike of lights, sounds, people, etc. Sometimes we do keep him home if he is not feeling good or is overly stimulated. Please do not tell a parent to keep your child home. Doing so reminds me of the villagers in The Hunchback of Notre Dame. What we hear you saying is, “Please keep your hideous child out of our sight.”
How can we help you make this experience better?:
Offers of help say that there is hope. It also communicates that you care. Care is something most autism parents need more than anything else. We don’t take care of ourselves, and we are so focused on our child that unless an act is overtly caring many times we miss it. Even if there is nothing that can be done, say, “How can we help?” What we hear is “we value you.”
I work with an autistic child, so I understand.
Jack-Jack is 12. Last year, he walked up while I was ironing a shirt in a hotel room. He looked at the iron, and I said, “that is hot. Do not touch.” He then walked over to the counter and eyed my curling iron. I said, “that is hot too. Do not touch.” And he promptly touched my curling iron and burned his hand. I was standing right there. I thought he understood hot. I thought he would listen. So if I can’t understand what goes on in his brain, how can you possibly know?
Can you share some stories with me to help me understand better?
You look tired
This is another one I hear frequently. I get it. I look like I don’t sleep much. Guess what? I don’t. In the movie, Elf, Wil Ferrell says he got a full 40 minutes of sleep. That is my life. NO matter what time Jack-Jack goes to bed or what he eats, or what he does before bedtime, or how much exercise he gets, he needs much less sleep than we do. So I look tired because I am tired. And no amount of make-up will cover that up.
What do you need?:
Many times we really don’t even know what we need, but just hearing those words seems to make me feel like I am a person. Because let’s face it, when you spend your waking hours taking care of other humans you sometimes forget to drink your coffee, eat, sleep, bathe and dress.
Did you see the article about?
Yes, I did read it. I am sure I read it. The study that links low vitamin D to autism – Read It! Yes, my vitamin D levels were probably low when I was pregnant. The study that links autoimmune diseases in the mother with autism – Read It! Yes, I have an autoimmune disease. The study that says that autism risk rises with maternal age – Read it! Yes, I was 40 when I had Jack-Jack. Does knowing any of these things help me right now? Will it make me sleep better knowing that some research points to me as the cause? And I can’t do anything about it now.
I would love to get together with you. Can I drop over for coffee?
It is difficult for me to visit your house because Jack-Jack is petrified of dogs and some cats. We have worked on this, and maybe someday we will actually get a dog, but that is not on the list of things I need to work on right now. But life is lonely for an autism mom and child. I know many moms would love some company once in a while, but sometimes going out one more time is exhausting. Or visiting a new place is hard for the child. Even if we can’t get together, knowing that someone thought of you makes life a little easier. And through conversation over coffee, you will probably find out that yes, I did read about that study and lack of Vitamin D.
Your child seems high-functioning or low-functioning
This is one question that I do not mind because I think it is a perfect opportunity to help educate about some misconceptions, but other parents seem to have a problem with it.
Basically I have no idea what these terms mean and I doubt most experts know. Jack-Jack is potty trained, feeds himself, and he can put his clothes on. He is high-functioning on the potty training scale, but at age 4 he was not. But life is not measured in just potty-training. He cannot tie shoes. He cannot tell time. He reads at a 2nd grade level. So he is low-functioning in those areas. He is kind, caring and loving, so he is high-functioning in those areas. If your child isn’t as kind, should I label him low-functioning on the plays nice with others spectrum?
You are doing a great job:
Let’s face it, raising children is a thankless job. Moms and dads don’t get awards for the jobs they do at home. There is no “Best in Folding Laundry” category, or making dinner, washing clothes, keeping things humming. Everybody notices when things aren’t going smoothly, and in a house with a special needs child, many times things don’t get done or slip through the cracks, because we are just basically surviving. Moms of all ages need to hear they are doing a great job.
Maybe he would be better with (insert special therapy)
I have lived with my son day-after-day, night-after-night for 12 years. I have some trusted advisers that I consult. We homeschool and believe that is what is best. And Jack-Jack needs to have a basic level of trust to work with anyone. He trusts women more than men. He distrusts doctors and medical/therapy offices. So sometimes therapies do more harm than good.
How can I pray for you?
This is the most important thing a person can say to me. I believe in the power of prayer and believe that love and prayer cover a lot of ground. Not everyone will want prayers, but if you ask, it still communicates care in a way that many other words don’t.
Does your child have any talents?
Yes, yes he does. But his talent doesn’t seem to be something that will get him into MIT or play with the Boston Symphony. You see, not all autistic children are good at math or a super musician. Jack-Jack’s super power is he is incredibly cute. Cute at 10 and cute at 30 are two different things. He also has a great ability to memorize lines from Disney movies. Maybe that will come in handy someday, but for right now, we need to work on some other skills that are sadly lacking.
I’m here to talk!
And really doesn’t everyone need a friend.
Patty @ A Mother’s Random Thoughts
To Read More About Jack-Jack – CLICK HERE The Funny Side of Autism