Sensory Woes

Sensory Integration Disorder

This is going to be a long section because this is still a on going journey for us. We have made huge improvements over the years with the help of many things.

Honestly this is a hard one for parents to understand especially when you don’t suffer from this disorder.

In all honestly a good starting point is this book. Recommend to me by a very very skilled occupational therapist who made great progress with our son she not only was educated here in the United States but started her training in South Africa. This book helps you have an understanding of the disorder and gives you a glimpse into your child’s world to help you gain further compassion.

This Book by Jean Ayres, P.h D can be hard to find but I would check any favorite book sites you have and libraries. Over the years I have spent money on varies books on this topic or have gotten books at the library and this was my favorite of all of them.

So sensory problems,which I am sure your aware, manifest themselves in many different ways. Some children it’s noise, lights, fabrics, smells, and this can take forms on any to many objects that you encounter in every day Life.

Consequently, Making day to day normalcy into a battle field. I know this because I have lived it too the extreme with my son and we still go through it. Thankfully it’s much more managed now.

I have not forgotten the waking up early and preparing myself to enter verbal combat and my sons tantrums that lasted years. It took me getting to a breaking point where I felt I could no longer live that way, wanting to leave my child, that I finally sought out help, tried the impossible or not well known and we did see improvements that helped long term.

My son, when he was young, would take close to two hours to get ready for school.

He would be screaming the entire time first about socks, we had to get the right socks and they had to have the right lines, I adjusted the socks to his feet many times before the right fit was complete. Then clothing!!! Oh man the material had to be just right and had to fit just so and shoes. He could wake up one morning and decide that the one pair of shoes he would wear didn’t feel right and it usually lead me to the store because that meant he would never wear those shoes again. It could have been they got wet earlier or just felt different. We went through this routine for years. Church was the hardest he didn’t like the feeling of church clothes so I would allow him to wear what he wanted too, but the shoes were still a huge issues. For years I would somehow manage to get him In the car but I would have to argue, eventually carry my son to church and school with shoes in hand. We somehow got the shoes on at some point. But I felt like I had just ran a marathon physically and emotionally and it was only 8:45 in the morning

When me son started 2nd grade that’s when the sensory started really affecting class. Prior to that we would put stick able Velcro to the bottom of his desk to touch or the rubber band around the legs of chair to occupy his fee. Tried tactical pencil toppers, necklaces and bracelets he could chew on. He would chew holes in all his clothing. The collar and sleeves. Clothing that took forever to find that he would wear was within a week chewed through. But what became the deal breaker was the sound problem. My son described it that “He heard every single pencil tap on every desk” , that combined with normal noise was too much. He started needing to go out of the class. It became impossible to take tests and that’s when we found Brain Balance. We at this point had been doing occupational therapy for a few years and a sound therapy with music and special head sets. We did see improvements with some things. Many things got better but it only took us so far. Brain Balance was what helped us see Huge improvements.

It’s not a get quick fix, or pay someone else to do all the work. If your serious and it’s an investment but well worth the money. We were able to not have to do occupational therapy after Brian balance. No more clothes being chewed through and the screaming fits over clothing’s stopped. In the long run it’s a money saver. But you have to be serious, you have to do your best to follow the diet and daily exercises and expect to work hard. Both parent and child. But it is so worth the work. With real, lasting and effective results.

A good place to start if you want to look into Brain Balance is to read the book written by the founder

This book when I read it just made sense and described so much of my sons behavior. Brain Balance in a nut shell is about balancing the hemispheres of the Brain and you do this by exercises and training at the Brian Balance centers that strengthen and more fully develop those parts of the brain that are not as strong. The brain is a muscle never forget this.

I was very pleased with our experience it was life changing for us in terms of sensory and helping calm down the ADHD, ADD.

My sons on the end of the spectrum where he hyper focuses on something or an idea. Obsession on something.

So look into this great program.

Crowds have always been a issue, places with lots of noise, and sitting in rooms with too many people. What has helped with this is fidgets. Welcome to the world of fidgets. With anything tactile your child will find what he likes and doesn’t like. The trick is finding the right item. These are some things that we found success with. Some he only liked for a period of time but all and all they all were very useful.

Speech and Frustration


Speech is one of those things that you just hope and pray your child will figure out from all the people around them. It’s hard to know,at first, if there is a delay and then some say there just late bloomers.

Early intervention is key if you think and recognize a problem. Some school districts thankfully recognize this. So if your child is approaching 2 or 3 and struggling with speech, call you school district, and ask about early speech intervention at a school near you. Sometimes you can qualify , school gives an assessment , then you can access free speech through the school. Also check with your pediatrician for a good speech pathologist in your area. Before you go looking for a speech pathologist they will want to know if you got your child’s hearing checked. So do that first to eliminate possibility that it’s your child’s hearing at the root cause.

Then there Apraxia – the link below will provide lots of information

Apraxia is a frontal lobe disorder so it’s a speech problem caused by the brain. We were very lucky and found a Apraxia specialist in our area and my son started speech at 18 months. Prior to my son starting speech the Drs thought he was Autistic. All he did was scream and throw things. He did this for hours daily around starting around the age of 1. He could not say more then two words, dog and ball. Early on I did baby signs which helped initially to communicate but turned into a nightmare when he developed using his hands to create his own language and then scream at us in frustration for not understanding his bizarre hand signals. Looking back it was cute at times but very frustrating.

I share this section on speech because speech is important and early intervention is key. My son didn’t end up being Autistic, though many other diagnosis came later some related to autism , had we not done early intervention he might not have ever been able to put clear words and sentences together. Apraxia is different in that the child knows what they want to say, but the frontal lobe of the brain scrambles it up so that when they talk it sounds like gibberish.

It’s best to find and work with a Speech Therpist that not only understands Apraxia But has you work at home with your child. We made the biggest break throughs doing flash cards daily at home. I not going to lie to you, it was a lot of work and difficult at times, but by four years old my son was no longer deemed Apraxic. Even though, he had been diagnosed, severely Apraxic early on. Even if your child’s older, don’t lose hope. Keep working and trying and don’t give up.

So another connection I have made with kids ,like my son, that are Atypical in the diagnosing world. Many of these children struggled with speech, were late talkers, or had behavior problems because they simply can’t communicate what they want without frustration.

Also don’t be afraid to try different speech pathologist and methods. Before we found out my son was Apraxic we went to at least 7 different speech pathologist. Many have there own philosophies and methods. Find what works best for your child and if you don’t have options do your own research and see if the pathologist is willing to check out the research too. We are the main and sometimes only advocate for these children. Your gut feelings are what must be listened to.

Here are some good links to check out below

The Journey Of A Beautiful Brain

This blog is to help support and give resources for parents raising a child with any diagnosed or undiagnosed mental conditions. My list for my child over the years some still applicable and some not autism, Aspergers, OCD, ODT, ADD, ADHD, Apraxia, anxiety disorder, depression disorder, manic depressive disorder, sensory integration disorder. I call this Blog a Beautiful Brain because just because something is difficult and different does not make it unwanted. Each child is beautiful !! Even in our darkest times when I have wondered if my child is still in there. I hold to the fact that life is a Journey and there will be moments of Joy and seeing my child for who he is and not what he struggles with.

For those of you out there, living with a child with a diagnosis, please know your not alone. It’s so overwhelming when you first hear the Dr say some condition, you know nothing about. Let me tell you diagnosis’s are important. Not in the label but that they are a starting point to research and learning. They are not the end point but a beginning.

Professionals can label my child whatever they want but it’s just words on a paper at the end of the day.  We have to wake up, function and get through each day with that child. So don’t just tell me what he has and how bad it is. Tell me what to do and show me tools to help us survive. Medications can and do help. Trust me we have been and are going through our journey on those; but they are just as complicated and can be as problematic as helpful.

For years people have asked me to start a blog to more easily share all the information I have learned through experiences over the years. This is not easy to do but with so many families suffering in silence. I feel it’s time to share my story and resources I have learned.  Most important, that you, are not alone. You are never alone, especially when you feel the loneliest. I am still in my journey learning, finding, struggling, laughing, crying, holding on and having faith too circumstances that are every day changing. Life is Change. Life is Hope. Life is never giving up. The hardest thing with children like this; is what works one day might not work the next. Just know your not going crazy and there is help out there.

My Journey Began By Doing something considered pretty normal by society…. having a baby. My husband and I welcomed our first born baby boy into the world on a chilly day in November. Who knew, What seems so typical would become the most atypical journey of my life.

It’s important to mention I had a lot of preterm labor around 6 months. Had to be put on bed rest and medications. It was also a difficult delivery. I share this but many I have talked to over the years, but not all,  share this in common of difficult deliveries.

Being a first time parent is amazing and difficult for anyone. Being a first time parent of a child that’s suffering with challenges, that you won’t even realize until looking back how different your Day to Day was, is….let’s say unique. You are special, your child is special, and I am grateful I am surviving my life.

Many babies in our community were born around the time my son was born. Oh yes “Baby Wise “ and Some book with the name like “best baby in the block “ were all the new mommy “IT” thing. Yes, have those babies on a tight schedule and be sleeping through the night by 6 weeks. Actually worked for many of my A type friends at the time. Who knew the schedules I would be keeping were from demand feedings to keep my little guy out of the hospital from failure to thrive. He was born with a suck reflex that did not work. Let me tell you there is a correlation between poor suck reflex and speech issues. Many, not all children, who end up diagnosed with something have had “trouble eating” issues as enfants. He also didn’t need much sleep,

I think the first time I realized ,without realizing, something was wrong was at a lunch with friends. Many had their babies or were talking about babies. I remember hearing for sometime how much they loved their little ones all they did was slept, ate,  and cuddled. At some point in conversation, looking back I was totally sleep deprived (probably to the point of crazy ) I semi shouted “I hate this, this is the hardest thing. What are you all talking about, my baby can’t eat, doesn’t sleep, and cries more when I cuddle him “

Sadly I remember a lot of weird looks and I just left. I wish I could have given myself a hug that day, said to my younger me, it’s ok it’s not the same and your a good mother. It’s hard to feel like a good mother when you don’t get those mile stones or verbal rewards we give ourselves in society. That really have more to do with the little spirit we are holding in our arms then our capabilities. If we are trying, giving our best and loving that child…….that’s what matters most. Some childrens minds just process things different. Later at 18 months I would discover my son had sever Apraxia and couldn’t speak. A frontal lobe speech disorder. Also so many tummy problems. We had to spend a good portion of our income monthly on nutramigen.

He didn’t digest milk, soy was a nightmare, and this was the only thing that worked. From here we went to goats milk for years, tried milk again, and now off milk (for most part) entirely.

Now I love things natural! I tried breastfeeding, pumped non stop for months. He couldn’t suck , so had to use a dropper, like feeding a baby bird. Eventually even my milk, even when I ate nothing but rice and chicken to avoid anything with a allergen, just didn’t work. So grateful for nutramigen. If your a young mother struggling to feed her baby reading this, or couldn’t breast feed or did breast feed, just know it’s not your fault. We are so scared to do something wrong to our child and then when something is wrong we blame ourselves. It’s ok to not breast feed, it’s ok to breastfeed. Every circumstance is so different, just love yourself and do what’s best for you mentally, emotionally and for your family.

Other good things we found that help the constipation and tummy issues were

Warm baths , bicycle with his legs

Massage his stomach

Gripe Water to help colic

Diluted Lavender oil, rubbed on feet

Baby laxatives

Help with cost of nutramigen

Beauty in a Difficult Journey

This Blog is to help individuals and families struggling to raise a child or children with various diagnosis that are considered On or Off Spectrum. Including Depression, Anxiety or Mood Disorders, and Sensory Disorders. I really despise diagnosis/labels. Even though they are helpful it’s more important to see your child past the diagnosis and make life work for you and your family. There is HOPE and My goal is to share the knowledge that I have learned over the years from many books, professionals, mothers who know, and LOTS of trail and error. Bottom line it helps to hear another’s journey …..we are not alone