Sunday, November 16, 2014

Parent2Parent Tip #9: Alternative for Sandbox Play

My son mouthed everything when he was a toddler and well into his early school years. It was difficult to find safe alternative ways to stimulate him cognitively through hands-on play without encountering the risks that accompany a child who explores his world by mouthing. I could not risk him putting objects in his mouth that could cause choking or get into his already compromised gut.

Sandbox play is a form of play that offers a multitude of benefits.
8 Reasons Why Playing in the Sand is Good for Kids

However, the possibility of my son swallowing sand was ever present. So, I came up with a safe and inexpensive way for him to enjoy indoor sandbox play.

Find a good sturdy box with a lid (I used a Xerox box). Get 2 or 3-10 lb. bags of instant grits. Pour the grits into the box. Add a few things like scoops, shovels, cups (various sizes, shapes and colors), a couple material scraps or other items that will allow the child to feel the textural differences of a sand like substance rubbed against different items. Be sure to select items that are sturdy and safe for your child to mouth. You may even hide a few smaller toys like a med. sized figurine or small stuffed toy that your child can dig out. Add anything you think your child may enjoy and they will have loads of endless fun and exploration. It's a great activity for a child to do independently and with friends/family.

A really cool and multi leveled idea is to hide building blocks in your alternative sandbox. Your child will have to dig up all of the blocks and put them together.  How cool is that?!

Bricks and Blocks: Toys at Walmart Duplo Sets

Please be sure to supervise your child while they play with their alternative sandbox. After play, replace the lid and put the alternative sandbox somewhere that is out of reach for the child(ren).


Parent2Parent Tip #8: Getting EEG Glue or Paste Out of Hair

Hi everyone! Sorry it's been so long since I've written. I was working on a few other projects and then my son had a couple seizures or something that looked a lot like seizures last month. We've been back and forth to the neurologist, 2 EEGs and 1 MRI. There was one EEG at the hospital and the other was an EEG recorder that my son wore home over the weekend. I must say, my son did remarkably well with wearing the EEG recorder. A little explanation and a little ingenuity and we were off to having a wonderful time. Thankfully both EEGs showed normal brain activity.

The MRI results were a bit of a mystery. For those of you who don't know, my son is a preemie, 28 weeks. The MRI did not show any signs of prematurity, however we discovered that my son's cerebellum is underdeveloped. That would explain his difficulty with motor planning. With that being said, we agreed to look into a couple more things in February. For now, we are going to give him a break from all of the visits and let him return to his happy normal routines. I have not seen any other seizure like activity and have no idea if this is going to be a short term thing or something that we will have to deal with for the long term. I'll be keeping a close watch and praying.

In lieu of everything else, my son also started drooling and having some gut issues. This started about a month before the seizure like activity. We also found that he was a little impacted which is something we've never had to deal with before. Having a short gut, my son is more prone to the opposite. I don't know what the cause is because he has a very good diet. His doctor automatically said that there's not enough green leafy veggies in my son's diet. I so wish these doctors would stop speaking out of a place of assumption. My son has a very healthy diet. He eats more veggies, green leaf and other than most kids I know. I'm still not sure of the cause. We will be seeing a GI specialist in the very near future. What I'm doing in the meantime is making some small adjustments to my son's diet. I've cut out a lot of wheat and wheat based products. He's always been on a high fiber diet because it seemed to help with his gut issues, however, just before my son's 15th birthday everything changed. I don't know, but it looks like he's developed a sensitivity to wheat products. Somewhere in the course of changing his diet and the seizure like activity my son has verbal ability has increased. He's speaking more clearly and he's also responding to questions more readily than ever before. Not to mention that he is starting to say words that I have not heard him say. I totally amazed and thankful for this change, but I have not yet identified the cause. It looks like we will be taking a very close look at a gluten free diet. Onward and Upward on this wonderful road!

My original reason for writing this post was to share a little tip with you guys on how to get the glue/paste/gunk out of hair after an EEG. I'm sure some of you have had to deal with this problem. The tech that placed the leads on my son's head told me that it would take at least 3-4 washings just to loosen the glue. Well, I found a sure fire way to loosen and remove the glue and gunk in little to no time and with little to no pain or discomfort.

Here's what I did:

Removal of glue/paste/gunk from hair.

It can be done in a few easy steps:

1.    Thoroughly wet hair. (if possible, have the child/person hold a clean dry wash cloth/hand towel over their eyes)
2.    Pour a little Skin So Soft (Avon) on all areas where there is glue and/or paste. Gently message SSS into areas to loosen glue/paste. Glue will begin to soften immediately and easily pulls away from hair. (Continue this step until you have loosened all of the glue/paste)

3.    Rinse hair in warm water to remove any residual glue/past.

4.    Apply shampoo of choice (I used baby shampoo). Wash hair and dry.

It is not uncommon to miss a spot or two sometimes. If you find there is an area that you've missed, moisten the area, apply SSS and repeat steps 2, 3 & 4. I was able to remove all glue and past from my son's hair in 15 minutes. That's a far cry better than the original option.

I don't know if this will work with the host of other wonderful sticky items we may find in our kid's hair. I say...give it try and see if it works. This just might be the solution you've been looking for to remove gum, candy and maybe a variety of glues.

Hope this tip works for you. Take care and happy parenting my friends.  


Friday, October 3, 2014

Social Skills: Purpose of Portrayal

I can only speak for myself. As a person who lives on the spectrum, I find most social interactions anxiety provoking, awkward, incomprehensible and excruciatingly exhausting; not to mention at times deeply depressing.

As a child I preferred the company of adults. I read all the time and longed to have lengthy thoughtful conversations about subjects of interest, only to find myself being punished for doing so. In those days children were meant to be seen and not heard, at least that was what I was told. Often banished to my room, I would later be forced to play with children who had no knowledge or understanding of the subjects that I found interesting. I would often shut down and retreat to my inner self.

I can remember thinking of how absurd it was to have children around even though I was a child. Conversations with peers were mind numbingly boring at best. I can't recall ever feeling "childlike" according to that which I've observed in others with exception to having an acute awareness of the lack of power, voice and remedial purpose useful only when appeasing the whims of parental units.

My social tastes have not differed with age. It would be the defining of purpose behind the portrayal of normal social behavior that lead to many years of placing people in certain categories. My interactions with "friends" were limited to them being my students and I their teacher or being my subjects and I their council, at times I took on the roll of their protector...same difference. Relationships were not fulfilling, even so, I longed desperately for human interaction, but continued to struggle with it. Some days I was willing to do anything to have it, even if it meant soliciting attention with gifts.

It was not until my 48th year when I learned to see "friends" in a different light. I learned how to determine if relationships had an equal amount of give and take. I made great strides to connect with people of like interest. These lessons learned come from years of hardships and pain. Unfortunately that is what it takes for some of us and then again, sometimes those lessons are never learned.

Social skills training is greatly needed. Keep in mind that children, even those on the spectrum, look at the examples presented as well as what is being taught. Don't take social interactions for granted. What may come easily to you may be traumatic for others. Take time to know your child and help them develop their own interests while encouraging them to find merit in the interests of others. This may seem remedial, but it is the acknowledgement of the importance of someone other than ourselves that helps to facilitate cohesive interactions.

In a world where attention can mainly be on self there is much benefit to becoming aware of others in more ways than acknowledging spatial integrity.

Tuesday, August 26, 2014

On the Inside Looking Out

I read a few articles yesterday and came across a post that I found to be somewhat disturbing. It made me feel as though invisible...completely outside of the subject even though they were speaking of something that I live with everyday...Autism.

How is it that they can speak so freely about something that is part of us without any regard for how they are affecting us?

Here is the header for the post:

Question of the Day: What do you feel the root causes of autism are? Let us know your opinions

At first I thought the question was simple enough, then I thought how preposterous to ask such a thing. Questions of this nature can and do stir up a wave of controversy. Doesn't the writer know that there is enough controversy about Autism or are they bored and in need of entertainment?

While scrolling through the comments I felt a strange emotion come over me. At first there were feelings of elation for those willing to speak to the cause of learning, accepting, nurturing and building a society that is more open to the ones needing support to navigate this world. A beautiful gesture indeed. On the other hand there were many comments listing various potential 'thought to be' causes of Autism. Some comments were simple and heartfelt, where as others were of a more matter of fact scientific nature. As I continued reading the comments I felt myself lifting as if having an out of body experience. It was as thought I was picked up and set in the center of a these people, watching and listening to them talk about me as if I were not their. I don't think I've ever felt so lonely and least, not for a very long time. I'm tired...tired of watching people pointing fingers, searching for blame with little regard to how they make some of us feel.

You speak as if  we aren't here...just the autism.

At what point and time will people stop talking about a part of us that we cannot change and in many cases do not want to change. Who's feelings are being considered here, ours or yours? I see why there is such a profound feeling of uselessness, worthlessness...nothingness. How else can we feel when people are talking about us and around us, but not to us.

It is not autism that makes us feel this's YOU who make us feel this way. Try treating us with dignity and respect...understanding and and patience. I dare not say treat us in a humane way. That would only be one step up from being tied to a tree and beaten. Some of us know what that feels like.

I ask that you treat us as you would want to be treated if you were in our position. I want to say to you...see yourself in my shoes, but that would not work... You would only loathe yourselves even more and possibly because more hardened and bitter. It would not work because you would be looking through the mindset of misery and shame. If only you could clear your free from the social negativities associated with autism. If you could see yourself as a light...bright and deeper than the ocean...empathy as vast as the expanse of the skies. If only you could see us the we saw ourselves before seeing ourselves through YOUR eyes. You would see something most spectacular.

I apologize if my words seem simple. I am one who lives on the spectrum and can only share the view I see from inside looking out.

Thursday, July 31, 2014

A Little Something: Today's Lament

Today was not too different for me.
My son arose at 6am and he,
Put's on a movie playing it very loud.
Not just any loud,
But playing the same section over and over again loud.
Darn that AB button.

He bursts into my room,
Giving me a huge kiss on the cheek,
Before grinning and spinning on tippy toes,
While reciting repeating lines.
It's going to be a happy flappy day.

I got up a little later,
Said my prayers and made breakfast.
I've quite enjoyed taking this little break.
Most of my days filled with following up on correspondence,
Debugging the front porch and then blogging about it,
All while enjoying a cup of hot tea.

I'm sitting in front of my computer,
Thinking of what to say.
Does it matter?
Will anyone read it anyway?
Aww, in comes my little dog Ginger wanting to play.
Oh look, she brought two friends,
That I'll spend hours swatting away.

Stressing, stressing, stressing, stressing,
I'm so tired of stressing today.
Another sip of my lukewarm tea takes all the worry away.

What is that I hear?
Could it be,
The microwave's buzzer in my ear?
My son's just made lunch.
How much time has gone by?
As I still sit here glaring at my screen,
Losing the will to try.

Does anyone really care,
About the words I struggle to say?
I think I might give up on it and try another day. I won't! I'm going to write something today.

So here it is, my lament as you see.
I'm rejoice spinning and grinning with glee,
Feel like singing from the trees,
That I so cleverly wrote this post with ease,
All while taking another sip of my ice cold tea.

Tuesday, June 17, 2014

Raising The Free Thinker

This happened last week during music therapy.

Therapist: Okay, it's your turn. What do you like to do outside during the Summer?

Son: Silence

Therapist: Answer the question, please. What do you like to do outside during the Summer?

Son: Silence

Therapist: Aren't you going to talk to me?

Son: Not right now. It's dinner time.
Hmmm, I haven't figured out how I feel about raising a teenager. On one hand I love the fact that my son has become an independent thinker and expresses his thoughts openly. On the other hand, he's expressing his thoughts at the most inopportune times.

There's something to be said about this teen thing...

Note to self, find out where the body snatchers left the pod...

Parent2Parent Tip #7 - Learning How To Let Go...A Little

As parents we want to shield and protect our children, especially when they have special needs. How much is too much?

My son is 14. I've always set the stage where he is free to learn in his own way and grow in a safe, loving, nurturing environment. To me, this is a parent's dream. Am I raising him too free?

I pride myself on giving to my son what I myself did not have. In my childhood home there were few freedoms. I was not allowed to explore the world around me much.  Everything was deliberately designed or pre-determined. On Saturdays I'd sit on the front steps and watch neighborhood children roam from house to house visiting friends. To some degree I understand my confinement, after all, I was different and needed looking after. My world was literally an 8 x 10ft room, school, and a chair at the dinning table. When outdoors I was allowed to sit on the front stairs or remain in a fenced in back yard. So I mastered my confinement and learned to appreciate its designated spaces hoping someday to break down the walls.

I have managed to managed to break away from some confinements. It's a matter of comfort and safety because confinement is what I know best. I supposed that is why I raise my son to be a free spirit. I fear what the world may be like for my free spirited son, but I refuse to raise him in a bubble. Why would I ever want to stagnate his spectrumlicious way of seeing the world around him? With the help of community workers, my son's able to see more of the world than I can show him myself. As for what I teach him...I teach him academics, but more importantly I teach him that making mistakes is not all bad. When he make mistakes he learns from those mistakes. When he falls down, he can get up again. I have taught my son that he won't always have what he wants and things will not always be the way he wants them to be, but he can still make the best of it. He's learned that sometimes his most prized possessions break and yet he can manage to live without them. He cherishes his relationships and his belongings and he values his personal space. He knows that he is somebody special and he has no doubt that he is loved. He embraces his responsibilities and thrives in them. He knows that making good decisions has its rewards and making bad decisions comes with its consequences. And he has even teaching me to graciously accept the fact that he is growing up. I am forever grateful for being blessed to give my child what I did not have. I long to be free like him one day. In the meantime, I continue teaching him all I can. I am learning how to let go and let him grow, always encouraging him to stretch and test his wings. I trust God will be there to catch him if and when he falls.

The reason I share this story with you is because I want you to think beyond of your child's immediate world and realized that he/she will grow up someday and will have to function outside of what they've learned in your presence. I know it's a scary thought, but it is a reality that will have to face. I don't know what your child's capabilities are or will be in the future, but I do know, like it is for all of us, they will learn as they go. Be mindful of the things you choose to teach them and remember that we can't teach them everything, even though we may make every effort. There are things that they can only learn by living their lives. They will have to experience the joys and the trials on their own terms. We as parents are to be there as advocates, guides and supporters, but not crutches.  Give them freedom as much as they are able to tolerate. Allow them space to make mistakes as they learn how to make decisions. If your child is nonverbal recognized that they still have a voice that needs to be heard. Monitor your child, but do so in a way where they don't always know it. Let them develop a since of self.

One of the hardest things in life for a parent is to see your child hurt. One of the best things a parent can do is to allow that child to feel the hurt, help them up, brush off them and encourage them to keep going.

Monday, April 14, 2014

Parent to Parent Tip #6 - Literally Abstract

I am a literal thinker, so I know firsthand how daunting it can be to see abstract meanings. As a result of my brilliance (ha ha), I decided to teach my son, as best I could, the art of abstract thinking. Not the best idea...

A couple months I showed my son all of the locations we have for tissue in the house. You know...kind of like knowing all of the trash cans locations. You have choices. You don't have to go to the same place to do the same thing. Okay...whatever. Anyway, I did this because allergy season was coming. We both have allergies and pollen is one of our biggest issues. My son is very particular about things touching his nose. A runny nose is very uncomfortable for him. In the past he used to come to me, holding his nose outward as if keeping it as far away from his body as possible. I'd get a tissue, place it in his hand and ask him to clean his nose. He's gotten very good at it. So good that he even handles the occasional nose bleed well. He doesn't seek my help anymore.

Now that we've established another use for tissue, I have to watch my son's usage. He tends to take large wads of tissue to dab one drop of moisture from his nose. He doesn't like for anything he considers unnatural to touch his hands, which lead to the speech about usage and the fact that tissue is not free and we need not be wasteful.

Just the other day, while putting up laundry I noticed that we used more towels than usual. We always have a huge load of towels, but the past couple week’s loads have been steadily increasing. I wondered why so many towels were being used. I've since figured out what the culprit is. My son, being the thinker that he is, putting 2 and 2 together, decided to use bath towels instead of tissue to wipe his nose. They are readily available, washable and soft to the touch. Not to mention, they are large enough to keep any offending substance from touching his hands. He must be wiping his nose one time and putting the towel in the laundry. At least it appears that way. Last night he must have had several runny nose incidents. How do I know? There were 4 more large bath towels in the laundry. The largest ones we have. How do I undo this!!! I'm trying to explain to him to use the tissue for his nose and not the towels. Is there such a thing as being literally abstract? Oh well, laundry day is tomorrow. Happy Monday!

So my tip for the day is... Think about the broader scope of what it means to teach the inquisitive, experimental, abstract and still literal thinking autistic child. You just may encounter some of the most inconvenient, intriguing, ingenious moments that you never saw coming. This reminds me of the time I talked to my son about wasting food. Later that night I found a mountain of spaghetti in the dog dish. I guess he didn't want to throw good food away? It's a good thing I got to it before Ginger did. Oh my goodness! I shudder to think. What on earth will my son come up with next?!


Autism is, being bullied just because you see things differently or do things differently.

Autism is, when you have to suppress who you are in order to be accepted, even though those who claim to accept you may never really like you.

Autism is, when you see people around you acting funny as if something is wrong; you wonder what is causing them to act that way only to find later that it was you they were reacting to.

Autism is, the shame and embarrassment parents feel when friends question their child's behaviors. Many children are punished for behaviors they cannot control.

Autism is, suddenly screaming at a friend who was angered because you are confused about an emotion they've shown attached to something they've said which does not make sense, so you inquire and they take it wrong.

Autism is, being so desperate for friends that you are willing to buy things in order to entice friendships, but still devastated years later when your "friends" tell you they were only using you.

Autism is, when family members don't want to be around you anymore because you have absolutely nothing in common. It is as if being shunned for bad behavior or becoming a pre-teen or teen means you've aged-out of being accepted.

Autism is, when your 5th grade teacher doesn't question why you walked out of the classroom nor does she make any attempt to call you back.

Autism is, being left behind, forgotten, ignored. It is a lacking. The lack of ability for people to see your beauty, truth, intelligence and viability.

Please be more accepting of people and their differences.

Saturday, February 22, 2014

Parent to Parent Tip# 5 - Taking Time Out

It’s no secret, as parents and caretakers we seldom think to "Take Time Out" for ourselves. I know, you’re thinking, "I don't even have time to think let alone take a break." I understand. That is why it is all the more important for you to come up with creative ways to meet some of your needs. Especially when parenting a child with special needs. It seems there are just not enough hours in any given day to get it all done. After rigorous treatments, therapies and special diets, other children, spouses and pets there’s nothing left. But there is. There are ways to take care of these things and still squeeze a little time for yourself, even if it means getting up a littler earlier in order to start you day with a quiet cup of coffee.

Remember: Taking care of yourself helps you to take better care of others.

I made it a point to figure out how to meet my needs. Here is an example:

I need periods of time to myself throughout the day. How do I achieve this?

Creating a dialog (key words) for your needs is beneficial. You may want to also include non-verbal cues like hand signals, picture cards or signs. Be sure to come up with words that your child can easily recognize for the purpose you intend and try not to send conflicting messages by giving key words with dual meanings, such as, "time Out." You don't want to use "time Out" as a key word for needing a break if you already use "time out" as a form of discipline. The outcome would not be good. You can use "relax" or a word for what you plan to do like, "read" which would work well for both you and your child.

Hand sign for “relax”, as in rest

Pick a place where you want to child to engage in quiet independent activity. Be sure it is a space that is child proofed and easy to monitor. Have the child help you put fun activities in the space. (Suggestion: a quiet corner in family room, kitchen or perhaps a playroom to start.) Choose a space where ever you feel your child will be safe and comfortable. Don't worry about adding distance between you and your child at this point. For now, only concentrate on getting him/her familiar with recognizing your key word and engaging in an activity independently.

Okay, so far we've come up with a key word, "read" and/or “relax” and a safe cozy space for you and your child; Take the child into the space and introduce them to an activity or help them choose a favorite activity. Then say "mommy is going to read (use sign language also) while you (fill in the blank). Move to a nearby chair, sit, say the key word and use sign language if you wish pick up a book and begin to read. It may only last for a few seconds if that, but you are on the road to freedom. Continue this practice a couple times a day, everyday, but not at the exact same time everyday unless there is a need. Encourage your child to play independently for short periods of time. Leave room for flexibility. If you are too rigid in scheduling you may be limiting yourself to having break time at only certain time. If you prefer to keep your schedule a little more rigid than setting a particular tie for breaks will work best for you. Be patient and persistent. Before you know it you may find yourself actually reading a page or two without interruption.  

This method may seem a bit slow, but it is a huge step and major building block for gaining much needed time for breaks and other activities such as making phone calls, giving attention to other children, making grocery lists, cooking, cleaning, taking care of business and so on. Start of small and work your way up to larger/longer projects.

As your child’s independent play increases (5-10 minutes or so) you can begin slowly moving further away from the child. Start of by setting your reading chair a little further away, moving closer to the door and soon just outside of the door during independent play time. Be prepared to reassure your child if they start to become a little agitated about the change. Continue to be patient and persistent. Again, over a period of time you will be able to move further and further away. You will even begin to engage in other activities besides reading. Continue creating dialog about the things that you need to accomplish while your child engages in familiar and fun activities. Encouraging age appropriate independence is a positive thing for all children to experience.

Children need to feel secure at all times. It is especially difficult when your child is accustomed to having your undivided attention at all times. It is difficult to stay healthy with such rigorous demands. We as parents need to put our mental and physical health back on the front burners. If we don’t, we are going to fast run out of steam and when that happens, anger, frustration and fatigue increase. You will be amazed how taking a short break can re-energize and revitalize you. And sometimes add a delicious healthy snack to your break. It is all too easy to forget to eat. Be as conscious of your needs as you are the needs of your family.

Children are not automatically conditioned to be considerate of your time and efforts. That is why it is important to let them know you have a few needs and to teach them to be considerate of those needs. They should know when you are not actively engaging in activities with them that they are still love them and very important to you.

When your child becomes more receptive to independent activity and you are able to squeeze in a break now and then, you will find little pockets of time to think of other ways to keep daily routines healthy, happy and more relaxed.

I started using this method with my son when he was 6 years old. It took a about a month to work up to a 30 minute break and about one year to be able to take as many breaks as I need for as long as I need, make numerous calls, work on writing projects and take care of household business with minimal interruption. It was hard work, but well worth the effort.

Putting in the extra effort to secure a few of your needs will make all the difference.

Happy Parenting!!

Tuesday, February 18, 2014

Autism Parenting Tip #3 - Lighting

If you notice that your child may be agitated and you aren't sure why. One thing you can try is changing the light source or dimming the lights to see if that helps to calm the child. Whenever possible, offer your child different lighting sources that they can choose from.

I notice early on that my son, much like me, gets agitated when forced to deal with bright artificial light over a long period of time. So I sought out different light sources for his room. He has a window where he is able to get natural light. There are also 3 lamps in his room. One clip-on desk lamp with a soft, dim, low wattage bulb (he can bend the neck in many directions, changing the lights effects), A regular desk lamp with appropriate bulb for doing school work and reading and a lava lamp. He prefers green or sometimes amber lava lamps. My son is able to pick an choose what lighting source he wishes to use.

This is another thing that may help to make the child's space more comfortable and allows him/her to make choices within their special space.

Autism Parenting Tip #2 - Strongest Emotion

Tell your child that you love them multiple times a day, everyday. Show them love with non-verbal cues like running your fingers through their hair or touching their cheek when you pass by.

When I search my past, thinking about emotions that I can identify, the strongest emotional impression was and still is anger and frustration. Not only did I have to cont...ent with abusive parents, but a host of everyday struggles and misunderstandings. There was anger and frustration and every turn.

Many children will have challenges and frustrations along the way. Don't let those frustrations leave a permanent imprint on their memory. Instead, fill their days by showering them with love, patience and gentle kindness. Set necessary parameters so your child will understand what is expected of them. Create a calm and inviting environment at home. Create a safe place that they can go when they need to calm themselves. A safe place could be as simple as a little play tent. Allow your child to help decide what items go into the play tent. My son used to love getting into our linen closet. So I cleared the bottom shelf so he could curl up and close the door whenever he wanted. It was dark and safe. He did this until he outgrew the space, but by then he was able to create another safe place in a different part of the apartment.

It costs nothing to smile and say I love you. It costs nothing or very little to take a table and drape a large sheet over it to make a safe place. These simple gestures will help to facilitate calmness and leave a lasting impression on your child.

Autism Parenting Tip #1 - Rekindling a connection

My son was a happy vibrant little boy, but when autism came much of that changed, at least it changed externally. My son used to look at my face, smile, laugh, sing songs, and loved to play games. All of that changed.

The first thing I did was hold my son and tell him how much I love him. He did not hug me back nor did he look at my face.

I st...arted playing a game with him, one of his favorites, peek-a-boo. In this version of the game I used my hands as blinders holding them over his eyes (not touching eyes) and then opening them like shutters. Each time I opened my hands to reveal his eyes, I would make some sort of funny face. At first he would not look, but after a few months he began responding to our little game. It appeared that he was anticipating something. I don't know if he equated it to being a fun or funny something, but he did actively look at my face.

I did not need my son to look in my eyes, I know that can be very difficult, but I did want him to see my face and feel safe looking at it.

This simple game was our first real connection after autism struck. That was many years ago. My son is 14. Even now he still makes a point to looks at my face everyday, even if just for a moment and he smiles.

Find ways to connect with you child. Make up games or sing songs do what ever you can. Once that connection begins, they sky is the limit.

It doesn't get much better than that.

Monday, February 17, 2014

The Challenges of Potty Training My Autistic Child

Potty training is one of life’s events that we as parents anticipate as well as celebrate. It’s that remarkable mild stone that sets us apart from every other living creature on the planet. Potty training can be a major undertaking, but the one thing that keeps us going is the long awaited ode to the day when we can relinquish diaper duty. Though I dare say, for some of us that day is years in the making.

There are all sorts of gimmicks and gadgets out there to entice our little ones to do the potty thing. Do these gimmicks really work? And furthermore, do they work for the autistic child? Well, I can tell you, gimmicks and gadgets did not work for my son. As a matter of fact, gadgets and gimmicks may have prolonged the process.

I’ve read a lot of information about potty training the typical and autistic child and I have yet to come across information that could have helped me train my son with his unique circumstances.

I started working on potty training my son when he was 3 years old. We had not received an official diagnosis for autism, so there was little to no help offered from medical professionals and therapists. I turned to other parents, books, blogs, television and autism support groups where I found a wealth of information and support.

Over a period of several years, we would try different methods, starting with the tried and true getting on the potty after meal and snack time. We tried getting on the potty every couple hours, every hour, every thirty minutes. We even used the timer method. I was taking suggestions from everyone I knew and still no go. By this time my son hated being on the potty. He would deny himself food and drink to prolong the process. This has become worrisome. My son has a short gut and needs to eat several meals throughout the day and night to gain weight and grow.

Opened to trying just about anything, I sought methods to make potty time as pleasant as possible. I even took the advice of a well-known TV personality, Dr. Phil, who simply said to give the child a party after he goes potty What a novel idea. So, I made my list:

Party hats

Noise makers

Homemade confetti

Large washable play mat



Potty Time Video

Hand sanitizer


1 small child


Party planned. I placed the potty on the play mat, popped the potty video into the VCR, set up snacks and drink and had the party hats, noise makers and confetti waiting in the wings. Now it’s time for the guest of honor. Okay, child properly located, aww, he’s swaying to the potty song. A few minutes later we have success! He did pee-pee in the potty…yeah!!!! I kissed my son, told him he did good pee-pee in the potty and then proceeded to dance around the room, blowing noise makers and tossing confetti. This was going to be the mother of all celebrations…right? Wrong. My child was traumatized and decided not to use the potty ever again. Talk about your low days. All hope literally flushed down the drain. It’s not Dr. Phil’s fault that the party thing didn’t work. Part of the problem was my literal mind and really going all out for the party mood. I should have done something a little more reserved and quite. Live and learn.

Fast forward…My son is now 10 and we’ve just moved into our house. He is still not potty trained and I have seemingly exhausted every possible avenue. There were some who told me to just give up. I had done my best. I guess it’s time to accept that my son might be in diapers for the rest of his life. But wait, my son is able to identify when he needs to go to the bathroom and he indicates that by finding a private place to do so. He even changes himself once he’s done. And the level of control he has over his own body function. Not once in his later years has he had a muddy accident away from home. There’s really only one step left and that’s to get him to use the toilet. There has to be a way to achieve this goal…consistently. After all, what exactly am I fighting…his ability or his will?

As a last ditch effort I cleared the calendar and set up our potty training boot camp. That means we dedicated almost every waking hour to the purpose and practice of toileting properly. Outings were limited to need only. I removed all diapers from sight and replaced them with real underwear. We started off going to the bathroom every 30 minutes, for duration of 5 minutes, allowing extra time after meals and snacks. A diaper was allowed for bedtime. During bed time I set my alarm to wake up every 3 hours so I could get my son up and send him to the bathroom for 5 minutes. I know this sound grueling and it was. My son had to understand that “I don’t want to” was not an option.

I prayed God’s guidance and hoped I was doing the right thing. I didn’t want to push my son to do something that he could not do.

Within a few weeks we developed a rhythm. Progress was being made. Peeing in the toilet was becoming second nature, even while out. We had only three daytime peeing accidents during the entire training process.

Mastering stooling in the toilet came with its own set of challenges and those challenges taught me a great deal about my son’s ability. Midway through potty training boot camp I noticed that my son was not stooling or so I thought. No accident in diapers and no stooling in the toilet. How is that possible? I was concerned. I don’t want him to get sick in the process, so I started paying closer attention to his habits. Ah hah!! That little dickens outsmarted me. My son had a secret stash of pull-ups that he changed into when he felt he needed to stool. He would find a place to relieve himself and then discard the pull-up in the trash, hiding it under other trash if he could. I saw this and could not believe my eyes. How very clever he is. Note to self…never underestimate any child.

I rejoiced at my son’s increased cerebral fortitude, but recognized that I needed to find his secret stash of pull-ups. I checked where I originally hid the pull-ups. No change there. I checked different areas in his room and around the house. I still couldn’t find the secret stash. So I wait. He’ll have to run out of pull-ups soon. It wasn’t long before the inevitable happened. My son is starting to refuse food and drink again. He’s determined not to stool in the toilet or ever, for that fact. Three days pass and still no stool. It’s time to turn up the volume on the training.  Instead of going to the bathroom every 30 minutes to an hour he now has to spend most of his time in the bathroom, taking breaks for eating, playing and sleeping with close supervision. Another day goes by and finally! It happened. Success…true success. This time there were no parties, only a warm smile and a job well done. I continued encouraging his successful self-toileting, which he seemed not to mind. It took all of 3 months to get the bulk of his training done and those 3 months changed our lives forever.

Taking this huge leap did more than just rid us of pull-ups. My son seemed more assured of himself and more mature in how he handles himself. I think we tend to take for granted that which comes easily for “typical children.” We think about the cognitive implications as new life stages are met, but there is very little talk about the child’s sense of self as new challenges are conquered. These things make a tremendous difference in the child’s life. It’s not just about gaining skill, but gaining the knowledge that “I can do.”

Don’t give up! – Sometimes you have to step back, leave a situation where it is and then revisit it much later. If you find that you have to take a break because potty training is way too challenging, then break the process down to the smallest degree. That will be your starting point when you and your child are ready to meet the challenge again.

Don’t compare your child to other children. His natural rate of progression is his alone. Respect that and encourage him to do his personal best.