Ten Things Every Child with Autism Wishes You Knew

(My mom found this on the TACA site and it’s powerful. It made me cry because this is the window I’ve needed into Gavin’s world).

Ten Things Every Child with Autism Wishes You Knew By Ellen Notbohm from the book Ten Things Every Child with Autism Wishes You Knew (© 2005) (Future Horizons, Inc.)

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute — the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult. Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.
© 2005 Ellen Notbohm Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew, both ForeWord Book of the Year finalists and iParenting Media Award recipients. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world. Her new book, The Autism Trail Guide: Postcards from the Road Less Traveled, is an October 2007 release. To contact Ellen, explore her work or sign up for her newsletter, please visit http://www.ellennotbohm.com

Phenol Addiction

Oh dear, oh dear. I have finally found a minute to get back to my research and it’s not looking good for Mr. Gavin. The TACA (Talk About Curing Autism) site has been my go to place every time I have a question/issue. Since I’ve been feeling like some regression has been taking place, I wanted to see what I could find out. There’s an article titled “What is It? When Something Is Going On, Strange Behaviors, A Plateau, An Old Self Stims”. Long title, but that’s just what I was looking for. In it, there’s a checklist of things that could possibly be causing some of the old tendencies. Phenol overload caught my eye.

Phenols, salicylates and additives are a problem that typically needs to be addressed after the Gluten Free / Casein Free (GCFC) diet has been started. Generally it is recommended to address foods high in phenols or salicylates, and additives about 2-6 months after you start a GFCF or other similar diet.

Phenols are a unique properties that can be high or low in foods. The higher level of phenols found in food seems affect children on the autistic spectrum or individuals with sensitive guts or immune systems. In addition, salicylates and additives can also have a negative affect and in many cases these need to be avoided all together.

It is important to note that almost all foods have phenols, just some have more phenols than others, and a child with PST has trouble processing them, so you want to reduce the HIGHLY phenolic foods so the child’s body does not get overloaded in trying to process the phenols it is getting anyway.

People who eat a large quantities of phenolic foods or foods containing salicylates or additives can experience some of these negative side affects:

• laughing at in appropriate time (at night or when something is not funny.)
• strange rashes that appear on the body
• erratic behaviors and moods
• self stimulatory behaviors
• night wakenings
• have a difficult time with their stools (with constipation, diarrhea or undigested foods.)
• headaches

So, reading through the above list, Gav has every one of those issues right now (maybe not headaches, but I’m not sure since he doesn’t usually say what hurts-he just screams). That would also explain his seemingly obsessive desire for apples lately. I thought it was a good thing-what a healthy snack! Looks like he has a phenol addiction and is feeding his addiction with apples. He had 3 today.

Wow. I just can’t win. I think I’m on track and doing well with this whole diet thing and turns out, what he’s eating is STILL harming his body. I also began menu/grocery planning to begin the Specific Carb Diet in the next 2 weeks so hopefully we’ll see some positive results. To be completely honest, I’m deathly afraid of starting this for some reason. I know we’ve already eliminated a lot of the problem foods already, but for some reason I can’t seem to put one foot in front of the other to make this happen. I keep giving myself a time frame for a start date and it keeps getting pushed back. I’m sure it’s not as hard as it seems, the GF/CF wasn’t that bad. I just can’t wrap my head around changing everything AGAIN.

These Walls Are Made of Blue

This is officially Day 3 in our new house. We almost have a working kitchen and were able to move the last of our belongings out of my parents’ house this weekend. We spent the ENTIRE day Saturday hanging out and getting the boys acclimated. All was fine, but I was very nervous about bedtime. Gav loves staying at Grandma’s so I was worried that come bedtime, he’d be putting on his shoes ready to head back to her house. I prepped him all evening for sleeping at the new house and when bedtime rolled around, he was grinning like the Cheshire Cat! I have never seen him so giddy to go to bed. I think the biggest thing for him was that Liam was going to be sleeping in there with him. (If you’ve read earlier posts, in the past we’ve had major sleep issues with Gav so we were hoping that by having the boys share a room, this would solve some of that). Gav got out of bed his usual number of times (to test us) but then happily stayed in bed and talked to Liam. There were both being silly and laughing. What a wonderful sound! Last night was even better. He did not attempt to get out of bed at all, but laid happily in bed until he fell asleep. Maybe we’ve found the answer. Thanks, Liam!

Gav has been extremely happy to be here and the transition for him went smoother than I imagined. His new thing these past few days has been giving tours. He’ll stand in the hallway and describe the house (all to himself, of course. If he catches me listening, he clams up). Here’s what we usually hear from the hallway. “This is the hallway”. “Behind these walls……” “This will be the kitchen”. “This will be the laundry room”. (Both of those rooms have yet to be completed, so he’s right on!). And the best one yet, “these walls are made of blue.” Think I’ve been talking about paint colors much? So if you’re ever in the neighborhood, stop by! Tours daily!

I’m It and Other Things

So, I was tagged by my dear friend Em and the rule is that I have to answer the questions with only one word, so here goes…….

1.Where is your cell phone? purse
2. Your significant other? hot
3. Your hair? bothersome
4. Your mother? precious
5. Your favorite thing? boys
6. Your dream last night? dreamless
7. Your favorite drink? coffee
8. Your dream/goal? healing
9. What room are you in? office
10. Your fear? pedestrians
11. Where do you want to be in 6 years? home
12. Where were you last night? painting
13. Something that you aren’t? tall
14. Muffins? chocolate
15. Wish list item? CX9
16. Last thing you did? painted
17. What are you wearing? sweater
18. Your TV? dusty
19. Your pets? dead
20. Friends? perfect
21. Your life? lovely
22. Your mood? excited
23. Missing someone? Amy
24. Your car? black
25. Something you’re not wearing? hat
26. Your favorite store? Ikea
27. Your favorite color? gray
28. When is the last time you laughed? today
29. Last time you cried? uh….

Tag you’re it: Amy, Kate & Chris, Whites

And, I received 2 VERY helpful comments on yesterday’s blog directing me to pecanbread.com for all things SCD related. (Thanks ladies for your help!) I am now extremely excited and eager to try this diet out. This web site is AMAZING! It has tips, recipes, lists of safe foods, and on and on. It’s very comprehensive and easy to follow. Whew! I feel much better today. What would I do without the internet????????

And, there’s a great story in US Weekly about Jenny McCarthy and her son. The article briefly stated that she was going to be opening an autism child care center in her home next year. Um….how cool is she? How cool would it be to be a part of that?

Why We Need To Do This

Someone on my research team sent me a trial study that was conducted on 2 autistic children. Both were first put on a gluten-free diet with results recorded, then they were placed on the Specific Carbohydrate Diet. See for yourself why we need to do this:

(Comparison of changes observed between each intervention. Sorry this is not easier to read-I was having a bit of trouble with the chart so I had to just list).

IMPROVED BEHAVIORAL CHANGES:

GF/CF Student A: less stimming, began to speak for the first time since regression, more vocab, improved eye contact

GF/CF Student B: loss of self-mutilating behavior, loss of constant stimulating behaviors

(Now for the really cool stuff-these are the behavioral changes in the same two students but on the Specific Carbohydrate Diet instead)

SCD Student A: no dietary self-limiting, no fetal positioning, no night waking (WOO HOO!), loss of autistic gaze, less tantrums, more words, clearer speech, more aware of environment, greater imitation skills, greater self-control, less hyperactive, loss of head-banging,less screaming and crying, more social, more helpful, greater imagination

SCD Student B:no dietary self-limiting, no fetal positioning, no eye covering, significantly less night waking, loss of autistic gaze, less tantrums, more aware of environment, not biting others, less screaming and crying, more initiating, more verbalizing, smiles and laughs appropriately

IMPROVED PHYSICAL CHANGES:

GF/CF Student A: diarrhea decreased from approx. 7 per day to 1 per day

GF/CF Student B: same as student A

SCD Student A: no food induced eczema, solid stool, less abdominal distention, no panda eyes, loss of foul body odor

SCD Student B: same as student A on SCD

DETERIORATING BEHAVIORAL CHANGES:

GF/CF Student A: self-limiting diet

GF/CF Student B: self-limiting diet

SCD Student A: none

SCD Student B: none

And there were no deteriorating physiological changes to report at all.

WOW! After reading that, I don’t any more convincing that this has got to be our next step.

Quatro

(Pretend that you’re reading this on October 5th.  With the craziness of this past week I was not able to get my act together to write this on his actual birthday).

Happy Birthday, Gavin!  Oh what a wonderful year you’ve had.  You’ve grown and learned so much.  You are such a trooper and Mommy and Daddy are so proud of you and who you are becoming. 

Gavin, I love your bright smile, you sparkling eyes and the way you love your brother.  You always make sure he has a toy to play with and that he’s taken care of.   I love how much you love to sing and read books.  One of my favorite things is listening to you read.  You have such a sweet little angel voice.

I love that you love to cuddle and take “rests” with me during the day.  I love all your new big words and the songs you make up.   I love when you talk about school and what you did while you were there.  I love how much you love your family and get so excited when you’re around them.  I love how things need to be just so and your latest obsession with hoodies.

 

As much as I want you to stay little, I am excited to see how much you will grow and change this year.  You will always be my sweet little muffin and daddy’s angel boy. 

I love you Mr. Gavin!  Happy 4th birthday!

Yay Update!

Yesterday, I finally got around to calling a behavior counselor I’ve been hearing about.  She works strictly with autistic and asperger syndrome kids.  I’ve heard nothing but good things about her and we have an appointment for November 10th!  The even better news is that our insurance will completely cover each appointment and there is no limit to the number of visits!  It’s awesome how God works.  Just as we’ve been having some discipline/behavior issues with Gav, this woman has come highly recommended, but I was told she has an extremely long waiting list.  I’d say a month wait isn’t too bad!

Yays and Nays

There’s so much going on in my head right now and to keep this from being extremely long, I’m more or less going to just list everything. 

Yay for:

-Jenny McCarthy: she’s my autism hero!  Please read Mother Warriors, you won’t be disappointed.

-increased language and pronoun usage from Gav this week

-I have been so much better at getting all his vitamins and supplements in him every day

-I think I found an alternative to the Nystatin (yeast killer) that Gav refuses to take. 

-Gav now knows The Pledge of Allegiance.  My tax dollars hard at work!

-our new house is almost ready!

And for the nays:

-It’s possible we need to have Gav on the Specific Carbohydrate Diet.  Bye bye rice, rice pasta, and rice wraps. (Seriously trying not to panic)

-Just found out you shouldn’t mix enzymes and probiotics.  Awesome.  Been doing it this whole time. 

-Stimming and stuttering are back in full force.  He must still be eating something he shouldn’t.   Now I just have to figure out what it is.

-Gavin has been EXTREMELY loud lately.  He is constantly yelling at the top of his lungs, especially when other people are trying to have a conversation.   There’s really no discipline that quiets him down.  I’m at my wits end with that whole thing.