Category Archives: Sensory Disorder

To Medicate or Not to Medicate … That is the Question

The story of one of my worst days ever ….

Dr.: He needs to be on medication to make him sleep and take away his anxiety.

Me: He’s only 18 months old.

Dr.: He needs to sleep, you and your husband need to sleep. This will help him.

Me:  He’s only 18 months old.

Dr.: When was the last time the two of you slept longer than 30 minutes at a time?

Me: 6 months ago.

Me: Will he be on them forever? Are they addicting? Do people actually give their “babies” drugs like this? Are you sure this is okay?

Dr.: Please trust me.

Me: OK.

That day, by far was one of the hardest days of my life. I was being faced with the decision of putting my little boy on a drug that was normally used on adults in psych. wards. He was 18 months old and something was very “not right” with him, but this was terrifying.

When I left the office with a prescription, and had a few minutes to process my decision, I can distinctly remember breathing a sigh of relief. I knew that my boy needed help, and was hopeful that this would make a difference. That night, for the first time in 6 months, he slept for 6 hours in a row. It took me a few nights to trust that he would actually sleep and stay in his room and not wander my house, or escape or hurt himself or whatever else “awake” toddlers did. But it worked, it actually worked.

That day changed my little boys life and mine. It was our first step into “real change” and our first try at correction with medication. It was terrifying and life saving all at the same time.

5 months later, we were back at the doctors office, as my son had taken a turn for the worst. He had stopped talking, stopped walking, and was in an anxious state of “craziness” (for lack of a better word) all the time. Just being at the doctors office was challenging as he threw himself around the room, crying, yelling and refusing to sit still. I explained everything to the Doctor, and he said the words again. Let’s try some medication. Ritalin. As soon as he said that, I froze. Ritalin for a 2-year-old. Really? He proceeded to tell me that he felt like my little man was a perfect candidate and that it would make a significant difference in his life. He told me that if Ritalin works, the changes are obvious within a day, so if it doesn’t work, we stop. That gave me an “out”, and I agreed to give it a try.

At noon, I gave my boy his first dosage. He was 23 months old. By 6:00 pm, I had a different child. It was the first step towards “calm waters”. He was walking and talking normally, and he was happy. He was letting us touch him and hold him without lashing out. It was amazing.

The next morning, I called his doctor and we had a telephone party. He was just as thrilled as we were, and had only ever heard about the miracles that Ritalin could accomplish, but had never seen it before. He was “the kid” that this drug was developed for, and I’ve never been so thankful for something in all my life.

As the boy got older, his needs and issues grew and/or changed. Over the years, we’ve tried many different drugs, dosages, and therapies. Many, I flat-out refused, and many we tried. For every one that worked, 2 didn’t. It was a very long and trying process, but it was worth it.

He’s almost 13 years old now, and still takes 5 different drugs every day. His dosages are less than half of what they were though, which we are thrilled about.  My goal is to get him off them completely, but for now, he’s doing incredibly well, so we will maintain this course. For now.

I can say 100% without question that if I hadn’t agreed to that first step so many years ago, that I would not have the boy that I have today. These medications changed his life.

Lots of my kids have been on medications for some reason or another but 2 of them stand out in my mind to this day. I will never forget when one of them came home from school and asked me “if I knew that his teacher had brown hair”?  It was February. She had been his teacher the entire year, and he had never noticed her hair colour until he was on meds. The other boy also came home from school and told me that “his teacher has a really squeaky voice”, again, it was 6 months into the school year.

I asked them what it felt like to be on the meds, as I truly was curious because my little 2-year-old couldn’t tell me. Their words were simple, but very insightful. They both said that they felt like they could finally focus and actually see things. Words and faces and sounds were no longer jumbled about and just “bouncing off of them”. They felt normal, or what they thought normal should feel like. They felt free.

At that moment, I knew that these medications weren’t about me, and whether or not they were right or wrong to take, but about them. They needed some success in their lives, and that became my focus.

I’m not saying that all kids should be on meds, NOT AT ALL. In fact, I believe that many children are over-medicated or improperly medicated. I think that pills are many doctors’ first response as opposed to real diagnosis or treatment. BUT, I do believe that medications can truly change their lives, if handled correctly.

Meds shouldn’t be seen as a way to make your child be good or quiet or turn them into little robots. Instead, look at them as a way of giving power back to your child. If he can feel even a tiny bit of success or peace, he’s able to focus more and work on what he needs to work on. Imagine that your head is spinning out of control and then someone asking you to read a book or do some math. Imagine that the sounds that we hear have been amplified 25 times and being expected to sit in a desk and focus on your work. Imagine what it feels like to always be in trouble for acting out, not sitting still or bouncing around in your desk. Now imagine spending your days being confused, scared, anxious, embarrassed and isolated and being expected to somehow be “normal”. As adults, that would take many of us down, but those are expectations we put on our children all the time because we refuse to “put them on meds”. No, pills are not the be all to end all, but they should be an option.

If you are presented with putting your child on medication, my challenge to you is this. Do not immediately shut it down. I’m not saying you go blindly into an appointment, and just put your child on whatever pill is handed to you. What I am saying is to listen to your doctors words, do some research, ask friends that are dealing with similar things and then make a decision. If you’ve tried meds and they’re not working, try a different one or switch up a dosage. If you feel like they’re making your child worse, or giving them horrible side effects, take them off. But most importantly, be prepared to change “you”. Do not expect medications to make you a better parent. Kids with special needs, learning issues and challenging behaviours need a different kind of parenting. You MUST change and you must do better as well. Pills or no pills.

If you’ve started your child on meds, do not feel guilty about it. Ignore the judgemental words and ignorant comments. Only you know your child and what they need. Watch them and see if they’re actually helping, watch for side effects, take note of changes. Ask them how they’re feeling, do they feel better or worse, happy or sad? Ask teachers, caregivers, family members if they’ve seen changes. Make sure that you are very “present” in their therapy and treatment. Don’t just hand over a pill and wait for a miracle. It’s going to be work.

If you are the friend to a parent that has chosen medications or some alternative type therapies to help their children, be gracious. Ask questions but respect their choices. I can guarantee you that they’ve already struggled and wrestled with their decisions, and don’t need any more guilt thrown their way.

Look at your child’s face. If they need help, get them help. If you’re given a scary diagnosis, it’s okay. Look at that as the first step to something better as knowledge is always power. Our kids deserve to have us fight for them, and give them the best of everything that we’ve got. If that “fight” involves meds, so be it. If you choose a different path, that’s okay too. Just please know that there are many, many healthy success stories that involve prescription medications. Not everything you’ve read about or heard about is bad. My son is living proof of that.

Diagnosed with a Sensory Processing Disorder … Now What?

Since I wrote my last post about my son and his weirdness, I’ve had lots of people emailing me and asking me how we helped him get through his days.  So, I’ve made up a list of some of the things that we did and still do for him.  Even if you don’t have a sensory kid, you may find some of the info very calming and soothing for your kids as well.

But first, If you suspect your child may have a Sensory Processing Disorder, or some weird sensitivities, talk to your doctor. They’ll point you in the right direction and help you get the support that you need. If your doctor doesn’t know much about SPD, or you’re not satisfied with their response, contact your local Health Unit. There are many early childhood programs available and they will most definitely lead you in the right direction. While you’re waiting for that help to arrive, take notes. Makes lists of what your child does or doesn’t do. Make note of situations or activities that set them off. The more information you can present to the professionals, the quicker a diagnosis and assistance can arrive.

2 Books that I highly recommend you read are “The Out of Sync Child” by Carol Kranowitz  AND “Raising a Sensory Smart Child” by Lindsey Biel. Both of these books really helped our family understand our little boy a whole lot better. You will most definitely feel a sense of relief when you read them as you’ll recognize that you’re not alone in your journey with SPD.

1. Change the way you “touch” your child. Many SPD kids and “normal” kids for that matter don’t always like “light fluttery touch”. Rub their backs or skin with purpose, don’t be afraid to apply a little pressure.  It’s also a good idea to “cup your hand” when you touch as opposed to using an open hand or just your fingers. Try it on yourself, you will feel a difference. Something that really calmed our son down was to stand behind him, cup our hands and place them on his shoulders. Then push firmly on his shoulders and all the way down his arms and then repeat. You could literally see and feel him “melting” in front of your eyes.

2. Look at your surroundings. Does his favourite chair face a window?  (The sun may too bright for him). Is his desk at school beside a garbage can or the pencil sharpener? (Those smells and sounds may be too much for him to process). Is his bedroom really busy … as in too many things on the walls, too many toys, etc. (He may need calmer surroundings).  When trying to figure out how to calm your child and make them feel “safe”, step back and look at the big picture. You can make a significant change in his life by just moving a chair, or giving him a ball to sit on. Little changes can be HUGE.

3. Establish a calming “routine or space” as soon as possible. Our son liked a variety of things, but they all involved him being covered up or buried someway/somehow. Those cool little “cocoon” chairs that close up from Ikea work awesome. Blanket Forts, Heavy blankets, crawling tubes, under a coffee table covered with a blanket, all work great. Just figure out a place where they can go chill with little to no stimulation. Pay attention to what sensation they’re always seeking, and figure out a way to feed that need. Be Creative.

4. My son was always seeking out deep touch, so we had to figure out “strong” activities for him to do. He would always carry our groceries for us. We’d dump them by the front door and let him carry them to the kitchen. We also kept full paint cans in various areas around the house and would get him to carry them for us to wherever.  Another great activity for him was to take a pair of pantyhose and wrap them around the bannister on the stairs and let him play tug of war by himself. He would toboggan down the stairs, bumping and banging his little body along the way. He’d lie down on the floor, we’d cover him in couch cushions and push down on him, or let other kids jump on him. We would roll him up in a big blanket like a sausage and roll him around the living room. One of his favourite things was to lay down and let his body be a drum. We would drum on his little back, race hot wheels all over his body, and roll a big ball over top of him. The more creative and sensory we got, the happier we has.

5. At night, he slept with a very heavy weighted blanket and during the day, he would sit and relax with it across his lap. We had to keep his bedroom pitch black in order for his little brain to slow down enough for him to shut off. It took us many tries to find a blanket texture that he could stand touching … we actually ended up taking him to a fabric store and just letting him touch and feel. (If you have a child that just won’t settle, I’d totally recommend giving a heavy blanket a try, even while watching TV. It’s very calming).

6. Items we wouldn’t have survived without: weighted vest, weighted Superman cape, sunglasses, ball caps, fabric tube to crawl inside, super soft fingernail brushes for dry skin brushing, weighted blanket, large yoga ball, paint cans, play tent and bucket loads of “fidgets”. (Bumpy little textured toys of various shapes and size).  We still walk around stores touching and feeling things and letting him buy stuff that just “feels” right. Water tables, sand boxes and hundreds of Hot Wheels to line up and race kept him happy for hours.

Your child will give you many clues as to what they need. Be warned that their needs may change, and a favourite toy or activity today may be repulsive tomorrow. Polar fleece is one of those things for our boy … he either loves it or hates it, there is no middle.He continues to keep us on our toes, but if things get bad, we increase his “sensory diet” and things settle down right away.

A diagnosis of SPD is a little bit overwhelming at first but trust me, it’s not the end of the world. Listen to your child and you’ll find your way through it together. I promise.

My Weird Little SPD Kid

When the boy was born, he just came out “weird”. Don’t get me wrong, he was crazy cute, really happy and for all intents and purposes, perfect. But something was wrong. We didn’t know what, but we knew that something inside of him wasn’t right. He never seemed to settle. He was always fidgety and squirmy. You could see that he was physically uncomfortable when he ate. He was a terrible sleeper.  He freaked out when we covered him with a polar fleece blanket.  And for lack of a better word, he was “weird”.

Then he started getting sick. He would get RSV or pneumonia an average of 6 times/year. The first time was at 3 months, and it marked the first of our innumerable trips to the ER. It took years to figure out what was going on in his little body, and I’m happy to report that overall, his health is much better now. He still has bad days, but the space between them get farther and farther apart. For that I am so very thankful, but that is not what makes my little boy special.

I remember sitting in our pediatricians office discussing the quirks that made my boy tick. After much questioning and deliberation, he said the word that I didn’t want to hear. Autism. I said No, I want to explore this farther. I never truly believed that he had Autism, so I didn’t accept the diagnosis. I went home and started doing a bunch of research on my own, and began to piece the puzzle together. In the meantime, we continued to track everything that was going on with him, the things he said and/or didn’t say. The weird little games he played, and the ways he would seek out attention. Everyday we’d spot something new and would wonder how we could help him cope better.

We returned to the Doctor and learned that he too had researched and found some answers for us, answers we could live with. My little one’s weirdness finally had a name. Sensory Integration Dysfunction and PDD-NOS. Pervasive Development Disorder – Not Otherwise Specified. (How’s that for a mouthful)? Looking back, I really don’t know why I was so desperate in not wanting it to be Autism. It wouldn’t have changed who he was, or how I would help him adjust to the world around him. He still would’ve been my little boy. Autistic or Not.

Once we knew what was going on and that we didn’t need to be scared or worried, we just learned how to deal with this new “sensory processing disorder”.  Here’s a great definition taken from http://www.cornerstonepediatriccenter.com/Therapy.aspx  – Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is  “a condition that exists when sensory signals don’t get organized into appropriate responses.”  When these signals aren’t efficiently processed the brain has what amounts to, a neurological “traffic jam” that  prevents certain parts of the brain from receiving the information needed to interpret sensory information  correctly. A person with SPD finds it difficult to process and act upon information received through the senses,  which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety,  depression, school failure, and other impacts may result if the disorder is not treated effectively.   In shorter, simpler terms, he would either be over-stimulated or under-stimulated. He couldn’t “feel” like we could, so he would constantly seek out strong, heavy touch. He would cry or freak out when he had to wear different types of fabrics. He couldn’t handle being in loud, busy settings. Flashing lights and unexpected noises would push him over the edge. Basically, our normal, was abnormal for him.

We quickly learned that we always had to look before we sat down as he was always trying to get us to sit on him. (He loved deep touch).  We discovered that grocery stores were almost more than he could bear. (I wrote about that here). He wasn’t able to eat any food with texture without throwing it up on the table. He loved lining things up. There would be rows and rows of cars and toys all over our house. When he started talking, he would refer to everything as to what they did and not what they were. Airplanes were flies, Cars were drives, etc, etc. He was incredibly sensitive, and was scared of almost everything. Toothpaste made him throw-up. He couldn’t play outside in the sun without being in physical pain. He was the sweetest, most kind-hearted little boy who ever was.

Once we got used to all of his weirdness, we were able to give him a “sensory diet”, which improved his life greatly. He loved to carry our big heavy bags of groceries to the kitchen. When we ran out of bags, he would carry big heavy paint cans around the house. He slept under a heavy weighted blanket at night, and wore a heavy “superman cape” during the day. When we went out, he always wore a ball cap and sunglasses. When we were finally able to convince him to try going to a movie theatre, we went with a ear-flapped toque and a hoodie over his head. We learned about dry skin brushing, and playing the drums on his back. When he was having a really bad day, we’d wrap him up as tight as we could in a blanket and rolled him around on the floor. He used to always tell us that he was itchy, and once we figured out that “itchy” meant something was hurting him, or he was over-stimulated, life got a bit easier. Everyday really was a new and fun experiment in learning for all of us.

The boy is now 11, and is doing incredibly well. As soon as he was able to put his “feelings” into words, he started to get some relief. He is still very sensitive, and very literal. We have to watch how we word our conversations with him. We can’t say the “sky is falling”, as he’s going to go and check. He has an incredibly strong sense of justice, and will always defend the underdog, sometimes to his own detriment. He’s learned how to separate himself from crazy, loud and uncomfortable situations. We’ve figured out the situations that he needs to avoid. He’s terrified to go to Disneyland, not because of the rides, but because there’ll be so many people there. We can’t raise our voice when correcting him without causing a full meltdown. We still have to get the tags out of everything he wears. He still gets “itchy”, is super light and sound sensitive, he hates being tickled and is very easily overwhelmed. BUT …. I’m happy to report that he is now able to go on school field trips, without throwing up. He is able to go on sleep-overs at his friend’s house without being terrified. The overwhelmed tearful bouts are happening less and less often. He can wear sweatpants, 3/4 length sleeves and long socks. He is able to be exactly who he is, and he’s pretty awesome.

If you’ve got an SPD kid or work with one, I don’t say these things to scare you but to give you hope. There is light at the end of the tunnel, and there will be change. Listen to your little one and try to figure out what their words and actions are really saying. Don’t be scared to think out of the box and try crazy things to help calm your child down. Don’t get caught up in the funny looks from the passers-by. Get ready to fight for your child in the classroom, at the doctor, in playgroups, etc. SPD is hard to explain, but come up with words that other people will “get”. I found that once I could explain things, people became more comfortable with him. Do everything in your power to make your child feel safe. Most importantly, hang in there. Take time everyday to laugh or cry or scream or whatever you need to do. It’s hard to watch, and it will break your heart. But I promise you that your child is going to teach you lessons that no one else could. He’s going to give you patience that you never dreamed possible. He is one of your greatest gifts. Enjoy the quirks and weirdness for what it is … you’re going to laugh just as often, if not more than you cry.  Trust me, you’re both going to be okay.

And before people freak out on me, I don’t think my son is weird. I don’t think SPD is weird. I just know that when our journey began … it was the only word I had that summed him up perfectly. By speaking that word out loud to his doctor .. his journey to healing got the push-start it needed. “Weird” set us free.