No clothes...Again?

Have any of you ever encountered this? Aiden is going to be 4 soon and he still strips down the the nude. I have heard other parents talking about their children with Autism doing this. Why is that?

Don't let this worry you to much. What I've found is there are a lot of people who do this, particularly when going to the restroom, and it is certainly a behavior not selective to Autism. A good amount of parents say their children out grew the behavior. I hope that offers you some comfort.

I have found that inside our home Aiden strips completely, its what he feels comfortable with. In public he stays completely dressed. Our daughter just turned 2 and hardly understands what nudity is or what the differences are between boys and girls. We have been trying to get Aiden to leave his clothes on in the house, but find being clothed all day seems to overwhelm him. Aiden is day time potty trained, but at night he still sleeps in a diaper, refusing to sleep in bed clothes.

A high functioning child, like my son, can understand the need to wear clothing in public. Sometimes with nothing more than a simple explanation. Understanding the perceptions of others and the appropriateness of social situations in regard to clothes maybe lost on them at first, but seeing you wear your clothes in public will help. Be contentious of how you explain this situation. Children can be impressionable and you really want to avoid making them feel uncomfortable with their bodies. Something like "Mommy wears clothes. Daddy wears clothes. Sister/brother wears clothes. Grandma and grandpa wear clothes. So you wear clothes too."  This rational "normalizes" the behavior.

So what do you do if your child is not high functioning? Continue to explain to the child what it is you expect, just as you would for any other child. There are some things you can do like turning the clothes around so the buttons, zippers, fasteners, etc are in the back instead of the easily excess able front. You can also try dressing in layers.

The explanation I found most acceptable was the sensory one. As you know certain textures of clothing may be found to be irritable to children with Sensory Processing Disorder or Autism. Things like tags and rough fabric may be one cause for stripping. Fabric softener is a good way to soften clothes if rough texture is difficult on your loved one. It was explained that some children need the pressure that loose fitting clothing cannot provide. So the loose fitting clothing may be seen as an annoyance.

This got me thinking, what if you dressed your loved one in clothing that provided more pressure? How in the world do you do that without tight fitting clothes? Swimming shirts like those that swimmers and surfers wear are made of spandex type of material and may provide the right amount of pressure. They are tight enough to fit under clothing and maybe acceptable to your loved one. Its worth a try if stripping is a constant issue for your family. Another solution comes in the form of weighted vests and shirts. They are sold online from multiple different companies and are fairly common in the Autism community. They range from $50.00-$100.00 each. The vests function much the same as weighted blankets and are being designed to be more fashionable.

Lots of products are being fashioned to help your child or loved one with their sensory needs. I stumbled on seamless socks today while looking at different types of vests. Therawear has some for sale on their website, but I cannot determine of the price is per pair or per set. I have also found that Striderite makes some as well. Either way for some parents and caregivers things like this maybe priceless. 

Here is a blog from a sensory mom that gives great tips for dressing a sensory sensitive loved one. I hope this helps you: 11 More Tips for Dressing Your Sensory-Sensitive Child

Here is a link to other sensory coping items for use and wear: Must Have School Gear for Kids with Sensory Issues

For more tips and help with your specific struggles contact speak with your care team. Behavior modification provided by your ABA will be specifically helpful during this struggle. An Occupational Therapist can help with any sensory issues you maybe experiencing.

As always we are here for you at Aiden's Heroes. Follow our Facebook page and Pinterest boards for the latest and greatest from us. Thank you for including us on your Autism journey. 

Tis the Season

"Tis the season to be jolly" they say. Beautiful lights, the smell of pine and cinnamon, happy screeching children, the wrapping paper, bows, carols, family, friends, meltdowns, jingling bells...wait, meltdowns? That's right, meltdowns. Your loved one with Autism will be subjected to more sensory input now than most times of the year. Holidays are always a challenge, even for high functioning kids like Aiden.

Aiden has been particularly sensory sensitive for about a week and a half now. We've had a cold front move in, so all his clothes are long sleeves and pants. People in the neighborhood are putting up Christmas lights. Almost every store you walk into is blasting Holiday music and the smell of pine and cinnamon are almost obnoxious to me, so to him I can only imagine. Out of town family is on their way if they aren't here already. Everything is just so busy and don't think for one moment the stress of the season isn't impacting them too.

How can you help them? Its more simple than you think. First, your out of town family. They, especially to little ones, are practically strangers. Some people believe that being family there is an implied consent to touch, hug, or kiss, your little ones. For typical kids this is acceptable and they can withstand it for brief moments, not so for kids with Autism. Its not that they're being mean, but if touch is few and far between for people in their every day lives, then it is certainly unacceptable for people they hardly know to touch them. So what do you do? Send your out of town family a list. Tell them what the likes and dislikes are for your child and allow them to exercise the "likes" within reason. Most people don't know what to do around a child with Autism, so they over compensate, almost to a sickening level. Your loved one's mannerisms may be unsettling if the behavior isn't understood. If you notice your loved one connecting with a particular family member, take them aside and talk to them. "I see that (insert name here) has really taken to you. That bond is really something special, its hard for (insert name) to connect with people, but you've made it easy for him/her to connect with you. Thank you for being so great with him/her."

How do you handle stores? First know what your child is sensory sensitive to. Aiden isn't particularly sensitive to smell, he will point it out unmercifully, but he can push past it for a time. If you notice a store with strong smells, try to go alone. I know that's tough. Can you order your items online? Sometimes shipping fees are worth it to avoid sensory meltdowns. If not and you must take them call the store the day before. Explain your situation and ask if they will pull the items for you, so you can just go right to check out. I'd be willing to bet 99% of stores will accommodate your request and if your store falls into that 1% that won't, then their competitor will.

Sound is Aiden's Achilles heel, as most of you know by now. We solve that problem with ear protection. Its relatively inexpensive and you can pick up a pair at most surplus, big box, or hunting supply stores. Just keep a pair in the car or in your purse and a pair in the house. That way they can enjoy the same things you are, not be tortured by them.

The holidays can be fun for everyone with some help from you. You're an important part to your child's successful holiday season.

We here at Aiden's Heroes want to wish you and your family a very safe and Happy Holiday and New Year. We hope this next year is better than this one and that you continue to join us on your Autism journey.

You can always connect with us on Facebook and Pinterest! 

To Tell or Not to Tell

Its one of the hardest decisions. Do I tell my child they have Autism? If their low functioning will they even understand? If they're high functioning and doing well, does it matter? Will telling them make them conform to a label?

As the parent of a child with Autism I understand these frustrations and one day I may be faced with the situation. I think this decision is personal to each person. I know, being the type of person I am, I would rather know than not. To me its like the doctor withholding that you have cancer. Now we all know that Autism is nothing like cancer. Cancer can eventually kill a person, but Autism alone does not.

First I think its important to know your child is aware there is something "wrong" with them from a very young age. My son asks me why he has to see so many doctors and he is almost 4. My husband and I don't speak about Aiden's Autism on a daily basis by any means, we just know its part of who he is and we just accept it as part of our normal daily life. If I have to take Aiden to a specialist I say "Aiden has a doctor appointment", but I usually don't have to elaborate. We don't refer to our therapy team as their specialization, like our ABA or OT, we refer to them by name. Still he knows. How? His sister. Our daughter, from what we can tell, is neurotypical. She goes to the appointments with us, but is not there to see the doctor.

For right now, when Aiden asks me what is wrong with him, I simply respond: "Nothing, you are just so awesome and everyone wants to know why." That's good enough for now. I know, when he goes to school, one day he is going to ask me "Mom, do you ever feel different for other people" or "Mom, I don't think I fit in" or "Mom, why is it so hard for me to make friends?". That is when I'll know that it is time to start talking about it.

How you tell your child is going to be important. How you tell them can set the tone for how they react to their own diagnosis. Have you ever received a life changing diagnosis? The day I was told I have psoriatic arthritis and would need medication for the rest of my life was a life changing day for me. The day we received Aiden's diagnosis was a life changing day for me. Those are days you don't ever forget. That will be this day for your child. You need to know your child's temperament, personality, and character. Talk to your child's psychologist or trusted member of your care team around your child's 5 or 6th birthday. High functioning children become self aware of their differences around the age of 6 or 7.

So what about the children who are lower functioning? Remember, low functioning does not necessarily mean unintelligent or low IQ. I've discussed this in prior posts. Its fair to assume they know there is something different about them at or around the same time as their higher functioning or neurotypical peers. If you chose to tell them I would do so around this same age.

How do you introduce it? Slowly. My son is involved with the Autism Society of Greater Orlando, so I can only assume, at some point, he will put two and two together, if you know what I mean. He will draw the connection on his own. I envision the conversation starting with one of the questions I mention above. Of course I feel different than my peers. I've always felt that way, even from a young age. So I would start out by saying "I understand how you feel, but sometimes there are reasons for our behavior that other people can't understand without help." Like what? See I have this question easy. I'm a cop for a living, most of you know that from my prior posts. We act differently than other "normal" people because of what our job expose us to and how we are trained. I mean do you really care if your back is to a door at a restaurant? Probably not a deal breaker. For us, big issue. Those kinds of things. So I'd probably point out some of the weird things I do in public because of my law enforcement background. Then it would probably transition to "I know I am different because I was trained to be. You may feel different, but that is because you were born with a different way of thinking than other people. The way you think is known to others as Autism." That begins the questions.

You know the level you need to speak to your child on. Their "maturity" level as its called. Try to explain it in a way that is easily repeatable to their friends, if they are verbal, but make it clear they don't have to tell anyone if they don't want to. Welcome their questions with an open heart and open mind. If you don't know the answer don't make something up. Ask them what they think and if they don't know, then take it upon yourself to find out for them. Tell them you'll look it up or ask. Don't be afraid to show your humanity to your child when you are reminding them how human they are. You are not superior, you are experienced, there is a difference in the delivery and that is true for all situations, not just parenting.

Older children may have an idea of what Autism is. They may already have associated it with being something negative. You will have an interesting set of challenges as a parent in this situation. I still believe they should be told, but don't be surprised if they don't want to talk about it right away. Respect that space. Tell them you want to talk about it and answer their questions. Enforce that this is not who they are, its just part of who they are. Remind them no one is perfect, and this is a hurdle that they will overcome in their life. But above all remind them they are not alone in this. You are there for them. Let them come to you when they are ready. They may do some research on their own at first. Never demean them from doing that, instead applaud them for their maturity and for educating themselves. Engage them in the topic they present, be honest and sincere, but not judgmental. Unless you have Autism, you are limited in knowing the full extent of Autism. I can research Autism, write this blog, live as a mother to a child with Autism, cry with him, hurt with him, and fight with him, but I can not be him. I cannot live his life. As much as I may wish to jump into his head for one day, I can't.

Remember to think about how you're going to deliver this information to them. How you tell your child about their diagnosis will set the tone for how they feel about themselves. The diagnosis is not a definition of who they are. When people ask your child to describe themselves, what would you want them to say? Autistic is not what I want my son to say first, if at all. Autism is just one part of who he is. For other parents, especially with those who have low to moderate functioning loved ones, they may want their child to introduce themselves and immediately volunteer the fact that they have Autism. This is a safety concern I understand and advocate for based on the individual.

This is just my opinion on this topic. Some others may feel differently than I and that's ok. As always, we here at Aiden's Heroes are here for you.

My Husband, My Hero

It's occurred to me I've never said thank you. I've never told you how much I appreciate you. I've never said it and I need to. I should have before now. When things got tough, you stayed with me. You've held my hand when I've cried. You listen when I'm angry. You make me smile when I don't want to. I don't know if you do this because you know how or just because you can. Yet, through all my meltdowns you love me. You love me when I'm flawed, you love me when I'm weak, you love me when I'm scared, and you love me when I just need a day in sweatpants. Thank you.

Thank you for making me feel like I'm more than any other woman. Thank you for letting me shine. Thank you for being my dose of reality in life. Thank you for music-less dancing. Thank you for goofy song lyrics. Thank you for long talks in the car. Thank you for kisses before leaving for work. Thank you for surprise love letters. Thank you for doing the dishes the other day. Thank you for the microwave meals and frozen pizza dinners. Thank you for being the saver, not the spender. Thank you for never yelling at me when we disagree. Thank you.

Thank you for fighting when I can't. Thank you for laughing when I won't. Thank you for finding the words when I can't think. Thank you for your prayers. Thank you for thinking of me. Thank you for picking up where I leave off. Thank you for letting me explode. Thank you for putting me back together. Thank you for enduring the fire of my personality. Thank you for kindness. Thank you for understanding. Thank you for support. Thank you.

Autism is genetic in my family, yet during our financial struggles, therapy arguments, and misunderstandings you've never blamed me. You've never accused me of being the cause. I've never said thank you, because in my few weakest moments, I do. I do blame myself and somehow you don't care. Somehow you love me despite my flaws. Somehow you love us unconditionally. Thank you for love I've never known. Thank you.

You're my husband, my hero, and I love you.

How the System Failed my Family

I'm going to take a moment to talk to you personally. I don't do this much, most of our articles are very educational in nature, but I need a break from research. I just want to be human right along with you if that's ok.

Over the last few months I've been coping with the reality that no one out there wants to help us. What do I mean by that? Well it all started with the public school system. Aiden was involved with a government program here called Early Steps. Part of the services Early Steps offers is called transition. In transition they set up a IEP meeting with your local school system to determine if your child qualifies for services through the public school system. The school system representatives informed us that Aiden does not qualify for an IEP based on his intelligence. They, in all their wisdom, made the determination that there is not an "educational" need for Aiden to receive these services. Now, the school system will gladly accept the medical diagnosis to get the addition money the receive from the government, but they will not give my child the protective contract he needs to ensure a successful educational career. You didn't know that the schools are paid for "special needs" kids? Yep, they surely are. The McKay Scholarship, here in Florida, takes that money away when the school fails your child. The school did say he should have a 504 plan. Which is a step down from the IEP and its not binding. I informed them of his sensory struggles, but that didn't seem to matter.

We then went and filed our tax return. I found out that amount of money we had paid out of pocket for doctors and therapy expenses did not meet the threshold necessary, according to tax code, for a credit. I was floored. We had been paying so much money, but it wasn't enough.

After that we attempted to secure secondary insurance for Aiden through Florida Kid Care. We have primary health care through our employer, but you have the ability to secure secondary insurance through another agency. One of the things Kid Care advertised that they offer is secondary insurance through Medicaid. However after Aiden was denied coverage through Kid Care (because he has insurance) we were told Kid Care does not actually forward applications to Medicaid. So my brainiac question was why does it say you represent them on your website? They informed me that their website does not advertise that information. A lie. You can go to their about section and see the information for yourself.

After our let down with Kid Care we reached out to the SSI department. We applied and went into the meeting. First of all allow me to explain a few things, to be fair. My husband and I are both employed. He is full time and I am part time. Now you'd say why aren't you full time? The answer is simple, we cannot afford daycare for our kids. Part time day care costs the equivalent of our mortgage payments, monthly. There is no possible way for us to swing that and it won't cover weekend work hours. That is why I am part time, but I easily put in about 30 hours a week at work, while I am there. So with that explanation in place, my husband and I were only coming out ahead about $200 a month, at best. Aiden's medical bills cost us about $500 a month with insurance. When we went for our SSI appointment they only wanted to know two things: 1- What is your gross income? and 2- Do you own anything? They didn't care about our household bills, because electricity is optional evidently. They told me that I could ask for help from Medicaid as a secondary insurance and that is when I broke down.

I have just started coming out of the withdrawal I have been feeling for months now. All the "fight" drained from me. Aiden missed appointments with specialists and I didn't care. Thankfully he is a very healthy little guy on his own. We have been trying to figure out what was causing his constipation, but we have that under control now, and that was the appointment he missed. I was spending money on doctors, therapists, and specialists hand over fist. Every week we had an appointment to keep and we needed help. Help we weren't getting and still aren't getting. My husband picked up two extra work shifts a week and that has off set our need.

This is why I lost it. I didn't feel like I was asking for much. I didn't feel like what I was asking for was out of line. I wasn't asking for my whole family, I was asking for Aiden alone. Just something to help off set the money we are paying for his care. In this country, you have to be drowning in order to get help. We were barely keeping our heads above water and were asking for help. You can only be smacked down so many times before you feel completely drained. Now I'm angry, but I don't know who to talk to about it.

In a sense we are lucky and I know that. Aiden is high functioning and if he weren't we would be worse off, but that is the mind blowing thing. I know people who have loved ones on the lower end of the spectrum and they have had to refinance their homes and take loans in order to pay for medical bills. What is it, exactly, that families in America have to do? I pay money to my government, involuntarily, for the benefit of others. I have met people who draw SSI benefits for things like epilepsy, yet they drive cars. For depression, yet they commit crime. So I fail to see how my request or better said requests are ungranted. And I feel that they escalated in the most proper manner I could think of, from "least" to "most" impactful.

Our story is repeated hundreds, maybe thousands of times, all over the country, by so many more families. Staying strong and present is hard after enduring so much. In times like this its hardest, but most important to remember you're not alone.

Thank you for letting me be human. Thank you for understanding, some if not all of what I am saying. Be sure to follow us on Facebook for the latest updates. 

Relax...Its ok

My son has Autism and my daughter is neurotypical. I have a husband and a job. I run this blog and the Aiden's Heroes Facebook page. I have a home sales business. Among all these things I have to find time to maintain my vegetable garden and stay on top of household chores. Many of you are a lot like me. Many of you have a lot of work on your plate. So you ask how do I find time to relax? The answer is difficult and simple: I make it.

I make time to relax. Sometimes it comes at the cost of house chores or a blog post, but finding time to maintain your sanity is very important. Did you know, according to preliminary findings from the IAN Network, as reported by Autism Speaks, approximately 44% of mothers and 30% of fathers to individuals with Autism have been diagnosed with clinical depression? The study reports that 50% of these cases began before the birth of their child with Autism. That means that the other 50% of the cases came afterword.

Stress is my biggest enemy. I find myself under constant stress and on an almost daily basis. Its tough on me and it makes me, at best, irritable. I know that and I notice when it gets worse. For instance today I am more edgy that usual. So I know its time for me to take time to relax. A 2009 article published by Disability Scoop discovered that, particularly mothers, of individuals with Autism experience stress similar to combat soldiers. What does that mean? Its constant. Its a constant bombardment of input and attempts to regain control of your environment.

Its easy for someone to say "you're the parent, so you are in control", but any parent of a child with behavioral disorders knows better. When you are the parent to a child with Autism you are barely holding your head above water, at least that's how it feels. You are probably more in control that you realize. I remember the first time our ABA therapist said "He listens to you very well". I could only say "Really? Because most of the time I feel like I am barely in control". From the outside looking in she saw someone in control, when inside I feel almost constant chaos. I am sure I am not the only parent that feels like this.

So what techniques do I use to relax?

1- A nice hot bath after both kids go to bed. Nothing clears up tension in my shoulders like a hot Epsom salt bath, Its my best form of therapy by far. To add further relaxation I will turn out the lights, light a few candles, turn on some light instrumental music, and sip a glass of red wine. Sometimes I add lavender and chamomile bubble bath solution for some aroma therapy.

2- Watch a movie. Pick a movie you love or have always wanted to see. There are great places to rent movies or get streaming video. Shut off the lights, pop some popcorn, grab a box of chocolates and enjoy some entertainment. You can do this after the kids go to bed, or you can do this while the kids watch their own movie in another room. 

3- Splurge every once in a while and treat yourself to a full body massage. Massage is commonly avoided by most people since it seems frivolous. Actually massages, for the money, are well worth the cost. Most are only about $60-$75 for a whole hour. When you break that down per minute its well worth the experience. In fact, there are many health benefits to be gained from professionally administered massages. I have had a few in my lifetime and I think its terribly important to do so annually, at minimum. Ask for it for your birthday, Christmas, or other holiday. Family members will give you gift cards or certificates for massages. And you don't have to be naked during a massage, if that makes you uncomfortable! 

4- Have an at home date night. Its so important for parents to stay connected. An at home date night can do just that. Eat snack size meals throughout the day, but cook a beautiful dinner at home. You can do so together if you would like. Turn down the lights, add some candles for a romantic ambiance, and put on some instrumental music. Or build a living room tent and watch a movie under the sheets. You don't have to spend a lot of money to keep the spark alive or to open the communication lines. Here is a great link for more ideas.

5- Read a fantasy, fiction, or sci-fi novel. Why? Its unrealistic, adventurous, and does not engage your overworked mind with lots of information. Instead these novels stimulate other parts of your brain and don't overly tax your thought processes. Its important to read things off topics that stress you. Work for instance, don't read books about what you do for a living or about Autism, in an effort to relax. You may thwart your efforts. I am not saying don't read to educate yourself in your profession or about health care issues, please do, but if relaxation is your goal I suggest reading something off topic. 

6- Craft. Crafting is fun, budget friendly, and joyful. I scrapbook, knit, loom, and paint to relax. I find all of these things enjoyable and easy to do any time of the day. I also love to write, though its not crafting, writing is a creative process and allows for a release. Below is a photo of a horse I knitted recently.

Do not deny yourself time to relax. It is extremely necessary for you to momentarily remove yourself from the world around you and do something calming. Always remember it is ok for you to pay attention to yourself. It is not only beneficial for your health, but the health of your family too. How can you care for them, if you do not care for yourself?

We are always here for you at Aiden's Heroes. Need a topic covered that you haven't seen yet? Post to us on our Facebook page, Aiden's Heroes, with your ideas! 

Communicating with Autism

A friend of mine approached me the other day and told me his adult son is dating a woman who has a child with Autism. He said the boy smiles when he sees him, but the boy doesn't say any words. He doesn't verbally stim (make loud noises) and is very calm. My friend told me that his son describes the boy as "being trapped in there". My first remarks were the boy is obviously intelligent. I suggested my friend's son get on the internet and print out a few small pictures of different things. He then should affix Velcro to the back of the pictures and Velcro strips to a piece of construction paper. When he sees the child, he can pull out this communication board and ask the boy a question. The child can then respond by placing the appropriate picture on the paper. That would be a good and inexpensive way for the two of them to communicate. My friend seemed excited by this information and he said he would talk to his son about this idea.

Verbal or non-verbal? Communicating with individuals who have Autism is dependent on their functioning level. Did you know approximately 25% of the Autism population speak few to no words (SFARI)? So how do you communicate? Some individuals with Autism communicate through sign language. To see more information on that topic please visit my blog, Cross Disability: Hearing Impairments and Autism.

I want to tell you about the different ways you can communicate with your non-verbal loved one. If, during the course of this blog, you find I missed one, please place a comment in the comments section on how you do it! We are here to help each other. That being said, please don't give up. If some of these suggestions do not work for you try something else.

So what is this I-pad business? The iPads have been a revelation in the world of Autism communication. I met a little girl at our therapists office, her name is Lily. Lily is completely nonverbal. She is such a sweet and curious child and all I want to do every time I see her is give her a big hug. Lily and I connected the first time we met, when I stopped her mid-tantrum by showing her a butterfly puzzle piece. I asked Lily: What is that? What colors do you see? How many wings does that butterfly have? Her grandmother wasn't sure at first why I kept talking to Lily. "She's nonverbal" she said to me. "I know" I said. That didn't stop me from talking to her and asking her questions. Lily sat with me. She began feeling my pant leg, engrossed with the texture of my jeans. "Don't touch her" her grandmother corrected. That made me sad. I wanted her to explore. It didn't bother me that Lily was touching my pant leg, she wasn't hitting or pinching, she was curious. Lily has an ipad with an app on it called Proloquo2Go. This wonderful little app talks for her when she selects a picture.

So why the long, drawn out story? I tell you about Lily to caution you about limiting your children. We, as Autism parents, are so scared that our children are going to offend someone that we over correct. I am guilty of it too, so I am not casting stones at Lily's grandmother. Temple Grandin says they will never learn to speak for themselves if you speak for them. That is why I talk to Lily like any other child. I had tuned into Lily and she knew it. Think about the surroundings in which Lily and I met. We were at a therapist's office. I had my daughter in the waiting room with me and we were playing with a puzzle. The chances of Lily imposing on me are significantly lower here than if we were some people sitting in a food court at the mall. Ask people. I look at people Aiden is interacting closely with and ask them "Is he ok?". I usually get a big smile and "yes he's fine". I let it go until I see a behavior that needs to be corrected.

The iPad has many more apps on it that can help you and your loved one with Autism. Look into these options if you can. I love the iPad, but they are so expensive I don't have one yet. Try finding a refurbished iPad, instead of buying new. This link is so important. It tells you how to get an iPad for significantly reduced rates or even for free. Please click here for more information: Wonder Baby.

So you don't have money for an iPad. What else can you do? Like I mentioned above, construction paper works wonders. You will need pictures you either create or print of different things, like food, emotions, favorite toys, etc. You will also need Velcro, scissors, and construction paper. Cut the pictures out. put a piece of Velcro on the back of each one. On the construction paper put a header, something simple like "I want" or "I feel" then put strips of Velcro on the paper. The child can select their picture and stick it on the construction paper. You can even use file folders with Velcro on them or attach the boards with a ring or in a binder for organization. You can purchase pre-made boards on the internet as well.

Activity Binder

The other suggestion I can make is one I saw on Netflix, I believe it was A Mother's Courage: Talking Back to Autism. In this documentary a woman in search of a way to communicate with her low functioning, non-verbal son, Keli, she meets a therapist whose son is also nonverbal. The therapist teaches Keli to speak with a letter board, which is really nothing more than a stencil. She has them point at the letters with a pencil to spell out words, but some children use their fingers just as easily.

Another form of communication I have seen is demonstrated by Carly Fleischmann. Carly types on a laptop that speaks for her. Its a sort of blend between a letter board and the iPad. You can watch Carly in action in the video below, but grab some tissues. 

The most profound thing I have heard someone say came from one of Carly's therapists "She started to realize that by communicating she had power over her environment". We take our communications for granted. We communicate and have power over our environment. We see this in our children when they learn to turn on and off light switches. Its exciting for them because they realize they control their environment. Help your child control their environment, look for ways to communicate with them. Remember, always remember, being non-verbal does not mean unintelligent. 

Good luck to you all on your journey. Please follow us on Facebook and Pinterest!

He Won't Eat

He won't eat anything I give him" my husband said to me yesterday. "He won't even eat the sliced apples I buy. I don't know what to feed him" he said. I began thinking. One of Aiden's favorite meals used to be chicken nuggets and french fries, and he gets that at least once a week in our runs back and forth to therapy. He also used to down pizza and hot dogs, but not anymore. In fact Aiden has almost completely cut out all meats on his own. This trend is one my husband and I have noticed increasingly over the last few months and are stumped by. What is it? Is his diet changing? Is he vegetarian?

I began scouring the internet, as I always do, searching for scholarly articles on the topic. I learned the difference between picky eating and selective eating disorder, which I am sure he has a little bit of, but not in a debilitating sense. At least not enough to cut out meats. Along with this meat aversion he also has complained about his stomach hurting. We have had a bought of constipation this month, which I think we pretty much voided this week. Today he said it again. I was beginning to think its because he wasn't getting enough to eat.

Now Aiden is a little skinny guy as it is. So for him to cut calories on his own is alarming to us. Obviously he is only 3 so there is no chance of any body perception issues to speak of, which may concern me if he were older. "All he wants is pickles, chips, and cookies" my husband said, completely frustrated with the food situation. That is true. Aiden always asks for chips, pickles, and cookies. That is exactly what he eats and refuses most everything else. Today I was determined to get food into him, particularly something with meat. I made bacon, his absolute favorite meat, ever. I also sliced an organic apple, gave him some baby carrots and a pickle. Aiden loves pickles.

To my surprise he ate it all. All 5 slices of bacon, 4 slices of apple, handful of carrots, and the whole pickle. So what was going on here? Back to the internet. I searched for everything under the sun, meat aversions, child refusing to eat meat, is my child vegetarian, etc. I was looking for any tidbit of information that could send me down the right path, but I couldn't find anything but health warnings. So I sat and thought. I thought about it for some time. What is it? As my law enforcement training has taught me to do I branched out from what I know. I began running interviews in my head and came to my mom. My mom always talks about how well the kids eat for her. That got me really thinking, what does she do differently?


The answer hit me. I felt like smacking myself it was so simple. Aiden doesn't have an aversion to meat; he has an aversion to processed foods. Aiden will eat the heck out of baked chicken I make in the oven, but doesn't want any more chicken nuggets. Aiden can annihilate a few slices of pizza, but he won't eat the pre-packaged, frozen kind. His tastes are changing, he no longer wants the easy stuff, he wants "real" food. Its even come down to him refusing to eat the pre-sliced, pre-packaged apples, he wants a fresh apple. His stomach hurts because he is hungry, His constipation and GI issues are, at least partially, from aggravation of the GI tract. DUH!

vs.

We give our kids processed foods because its quick and easy. Its laziness on our part as parents. I'll admit it, I have been lazy. Our society and culture here in the US is so fast paced, so get up and go, that we have made packaged foods part of our literal every day lives. The food market has picked up on this and have made fresh foods ridiculously expensive. Have you ever noticed hamburgers on the dollar menu and while salads are $5.00? Weird, since salad is all grown from the earth and really doesn't take much maintenance. A head of beef has to be "grown", but that takes a few years, vet visits, feed costs, upkeep, stabling, and eventual slaughter. Plants are relatively easier, though I am sure there are maintenance costs associated with them, and they don't take not nearly as long to grow.

My son is telling me to stop being lazy. I mean honestly, how hard would it be to bake a bag of chicken on Sunday for the whole week? Cost effective is another thing entirely. I used to maintain a container garden, maybe its time to pick that up again to off set expenses, and its something I'm sure Aiden would help me do.

They say that to raise a child with Autism you must listen with your heart. I find myself doing this more in my every day life and in my career. Listening with your heart is an acquired skill. It does not mean listening with emotion, no. It means listening with care. It means opening your mind and letting it sink in. I have not been doing that lately when it came to Aiden's dietary needs. I thought food is food and that was my mistake. I like to cook, its something that is fun for me to do, so shame on me for neglecting that part of my life for the matter of convenience. 

 So the time has come for our trip to Lowes. I will document our container garden and let you know if my heart was right. 

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Autism and Memory

We had an incident today at home and I was stunned with how much Aiden struggled with his short term memory while trying to accomplish his task. Aiden has a co-diagnosis of Attention Deficit Disorder, which I always attributed to his memory struggles. Never the less I wanted to know if there was a connection between memory and Autism.

There are three major types of human memory: Sensory Memory, Short-Term (aka Working) Memory, and Long-Term Memory.

Sensory Memory: Probably the easiest to explain, sensory memory is also the fastest type of memory to occur. Do you remember the first time you badly burned yourself while cooking? You probably do, I know I do. I still have the burn scar on my arm from the incident. Sensory memory contributes to that. I remember what the burner feels like when its hot, that is sensory memory.

Short-Term Memory: You use your short term memory every day, multiple times a day. When you read, your brain has to remember the first part of the sentence to make sense of the rest of it. That is what short-term memory does.

Long-Term Memory: Long-term memory is what you immediately imagine when you think of the word memory. What is your favorite childhood memory? When you recalled that memory on my prompt, that is long term memory in action.

So how are memories made? To make short of the details memories are made by the intake of sensory information, which creates a biological reaction. We determine if the information being relayed to us is a long term or short term need. The repetition of short term information can cause a long term effect and the more emotionally involved we are in an incident will cause the short term replay to continue.

So how does Autism impact memory? At the beginning of this year SFARI published an article about a study from the journal of Development and Psychopathology. In this study researchers studied 63 children with Autism and 63 controls. After 3 days of memory testing children with Autism were found to need more prompting to remember events. Researchers found that both the control and those with ASD began forming memories around the age of 3, but those with Autism retrieved fewer memories than the controls. The memories they did recall contained fewer details than those of the controls. Emotions have link to memory and older children in both groups had more emotion when recalling memories, though those with Autism displayed less emotion than controls. This is important because autobiographical memories connect people socially, If individuals with ASD have difficulty with memory they will disconnect socially.

But I thought kids with ASD were savants? Some of them are. Time Magazine published an article, What Genius and Autism Have in Common. Its a very interesting article and explains that savants have great working memory. The average human can recall about 7 digit sequences in their short term memory. Savants and prodigies can hold much more than that allowing them to hold the information in their minds and keeps it available for further processing. The article goes onto describe that prodigies share traits with high functioning Autistics and actually have a tenacious attention to detail, even more so than those with Aspergers.

Does that mean everyone on the Autism spectrum have amazing short term memory? No, remember everyone is unique. Temple Grandin gave a speech in 1999 on the topic of choosing the right job for those with Autism. She specifically discusses her struggles with short term memory, in stark contrast to the excellence of her long term memory. She is just one individual example of the differences between those with ASD. Remember, if you have seen one child with Autism, then you have seen one child with Autism.

Here are more articles to help you understand Autism's effect on memory:
American Psychological Association: Children with Autism Found to Have Specific Memory Problems
Psychology Today: Early Memory and Autism

Autism and Sports

"The measure of who we are is what we do with what we have." -Vince Lombardi

So I ask you, how can we know what they can do if we never let them try? This is not just true in sports, but in all things. Vince Lombardi has always been a source of motivation and inspiration for me. He is by far one of my favorite sports icons. I have been in sports in one form or another for over 20 years and have been thankful for every moment. When Aiden was diagnosed with Autism I did what most people do, I wondered what he would not be able to do. One of the things I thought is: "Will he ever be able to play sports?" As I have gone on this Autism journey, with the best guide I know, I have changed my thinking to: I wonder what he can't do. 

"Sports do not build character. They reveal it." -Heywoood Broun

Sports have an amazing ability to be not only healthy, but therapeutic. Physical activity releases neurotransmitters in the brain that help promote positive thinking and behavior. Ever meet a happy, positive, motivated person and wonder what their secret is? Ask them if they exercise the odds are high that they do. The social interaction involved in sporting practices can be some of the most beneficial side effects of sports. The healthy benefits of exercise are raved about in many articles, stories, and studies. Those same benefits apply to your loved ones with Autism.

In 2012, the CDC estimated that one third of children and adolescents were overweight or obese. The childhood obesity rate has doubled in children and quadrupled in adolescents in the last 30 years, also according to the CDC. But lets not stop there. In 2013 SFARI released an article, In Autism, Obesity Starts Early. According to the journal Childhood Obesity, more than 30% of children with Autism are overweight or obese. 

"Play is the only way the highest intelligence of humankind can unfold." -Joseph Chilton Pearce

So what can we do? We can expose them to sports and exercise. One researcher who conducted a study of professional athletes indicates that an estimated 15-20% of professional athletes have Attention Deficit-Hyperactivity Disorder, a common co-diagnosis of Autism. He further goes on to say that many pro athletes with undiagnosed Asperers excel at technical sports positions, like pitching, surfing, martial arts, and running. You can find his article here: Athletes with ADHD and Autistic Spectrum Disorder. Lets name a few pro athletes with ASD- Jim Eisenreich (baseball), Clay Marzo (surfing), Jessica-Jane Applegate (swimming), and Todd Hodgetts (shot-put).

Those athletes are high functioning. What about lower functioning ASD? There are sports and exercises available to lower functioning individuals on the spectrum. It maybe hard for them to play complex sports with lots of rules involved, but what about individual sports with less rules? The Schneider twins are runners with severe Autism and are non-verbal, but they run marathons! Not alone of course, they run with coaches who monitor them and guide them through the course, but these kids love to run. 

"When the going gets weird, the weird turn pro."- Hunter S. Thompson

So what sports can kids with ASD play? Any of them! You have to be realistic with their functioning level and their physical capabilities. For the lower functioning levels consider more individual sports such as running, rock climbing, and horse back riding. Please be sure suitable supervision is provided while they are participating in these sports. Other sports available to those on the spectrum include: baseball, basketball, martial arts, biking, bowling (as long as they can handle the noise), swimming, etc.

I want to leave you with this: Do not be your child's limitation. Let them try things. Athletes are some of the most accepting people I have ever had the pleasure of interacting with. Good coaching staff will lead the way to acceptance of your loved one. 

Here are some links to help you understand sports impact on Autism and helpful organizations:

Activity Leaders and Sports Instructors: A Guide to Autism

Extreme Sports Camp- An Athletic Experience for Autism

Athletes for Autism

Autism Youth Sports League

Autism Speaks- Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism

We hope you have enjoyed this brief introduction to sports and Autism. Sporting is a personal choice and the type of sports your family chooses to participate in are as individual as your athlete. Do not get discouraged, broaden your horizons. Find what they love and go for it! 

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Autism Across Cultures

There is no doubt we live in a diverse world, full of many different cultures. So how do these different cultures handle Autism?

I found a great deal of information on this topic as I conducted my research. SFARI released an article in 2013, Mild Traits of Autism May Shift With Cultures, Study Says. A team of researchers began comparing children in the UK and Finland. Their findings were published in Autism. Using the DSM-5's diagnosing guidelines the researchers were amazed how similar children with ASD presented in their study. Researchers compared the mild traits, also known as the BAP (broad autism phenotype), and found that Finnish children do not follow the DSM guidelines. Researchers believe this could be due to the difference in language, culture, and genetics of the Fins vs. those in the UK.

Cultures vary greatly in language, behaviors, and interpretation of behavior. I address examples of these behavioral differences in my blog about Social Prompting. What the SFARI article shows us is not all countries interpret Autism the same way, but there are striking similarities between children with Autism around the world. An example of this is eye contact. The proper length of eye contact differs across cultures. For instance, in some Asian cultures it is considered rude to look someone in the eye, while Americans find it odd or even disrespectful for someone not to look you in the eye.

Another article published by SFARI in 2011, Researchers Track Down Autism Rates Across the Globe, discusses a huge cultural issue in the opening paragraph. In South Korea, some families go to great lengths to avoid an Autism diagnosis. That culture considers Autism to be a genetic mark of shame and impacts the entire family. To hide this they usually push for a diagnosis of Reactive Detachment Disorder, and only shame the child's mother, sparing the rest of the family. Archaic, yes, but try to push past your impulse to be angry and consider it in the context of this blog. That information tells me that this culture needs more Autism education, which is ok, after all at one point in our lives we were not so educated in Autism. Since it is a fact that only approximately 15% of Autism cases are genetically caused, it can be safely assumed that many people are being blamed for something out of their control in that culture.

In fact the US, Canada, and the UK lead the rest of the world in mental health medicine, awareness, and prevalence studies. One professor from China admitted in the SFARI article that Autism is still a new topic in many places around the world. Prevalence of Autism studies in other countries will help those countries develop government and non-profit programs to benefit these families. The problem is not just abroad. In the US the states with the highest prevalence rates are also the states with the best health care and support services for Autism. Those states include Arizona, Missouri, and New Jersey; while some of the fewest services and lowest prevalence rates are found in Alabama, Arkansas, and Florida. I find that for being so prevalent in the US, in fact 1 in 68 are diagnosed with ASD, there is so little Autism education in all levels of school, government, and among the general public.

Culture impacts many aspects of our everyday lives, sometimes without us even noticing. Autism Gateway published an article about Cultural Differences and how those differences impact Autism. For instance, they cite the difference between Puerto Rican mothers vs. white mothers. Did you know that Puerto Rican mothers, mostly, expect their children to be potty trained at an earlier age than white mothers, but white mothers expect children to be able to name colors at an earlier age than Puerto Rican mothers? That is one example of a cultural impact in everyday life.

Their study also found that different cultures notice different Autism cues, more than others. For instance Indian parents are more likely to notice socialization speech delays and American families are more likely to notice general development delays or regressions in language. Cultures accent what is important to them, and we, being part of a culture, will accent those important aspects in our minds. So do American families value language and development more than Indian families? Not always, but as a collective culture this maybe very true. Think about it. I am American. If someone came to me and asked: "Which is more important development or socialization?" I would answer development. That does not mean I don't value socialization, but I don't consider it as important as development, so I will not accent it as much as I would development. Please don't misunderstand; this is not a bad thing. It is just my culture.

Also in relation to Autism is the cultural acceptance in the recognition of ASD symptoms and how they are attributed. For instance, this study found that Asian/Pacific and African American parents are less likely than white parents to accept that their child's behavior is indicative of an underlying disorder. This delays the diagnosis of disorders and as we know Autism needs early intervention for the greatest chance of success.

So how do we help? First we have to bridge the gap. Did you know that non-English speakers are less likely to be diagnosed at an early age? That did not surprise me. This suspicion is what drove me to begin translating my blog posts into Spanish and allow this blog to also be translated into Russian. Our teachers and clinicians have to adopt these tactics as well, providing foreign language speakers with appropriate information on this topic. The Massachusetts Act Early program has designed many free materials to help in many different business settings. As always we need to focus on better insurance benefits, non-profit programs, and government programs for these families, our families. We have to push for better education in the school system. Its awareness. Only after educating can we raise awareness among the rest of the population and impact our cultures in a positive way.

For more information about the cultural impact on Autism, please read these articles:
The Impact of Culture on Autism Diagnosis and Treatment
Autism Consortium: Cultural Considerations in Autism Diagnosis

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Autism and Toe Walking

When I searched for information on this topic I was overloaded with information. Toe walking is hugely common in kids with Autism and I wanted to find out why.

First, what is toe walking? Toe walking is when a child or individual chooses to walk on the balls of their feet and toes, as opposed to using the whole foot while walking. When humans walk we typically strike the ground first with our heel then roll forward to the toes, using the whole foot to walk. Toe walking in young children and toddlers is quite common among typical children. In fact, Health Day, sites that as many as one in 20 children will toe walk in their early childhood. An interesting fact from the Johns Hopkins Children's Center states that approximately 70% of children who toe walk have at least one family member who also toe walked as a child, indicating that toe walking is hereditary. Usually toe walking will disappear in neurotypical children. If toe walking persists past the age of five doctors will usually consider it as a sign of neurological immaturity, according to the Autism Research Institute.

Toe Walking Video

In 2011, SFARI published an article siting research published in the Journal of Child Neurology. This study showed of 954 children referred to a developmental clinic showed that 115 were persistent toe walkers and 75 were toe walkers due to tight heel cords. The toe walking was higher in the subset of children who had ASD. In that subset group of 324 children with Autism, 65 were toe walkers and 39 were toe walkers due to tight heel cords. Therefore, these researchers conclude that children who walk on their toes are more likely to have Autism than other forms of developmental delay disorders, such as cerebral palsy. Toe walking is also seen in CP. They conclude that children who do toe walk beyond an appropriate age should be tested for Autism and children with Autism should have their walking gait studied and if necessary participate in physical therapy to alleviate walking difficulties, like toe walking. 

This brings us to the causes of toe walking. There are a few reasons why your loved one maybe toe walking. Autism is not a cause of toe walking. Toe walking maybe a symptom of Autism, but not in all cases:

• Tight Heel Cords: As discussed above, toe walking maybe due to tight heel cords, or Achilles tendons. The Achilles tendons connect your heel bone to the bottom of your calf muscle. Children with Autism, who toe walk, have a difficult time with the range of motion in their ankles and typically cannot rotate their foot past a 90 degree angle. A physical therapist can assist you and your loved one with tight heel cord issues. Through a series of stretching and exercises they can help to correct this issue. 
• Short Achilles Tendons:  This is something that a child is born with. Their Achilles tendons are shorter than average, which causes them to toe walk. I could not find the average length of a normal Achilles tendon. All my reading suggests that the length varies per individual and is genetically predetermined. Sometimes this issue can be corrected with braces and if not surgery can correct short Achilles tendons. 

• Sensory Processing Disorder: The nerve endings on the bottom of your feet are very sensitive. Some toe walking, without physical contributions, such as tight cords, may be due to sensory processing disorder. To cut down on the overload of input from the nerves in this area a child with Autism may toe walk. If there is no medical explanation for the toe walking consulting an occupational therapist on this topic maybe helpful. 
• Hypertonia: An interesting blog on Williams Syndrome described the muscular condition hypertonia as a toe walking cause. Hypertonia is the exact opposite of hypotonia, and is described as high muscle tone. High amounts of muscle tone in the calf muscles may pull up on the Achilles causing toe walking to be prominent. 
• Vestibular System: Dysfunction of the vestibular system, common in Autism, may be responsible for toe walking. Found in the ear, the vestibular system is responsible for relaying information to the brain about the bodies position in the world around it. The vestibular system also relays information about body movement. A disruption in this function maybe responsible for toe walking and can be addressed by your doctor. 

• Other Disorders: Sometimes toe walking occurs in other disorders such as cerebral palsy or muscular dystrophy. Both of these involve muscle tone concerns, which is also seen in Autism. 

For more information on toe walking, please see these articles:

eHow: Achilles Tendon Lengthening Procedures

HubPages: Tip Toe Walking and Autism

Mayo Clinic: Toe Walking in Children

Autism and Listening Skills

Something happened today that provided me with inspiration for this blog post. Aiden, my 3 year old son with ASD, wanted to play his video game. I know, most parents would refuse to let their child play video games at this age, but Aiden is not a typical child and I am not most parents. So, after completing his learning activity for the day I allowed him to get on the game. He loves to play Lego Marvel Superheroes. Aiden can turn on the Xbox and TV by himself, sign in, and start the game all on his own and has done so many times. This time Aiden pulled the TV remote out and placed it on the table. Evidently he forgot that he had done this because I observed him searching for the remote, after he turned on the Xbox.

That is where the problem began. I told Aiden four or five times the remote controls location, but it did not stop his search for the right remote. I caught myself getting frustrated and by the fourth time I was barking the same statement at him. It seemed to finally click. He grabbed the remote, sat down, and started playing his game. I sat and thought to myself, why was that so hard. I remembered my brother struggling with the same behavior as a kid. My mom used to make him look at her and she would repeat the instructions twice and then make him repeat what she said. This is not the first time I have seen this behavior in Aiden and I'm surprised it is the first time I have picked up on it. I know Aiden can hear. He demonstrates his hearing ability very well; even when he is playing his video game he will do what he is told, without repetition of the command. So what is it?

This question sent me on a crusade to find an answer.

Selective hearing is a common problem in Autism from what I have found. First let’s briefly explore how we hear.

Did you know that your ear is the only mechanical sensory organ in your body? Weird, but all the other senses require chemical reactions to happen, but not your ears. When sound reaches your ears it is caught by the pinna, that is the outer most part of the ear that you see. It’s the part we pierce and strap our ear buds to. There you learned at least two new things today, I know I sure did. So the pinna funnels the sound into your outer ear and down the ear canal to the ear drum. The ear drum vibrates as the sound passes into the vestibule and cochlea. The cochlea forces the sound through liquid for the first time. The small bones in your inner ear (yes there are tiny bones deep in your ear) amplify the sound. The cochlea translates the vibrations into electrical impulses that the brain decodes. Cool huh?

How Hearing Works

The Listening Center published an interesting article about Listening Training for Children with Autism that was presented at the 2004 AutismOne Conference. The researcher told a story about one mother's frustrations with her child's inability to hear, which prompted a hearing test that the child passed. As any parent would be at this point she did not know what to do. The researcher explained four critical areas of hearing: attuning, protection, the ear of the body, and the ear and the voice. 

Attuning is the listening ability that allows us to focus on the sound messages we need and leave out the ones we don't. This function is a large part of the receptive language function of our auditory process and is a struggle for those with Autism. 

Protection is the process in which we tune out background noise, and is something that individuals with Autism struggle with, especially children. Since those with Autism cannot selectively block out what they do not want to hear they block out everything, which is a barrier we have to penetrate in communication. 

The Ear of the Body makes reference to the other operating systems the ear controls. The ear also controls balance, sense of space and gravity. The function of the ear also controls a base for our body image awareness and motor planning. There are theories that in order to communicate with other people we must first be able to communicate with ourselves. This theory drives the explanation that those with Autism cannot communicate with themselves due to a break down in the ear of the body process and that contributes to the lack of communication.

The Ear and the Voice represents a breakdown in the ear-voice feedback loop. When you talk you hear your own voice. Researchers theorize that when a child with Autism speaks they are unable to control the way their voice presents itself, loud or soft, course or gentle, etc. Therefore the individual with Autism will not recognize the voice they hear, despite making the voice themselves. This causes a breakdown in communication.

Does this mean our children with Autism can't hear? No. Not at all. In fact they prove to us time and again they are listening. It seems with our children selective hearing strikes more frequently due to sensory overload. 

I read a 2009 article from Positively Autism, written by a school teacher who specializes in Autism. She tells the story of a teacher in the first grade reading The Wolf and the Goat from Aesop's fables. One of the children listening to the story is Autistic. He seemed to look around the room and briefly at the teacher. His behavior during the story would indicate that he was not listening. So the teacher called on him and asked if the wolf saw a goat, to which the child repeated the word goat. Now we are all very familiar with echolalia in Autism. So the teacher asked the students to draw a picture in their journals about the story. She went over to the child with Autism and asked if he wanted to draw a goat or a fox. The little boy looked at her strangely and said "No. Wolf". The teacher had not realized her mistake in changing the fox to a wolf in her question and knew then that the little boy was in fact listening to her story. With no prompting the boy drew a picture of the wolf and the goat in his journal. 

Aesop's Fables

So if they are listening, then what can we do to help them listen better? Well, that answer is not so simple. In my search I also read a 2013 article from SFARI about listening devices helping children with Autism. It cites a study that found 6% of children with hearing problems also have Autism, compared with 1% of the general population. It also cites an October study in the Journal of Pediatrics found that wireless radio frequency listening device helps children with Autism hear teachers talk and may improve their social interactions and learning. This system requires the teacher to wear a small microphone on their lapel, which transmits their voice to the student's ear piece. Teachers in this study reported a significant positive change in the child's behavior and were more attentive. If your child can ear headphones, it is probably a good indication that this system will work for them, but children who do not like the feel of the earpiece may need to practice with it or find alternatives. 

Other alternatives can include written instructions to supplement oral instructions for activities or picture boards depicting the order of the instructions. For serious concerns please consult an audiologist or an Ear, Nose and Throat doctor (ENT) to rule out hearing loss. You may also consider listening training. There are many types of listening training programs available. Please consult your therapy team for their recommendations. 

Here are more links to help you:

Phonak Listening Systems

NIH: Assistive Devices

The National Autistic Society: My Son Appears Not to Listen in Class

Picture Boards

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Sleeping with Autism

Its a constant struggle to achieve sleep when a loved one has Autism. Either they don't go to sleep right away, they wake up in the middle of the night, or they wake up very early in the morning. We are lucky that Aiden sleeps a full eight hours, but he does not go to sleep until 11 every night. He is put to bed around 9, for consistency sake, but actually achieving sleep is a different story. Aiden sleeps well in his own room, but sleeps significantly better and longer when he sleeps with his parents. So what's the big deal? His little sister goes to sleep every night by 8 and is up twice a night for a diaper change and a bottle until she wakes up around 7 or 8 in the morning. So being a parent to Aiden means you go to bed around 11:30 or midnight, wake up about 4 hours later, and then up again in another 3-4 hours for the day. Needless to say, we're tired and most parents of children with Autism are.

Sleep difficulties occur is as much as 80% of children with Autism, according to Autism Speaks. Many behavioral issues arise when sleep struggles are present. Medical issues may contribute to these sleep abnormalities. Early research studies indicate there maybe atypical development of the area of the brain that regulates sleep in children with ASD. In depth studies are in the process of determining hormonal levels that contribute to sleep, such as melatonin. Other medical issues such as epilepsy,  reflux, anxiety, and depression can also disrupt sleep.

In 2013 Health Day published an article outlining research studies in relation to sleeping and Autism, originally published by the Archives of Disease in Childhood. English researchers analyzed data from approximately 14,000 children born in 1991-1992. Their parents answered questions about their children's sleep patterns from the time they were 6 months old, until approximately 11.5 years of age. Of the children involved in this study 86 were diagnosed with ASD. The researchers found that before 2.5 years of age there was no difference in sleep patterns between those with ASD and their typical peers. However, after 2.5 years of age researchers found that children with ASD sleep approximately 43 minutes less in total, than typical children. This sleep gap tends to shorten as the children grow, until their teens. Researchers discovered the sleep differences between typical children and children with ASD appear to be due to frequent bouts of waking during the night, something parents know all to well. Children with Autism wake up approximately three or more times a night and this only occurred more frequently, in this study, as children aged.

In 2014 Treat Autism and ADHD published an article estimating that 83% of children with ASD are impacted by a sleep disorder. Researchers with the Arkansas Children's Research Institute discovered that approximately 90% of children diagnosed with Autism have methylation impairments. This kind of impairment can change the production of brain chemicals, such as serotonin. Serotonin is a vital neurotransmitter needed to achieve sleep, wince it is converted into melotonin with the help of vitamin D. Approximately 90% of serotonin comes from the gastrointestinal tract and 85% of children with ASD have digestive issues. Vitamin D deficiency is a well known problem in Autism research. Magnesium is also necessary to achieve sleep and sleep maintenance. Children with Autism and ADHD commonly have lower magnesium levels that typical children. For more about Autism and Vitamins, please see our blog on the topic. Unhealthy sleep cycles can substantially impact mental and physical development. Children with developmental concerns have a higher risk of developing sleep disorders.

In 2012 SFARI published an article: Melatonin Relieves Sleep Problems in Autism. A sleep study published in the Journal of Sleep Research found that children with Autism experience less time in rapid eye movement phase of sleep. Lack of sleep can cause behavioral problems and slow healthy brain development. Citing a 2009 study, the article discussed the low levels of melatonin found in the blood and urine of children with ASD. Melatonin is a naturally produced hormone and children with ASD may carry a genetic variant in the enzyme that produces melatonin from serotonin.

So is melatonin the answer? To some yes. We find that when we give melatonin to Aiden at 8pm, he is out by 8:30pm. Which is wonderful until he wakes up at 1am and does not go back to sleep until 6am. Some families do not experience what we do with melatonin. Melatonin for them is the answer that it is not for us. That is a perfect example of the diversity of Autism. But what does the science say?

Melatonin is a naturally occurring hormone in the body. When you start supplementing your body with anything it naturally makes there is a risk that the body will stop producing it. Melatonin is available over the counter. There are warnings when giving children melatonin. Please consult your doctor when considering this option for your child. Also, please read this informative article from America Now: Physicians Warn Against Giving Melatonin to Children.

So what can you do?

• Set a schedule that promotes sleep. Children with ASD thrive on routine. We turn out the lights in the house around 9. Aiden will sit and watch a movie or TV, something calm. 

• Consider burning essential oils like lavender and chamomile around bed time. Some people say it really helps them calm and eventually fall asleep. Also consider putting essential oils on the wrists of bottom of the feet. Here is a link on essential oils. 

• For young children turn on a night light. Consider black out curtains in your child's room. 

• Try a weighted blanket. Children with ASD like the weight and there are deep muscle stimulation studies in relation to the use of weighted blankets. 

• A warm bath can be helpful when incorporated into bed time routines. 

• Be sure the children get a snack between dinner and bed time. Something small and easy to digest, peanut butter crackers for instance. 

Good luck! Sleep issues are always frustrating, but I have been told by other parents with older children that it does get better. 

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