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In Their Own Words – Does He Rule the House?

August 29, 2010 52 comments

This “In Their Own Words” is by Becki Becker, who has a 17-year-old son with autism. He was diagnosed at two and a half. You can read more of Becki’s writing on her blog, TheOtherSideofNormal.

I overheard a comment by a family member last weekend. He commented that Tony ruled the house – and that we all tip-toed around him.

It’s so true.

I didn’t realize how evident that was until last weekend.  It’s so “normal” for us that we don’t even notice it anymore.  But last weekend we were staying at my parents’ house and it really became apparent. Tony has certain “rules” that we’ve all just become accustomed to.  We’ve all adjusted because he can’t.  It’s not easy and it makes for a very tense environment sometimes.  Here’s what I noticed:  (keep in mind there is no explanation for any of these – they just are …)

Rule #1:  Do not yawn. Especially no yawning and talking at the same time.

Rule #2:  Do not have loud background noise.  That means TVs, radios, computers, vacuums, or hand mixers (can use, but need to alert him first).

Rule #3:  Do not sneeze and scream at the same time (some people do that without realizing it).

Rule #4:  Do not say “blah, blah, blah …”   while speaking.

Rule #5:  I need to see all your old photographs when I visit.

Rule #6:  I also need to take a mental inventory of all your DVDs, and any VHS movies you may have.

Rule #7:  I rule the TV. I will block the other channels while I’m here, but will unblock them before I go.

Rule #8:  No loud unexpected laughter. Please.

Rule #9:  Unlimited baths are expected.

Rule #10:  Friday night is pizza night. It must be gluten-free.

Rule #11:  I need to touch you on the chin and the head every time you yawn, sneeze, or sing.

Rule #12:  Keep things orderly and predictable. Please. I need to know the schedule.

Rule #13:  No deviations in the schedule. Please.

Rule #14:  Absolutely do not change your mind or give me more options.

There are so many other things I could add, so many that they don’t even seem odd to me anymore. To all those we’ve visited, I’m sorry.  I hope it doesn’t reflect as bad parenting.  It is what it is.  It’s part of his disorder — some of these rules come and go, some have been around for years.

What is the lesson here?  I’d appreciate any and all advice.  In the meantime, we will continue to follow the rules.  Because it keeps peace in our house.  And peace of mind is all we’re asking for …

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – 10 Ways to Help Your Child with Autism

August 16, 2010 31 comments

This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.”  Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum. Lydia previously submitted a fabulous post called “Ten Things That I Wish You Would Accept, No Questions Asked.”

Between my blog and the parents’ message board I enjoy visiting, I get a fair amount of questions from parents. Should I let her line up her toys? Would going to his dad’s on weekends be too upsetting to his routines? What can I do to help her get through an EEG?

I always do my best to answer them based on what I would have needed or wished my mom would have done for me, keeping in mind how it will affect the child as he grows up. As I get more questions, and they start to repeat themselves, I’m seeing patterns. I thought I would write something for parents to answer some of those repeated questions, and if they still had more, they can always contact me.

These are in no particular order (meaning, as they pop into my mind), though I will number them 10 to 1. I will use the pronoun “he” for the sake of simplicity and statistics.

10. On a day when he is particularly hard to handle, make a list of the things you love about your child. Share it with someone (spouse, coworker, sibling, pastor, friend; if you’re still stuck, heck, I’ll listen). But how does this help the child? It reminds you of why you love him so much, reorients your attitude, reminds you of why you do so much for this little person. Your improved attitude will have a positive effect on your child. I promise, we can tell when you’re upset with us.

9. Allow your child a chunk of time to engage in or talk about his very favorite thing with you, completely unbridled. People with autism spend so much time either self-redirecting or being redirected, that it often feels like we never get to really dig into what we love without the accompanying being cut off or redirected. Personally, every time I talk about cats, it’s overshadowed by the nagging thought that Leigh or mom or sister doesn’t really want to hear about them. They certainly never ask about Elsie. So for a bit of time, just let him be obsessed. Obsess with him. Pretend that what you’re hearing is the most fascinating thing you’ve heard all week. This subject is where he shines, whether it be bus schedules, the early years of the Beatles, or Thomas the Tank Engine.

8. Label emotions for your child early and often. Last night, an unimportant but abrupt change in plans left me frazzled. First things first; I picked up my kitty. Then I said, “Mom. I’m upset.” No response. “Mom, did you hear me? I’m upset.” The words felt unsettling. “Mom, I’m telling you something. I’M UPSET!” It struck both my mother and I that this was the first time in … ever, maybe? … that I’d come to her and labeled an emotion without prompting and without just acting out. This should not have taken 22 and 7/12 years to happen. Don’t let this be the case for your child. Ask your child frequently, “How do you feel?” You may need to offer suggestions or options at first, but never stop asking.

7. Model, model, model. Rinse and repeat. Model language, dealing with emotions, and facial expressions. Over-exaggerate and explain, step-by-step, what you’re doing and why you’re doing. “Do you see that my eyebrows are pointing inward and how my mouth is puckered? My face is telling you that I’m angry.” “Hey, let’s get your new school shoes when we go to the mall to get so-and-so’s birthday present. People say that we’ll ‘kill two birds with one stone.’ That’s a silly way of saying we’ll get two things done with one action.” “Oops; I expected the ice cream shop to be open. It’s probably closed early because it’s a weeknight. I feel very disappointed about that because I was expecting ice cream from this shop. But we can either go get ice cream somewhere else, or we can wait until tomorrow. Which would you prefer?”

6, Limit choices. If your child takes an hour to get dressed in the morning because nothing feels right, step 1 is to reassess his wardrobe and make sure that he owns only clothing that feels comfortable. Style comes second. That makes step 2 possible, which is to say “You can wear jeans or sweatpants today. Which would you like?” Do not allow him to pick any outfit from amongst 10. When you go to the store to spend his birthday money, rather than allowing him free reign of the toy section, say, “Would you like a game or some Legos? It’s your choice.” Obviously pick 2 things you know he likes, but do not allow him to choose Option C. Children, especially those of the autistic variety, become very easily overwhelmed with too many choices. For a young child, 2 is plenty. Expand the number of choices at your own discretion, but even as an adult, your child may struggle with this and need you to artificially limit his options.

5. Be flexible. If your child prefers to sleep on the floor rather than in his bed, simply move the mattress to the floor. If he complains that his pajamas hurt, let him sleep in his underwear. If he wants to watch pre-school directed television when he’s 18 years old, who’s he hurting? Realize that children with autism, by the nature of their developmental disability, show very scattered skills and abilities. He may be able to drive like a 16 year old, follow stories like a six year old, read like a 10 year old, and express emotions like a pre-schooler. Don’t look at your child as the age he is, but rather as the age at which he functions in each specific area. Cater to these as best you can, because your child cannot help it.

4. Use play to engage. If your daughter likes dolls, a dollhouse is the perfect toy with which to practice language, emotions, and interaction. If your son likes cars and trains, Thomas the Tank Engine characters have faces and speak and can be used to act. Many children like plastic animal figurines, which can be used in the same way. Encourage this type of play with an adult, older sibling, therapist, peers … all of the above.

3. Communication options. Regardless of how verbal your child may seem, teach him at least one alternative method of communication (PECS, sign language, typing, text-to-speech, etc). I was very verbal at a young age (2, 3), but the topics on which I can be verbal have always been limited. As I’ve grown older, I’ve learned to take fragments of things I’ve either said in the past or have heard others say and piece them together so that it sounds like intelligible speech. It’s really complex delayed echolalia. Very little of what I say out loud is both my own and novel. In order to produce new ideas, I need to write. In order to process, I need to write. In fact, and this may not make sense, I often do not process what I say. I can piece the fragments together and form a response based on what I know I should say, but most often, it would be impossible for me to repeat what I’ve just said to you, because I never processed it. Part of my brain gets left out. Even if it appears that your child is keeping up verbally, if he is on the autism spectrum, there is a good chance that a second means of communication would serve him well.

2. Don’t be scared of different. If I want to use a TTS in public and I’m not afraid of “what people will think,” you had better not be either. If your child wants to wear clothing that he finds comfortable and you find unattractive, and you’ve explained that “people typically do not wear clothing like that. They may look at you and think you are strange” and your child has no problem with that, then let him be. If he wants to text and wear headphones during church because it’s the only way he can possibly stand to be in that crowded room right then, and you’re afraid people will think he’s rude, then I question why you’re trying to impress people at church. If you know your child can only process auditory information when his hands are doing something (for me, it’s Spider Solitaire on the computer), but it looks like he isn’t listening, I ask you: Would you rather have him hear you, or look like he hears you?

1. Be consistent. If you’re upset, stressed, scared, overwhelmed, and yes even exuberant, keep your expressions of intense emotion to a minimum. They will confuse your child. Children with autism need their parents to be the same, above all else. It’s okay to practice labeling and expressing emotions, but only insofar as your child can understand them and can do the same for his own emotions. I am grateful for almost nothing more than the fact that my mom has always been rock steady in every way. You can use a lot of words to describe people on the autism spectrum, but “forward thinking” isn’t usually one of them… we live in the here and now, and if here and now is confusing or not right, then our worlds crumble. We can’t see beyond the right now to the what will be. We like routine because it’s consistent. Bedtime needs to have the same routine, day in and day out, as does wake-up time, meal time, and time to go to the grocery store. It may be boring to you, but it will make for a much happier child. If something different is going to happen, please let us know what to expect and remind us several times. Check for understanding.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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