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The SPD Companion, Issue #014-- The REST Of My Story
May 03, 2007

This may be an emotional newsletter for me! I am going to tell you more of my story. Things that you need to know. More about WHY I am dedicating so much of my time and energy to this site, these newsletters, the emails you send me, and the information and support I share with all of you... every day, every week, every month, from this day forward... to the end.

It's hard to believe, but I began this website 3 years ago! When I first started it, my intentions were to educate a few people about SPD. Little did I know what this would turn into. How many people I have met, how many I have helped, and how many have helped me! It has been a fantastic journey. Amazingly, it has only just begun. I have so much more I want to accomplish, share with you, give you, tell you, and learn from you.

It has been 2 1/2 years since I updated my " I've Been There " page. (If you haven't read this page yet, I highly suggest you do before you read on) My daughter is actually 12 now! I can hardly believe it... and with this comes a different world. A pre-teen! But, because of her SPD, she is not like other pre-teens, really. She is at the age of friends, instant messaging, phone calls, sleepovers, going to the mall, the movies, hanging out with people that she enjoys and who enjoy her, etc. But, she hardly does any of these... there is still so much she can not tolerate from a sensory standpoint, and so much she isn't willing to do out of fear. The simple, regular things a child does at her age. She has no social skills!

I will be honest with you, I am concerned for her. Why? Some of this may surprise my faithful subscribers, but I feel it is time the REST of my story be told... because the reality is... *cringe* we never REALLY got her the treatment she needed for her SPD. I know, hard to believe... I am an OT, and someone who spends every single day talking to people about it, educating others, supporting others, and emphasizing the huge importance of getting therapy! Seems strange to me too. It is something that has really been on my mind lately as I see her struggling to find her place in this world and come out of her TINY, isolated, predictable environment, and just so lost socially.

You see, my daughter doesn't even live with me. She hasn't since she was five when her dad and I split up. For years we (me and her) saw each other, at least two days a week (overnights included) and every other weekend. For years this was a real problem for her. Transitions are very hard, still to this day... and were even before we split up. The back and forth was too much for her... but we just kept hoping she would get used to it. She truthfully, never did. If she was with me, she was full of anxiety and missing her Dad, her dog, and her home. If she was with Dad, she was crying for me.

This went on literally for years, even though we did everything in our power to help her. Her dad and I were, and always will be, good friends and will do whatever we need to do for her. The problem lies in our differences in knowledge, experiences, and opinions. Hmmm... could this have been some of the reasons we didn't stay together. Let's see... in a word, yes!

It was so hard parenting our daughter... so hard! I know so many of you can relate. And now, I wonder... how many other parents have gone through this? Probably more than I ever imagined. Raising children is hard enough... raising a child with SPD, even harder... raising a child with SPD and having both parents on the same page, almost impossible.

So, do know if YOU are doing this successfully, I sincerely applaud you, Mom and Dad!! You are to be commended, and have my utmost respect. I know there are some out there, I have talked with you! Stand up and be proud... while we applaud you! To my amazement there are even grandparents who write to me, research SPD FOR their grandchildren, and want to know all they can about it so they can help their grandkids! I told one grandmother how rare this was (a different generation, a different time, different rules and different parenting styles). She responded, "I thought all grandparents were like me!" Truthfully, this is not the case. So I applaud any grandparent or other family member who has a big enough heart, and open enough mind to know things are different today! We know more than we ever did before. SPD is real and it is here to stay! We must recognize this, understand it, and help these children. Denial will never be the answer... never.

For those who have experienced dissonance in, and difficulty with, your marriage while trying to help your SPD kiddos, know that you're not alone! Many have emailed me, or talked in the support groups about their husband/wife not getting on board with the "SPD thing". It causes great distress and can indeed break up a marriage (not completely by itself, but in some cases it IS the major stressor!). I don't ever want another family to have to suffer like this... loneliness in the pursuit to help your child is not uncommon. We get disapproving glances by the schools, the doctors, the professionals, family members, and by strangers in a store, etc. Getting people on board with what is really going on with our children can be one of, if not the most difficult challenges we will face. Let's find a way to get on board together, united as a team to help our children. They can't be alone in this, and neither should we!

If you are someone who has the support and understanding of people in your community and family... be so very thankful! Not all of us do... so many don't! It is a lonely world sometimes... we can become so lonely, desperate, guilty, unhappy, isolated, and filled with grief and despair that there are days we wonder if we can go on! Have YOU ever felt this? Truth be told... I have! We wonder what we did wrong? What can we do? What is wrong with us?! With our child? Why are we judged, told we are not parenting the right way, not helping our child? When we are the ones who are trying to help! They say "ignorance is bliss"? Hmmm... not in this case!

Every parent, I realize does the best they know how. But, the more we educate, the more parents "know how". I did the best I could with what I knew and the resources I had... but neither of these were good enough.

So... here's what happened... truth be told.

I was the type of parent who could not, and I mean could not handle my baby being upset, uncomfortable, or crying. And THIS she did a lot! I would console her, hold her, rock her, let her sleep in my arms, my bed, wherever she could and would be comfortable. Everything I did was about her... everything! My life changed. She became my world and I did everything in my power to make her comfortable... no matter how much it changed my life.

Her dad? Hmmm... his life hardly changed. Mommy did everything for her/with her. He didn't respond to her in a way that soothed her. In fact, I remember one time vividly; there had been literally, a period of weeks in which Daddy would come home from work at his regular time, in the same way he always did. She would not go to greet him, not hug him, not talk to him, not play with him, nothing... for maybe the first hour or so he was home. No matter what I did to "make" her do this... she just wouldn't, and if forced would get VERY upset. So, I asked her why. At three years old she told me, "because I have to get used to him first". Boy, did that say it all! Get used to him?! He is your Dad! He has been with you 365 days for 3 years (umm... that is a total of 1,095 days!) Huh?

BUT, through a sensory lens this makes perfect sense! She had been with me all day long. Knowing what to expect, how to interact and play, what would happen, how her sensory environment would be controlled, etc. Now, Daddy is home... things are going to get stirred up here! Uh oh, what will happen now?

Her dad certainly did not respond to her in the ways I would. He would say, "Just let her cry." "She's fine." "She'll get over it". But, she was uncomfortable, she was not fine, she would not get over it. We did try this approach many times, especially at bedtime! It just escalated, and escalated, and escalated. She could not regulate her system. She could NOT calm herself. It was physically/physiologically impossible. She was uncomfortable and she needed help. Traditional methods did not work with her! And our arguments over this became many.

As time went on, she clung to me more and more as I was probably, in reality, the only one who made her feel ok. Not because I was her mom, but because I knew she needed extra help to be in and interact with her world. It is not that her dad didn't care and love her... he did, with all his heart. But, he refused, just refused to ever accept this thing called "Sensory Processing Disorder". To him, to this day, it never did, nor will it ever exist. I never could get him to listen to me. He would acknowledge the signs but never the proper reasons for them nor the "treatment". Nor the "label". Never! And this was/is the best he knows how to parent. That is ok, but it doesn't work for me or my daughter.

Now, here's the kicker. Although he didn't want to hear about SPD, he does parent her (only since I left) in a methodical, consistent, and routine way. This does help her... the consistency, the routines, and the predictibility. But, he parents this way because it is his own personal way of dealing with the world and so far it happened to be working for her.

But, WAS it?

I think back... everything seemed to go well when she is at home with Dad, her grandparents next door, her dog. Then she came to spend the day/night with me and she fell apart. The anxiety, the stomach aches, the discomfort, the fear, the unwillingness to go to school, the all encompassing need for attention and preventative techniques to keep things controlled and tolerable for her. Oh the excuses I used to make for her, about her... no one understood it was different when she was with me, and I was not going to have her feel so miserable all the time. I just couldn't. But, I didn't have support from anyone about getting her help and I just didn't know how to explain it to other people. When I tried, no one listened. No one understood. I was "a bad parent", who was doing her "more harm than good". I was "making her worse". Hmmm... if I only knew what I know now! (Isn't that always the case?)

Months, years went by with no outside, professional help. Just doing what we as parents felt was right... which was completely different at each of our houses. We thought it was more than her temperament, we thought it was the separation. We thought, in time, it would become more tolerable. It didn't.

At 8 years old, she was still sleeping in my bed, still unable to fall asleep by herself, still eating only mommy's mac 'n cheese, still crying with fireworks, still uncomfortable in a shower, still not holding her pencil right, still having trouble socially, still needing me to do her playing with and for her when she was with her friends, still unable to tolerate change, transitions, staying at friend's houses overnight or going camping with me when we would be with other people too etc. etc.

The final straw?

One week in 2nd grade! I will never forget. I was forcing this child to go to school... literally forcing her. She cried, she screamed, she kicked, she refused, she got nauseous, she ended up in the bathroom crying and almost throwing up. She did this every time I had her with me... a few days a week. A kid who used to like school, who was as smart as they come, who loved to learn... now she wouldn't/couldn't handle school! What happened? What was happening? I no longer knew how to help her. I didn't know what she needed or why she was so extremely panicked and anxiety ridden when it came to going to school.

So... down to the school psychologist's office we went. "Please, help me help my child! I don't know what to do. She is so anxious it is destroying her!" I begged for understanding and professional help. After many talks with the school psychologist, her teacher, my daughter and some of her other teachers, I found out what some of the issues were... why she was having such a hard time this year.

And, can you guess what it was? Was it related to her SPD? Absolutely!

You see, she had a teacher who knew what SPD was, had a son with SPD, but she was the one teacher that caused my daughter the most amount of grief and anxiety than any other teacher to this day. In fact, she has LOVED every teacher but that one. Hmmm... how ironic!

You see, the problem was this teacher LOVED to YELL!! She was always angry at the kids, yelled at them, punished them, just unhappy and just had a foul face, and foul mood every day. I really think she wanted to retire instead of teach (she was old enough you know). My daughter is particularly hypersensitive to auditory input... clearly this was not a good match! She was literally afraid to be in her class. I tried talking to her teacher, tried explaining how my daughter's SPD affects her, I asked for help, suggestions, anything! I tried to get her moved to another teacher... no luck. I even spent an hour crying in the principal's office over it. The best plan they could come up with was to give her a softer spoken teacher the following year and make sure her only friend went to that class with her. And I didn't know how to advocate and insist more... I really didn't.

In the meantime, the school psychologist spent several lunch hours with her, as the cafeteria noise, smells, everything was too much for her. She even let my daughter bring a friend with her if she wanted. It helped some. I was also allowed to come in a few minutes early and stay in the classroom with my daughter until school officially started. That helped the transition somewhat as she refused to melt down in front of her classmates. Also, another teacher (the art teacher), who had seen the agony she was going through in the mornings just trying to get to class offered to take my daughter into her room any time she wanted to begin her day and she would help her transition in to class slowly and after doing an activity. We utilized all these resources until the mornings started to flow a little better. But, ask her if she remembers those days, that teacher, that grade, that year, the difficulties she had... you bet! Like it happened yesterday. (She even remembers things that affected her in similar ways when she was in preschool at 3 years old!) I was thankful when third grade started. And what a refreshing new start it was.

I don't think people understand that particular ways of behaving or speaking can affect a hypersensitive SPD kid to the level it can. Believe me when I say... it can! We must understand this! That year was probably the most difficult year of my life... hers too!

That was really the day/weeks/months I decided, we have got to get her evaluated and start some treatment. The poor kid is suffering, more than any second grader should ever have to. You see, until that time, I kind of thought I could "handle" it. I knew what to do, I was an OT, I treated kids everyday with SPD, I made accommodations and modifications to her environment... I thought I was doing enough.

Looking back NOW I wonder... how could I have been so blind? I knew her dad was not on board, but I knew, in my heart, I needed to put my foot down and do this... for her! Luckily, I was working in an SI clinic at the time and was able to get her evaluated without the frustration of trying to find an OT in my area, like so many of you have to contend with. I also knew which therapist would be a good match for her, and had the knowledge and experience I wanted for my daughter.

So, the evaluation took some convincing for dad and some fancy insurance footwork, but we got it done. Did she have SPD? She surely did!! The results were conclusive. Just as I suspected, although there were still some surprises such as core stability that I sort of knew, but didn't know how much it was affecting her. So, it was then that we began treatment. For the tactile defensiveness... of course we did the Wilbarger Brushing Protocol. Did she like it? No. Was it hard to keep on schedule sometimes... well, yes it was.

Here was our first hurdle to therapy. Do you remember I said her dad and I were separated, and he didn't "believe in" SPD? Can you guess how the rest of that story goes? That's right... I could follow through, but the other 3-4 days a week when she was with him... the consistency wasn't there. For those of you who know about the brushing protocol... consistency is key! Success will not happen without it. Eventually, no matter how much I insisted, we had to drop it. He didn't see the point... thought it was kind of weird, didn't "buy into" it, and just stopped doing it.

Ok, well at least I could get her to therapy and make sure she had the other treatment she needed. Did we go? Absolutely. Was it helping? Yes it was, slow but sure. BUT, insurance wasn't paying for much of it, and the money became a BIG issue (as I was unable to work at the time due to an ankle injury and surgery). How in the world was her dad going to keep paying for therapy he didn't believe in nor could he afford? It surely WAS expensive! So... eventually her Dad just said no more. And that was that. Therapy was over. BUT, guess what... the SPD wasn't!

So NOW what do we do? Well... the next best thing was to get some help from the OT at school. At the least she could work on her fine motor skills, poor pencil grip, some playground social issues she was having, some postural stability, etc.. That went on for a bit, but even that ended when the school year ended. She was using the pencil grip at school, her handwriting and tired muscles were improving, and pure "sensory" based therapy was not going to happen at school. In HER case, it was not significantly impacting her ability to function as she HAD made progress through the year.

Third grade came, and she began to thrive at school. She found a couple friends and her teacher KNEW about SPD, believed in it, and encouraged ALL children in her classroom to do some "SPD therapy" throughout the day. Hard, concentrated tasks? Chew gum or suck on sour candy. Stretches throughout the day. Finger wake ups, etc. She also had a gentle, sweet voice which put my daughter at ease from the very first day. She came home from school the FIRST day and said emphatically, "I LOVE MY TEACHER!!"

For the next few years we made as many accommodations as possible, her teachers were understanding and sympathetic to her sensitivities, she began to make a few friends, and she started to find her niche. And, as the days and years of school went on, she got "used to" it. She started to feel the predictability of it comforting. She knew what to expect, knew what she could/couldn't tolerate and why. She avoided what she could and made do with participation in the things that were difficult for her. Her grades were, and still are, amazing! She thrives in her learning environment. Things DO come easy to her (well, except math...a little more effort there *grin*). She has made honor roll every quarter, every year! She is proud, as am I.

So, today, this is where we find ourselves.

With a 12 year old girl who does not have any social skills. She has difficulty with eye contact. When I asked her why it is hard for her to look people in the eyes, she said "because it feels like I am trapped in a room and can't get out". Oh, just broke my heart! She and her dad live in a safe little world, in a comfortable "box" that neither of them have to step out of. He models this for her, she is comfortable with it, and they continue to bury themselves deeper and deeper into isolation.

Her dad? When I recently was discussing some concerns I had with him, I threw out that SPD word. As soon as it rolled off my tongue he literally said, "she does not have SPD!" I said yes she does. He said, "prove it". I said she had that evaluation when she was seven and it says it right there. He said, "what evaluation"? I explained. He still denied it. I sent him a copy of the evaluation, and he still denied it. Said she had those problems because of the way I parented her and because they were things I told them she does all the time, but she doesn't. Huh? What? Ah yes, he doesn't see what I see... and he never will. Obviously, this was not going anywhere. Again, I had to drop it. The arguments never changed anything.


How does her SPD affect her still?

CAN'T fall asleep without a tv or headphones and a portable DVD player.

Has glasses for weak eye muscles and will get frequent headaches.

Severely limited social skills as a result of her hypersensitivities and poor role modeling by her Dad.

Parts of her body hardly ever get washed and build up dirt... her neck and throat area, for example. When she tries to wash it, she cries it pain and says it feels like she is choking.

Can't wear any brand of shoes but one, and they must be sneakers... no other kind of shoe.

Lives in jeans and t-shirts... loves the hand me downs and the "pre-washed"/vintage clothing that is popular.

Will ONLY walk out of the dentist / orthodontist office without melting down if one particular hygenist works on her... otherwise it is a nightmare.

Will only let mommy cut her hair... hair salon with hairdressers that "have long scratchy nails, brush too rough and get hair all over her"? No way!

Loves to run, walk and bike ride, but ask her to do a sit up or push up? Like a limp piece of spaghetti!

Still wraps her thumb around her fingers / pencil so she can write comfortably.

Can not make a phone call without severe anxiety and has only done it twice (besides calling me or her dad).

Turns away or doesn't engage in hugs with family. Would never dream of initiating one.

Difficulty with eye contact.

She does not know how to carry on a normal two-way conversation. I realized recently that she never, and I mean never asks me a question, or other people that she knows. She may respond to your questions if she knows you really well or if promted to, but they may be one word answers.

BUT, the two greatest things that have happened this year, despite these struggles?

She joined the DRAMA CLUB! (oh, SPD kids can thrive here!) And, she sees the Best child psychologist I have ever met... on my insistence with her dad! These two things are making her gain some ground she would never have otherwise. They are finally starting to get into the heart of the social skills / issues. I am proud of the hard work she is doing!! I hope these two wonderful avenues of help and involvement continue.

Knowing what I know now, seeing what I have seen, hearing what I have heard... you all have taught me that therapy would have made a significant difference for her! I know it is not too late for her, but I still can't convince Dad... no matter what. Until he gets on board, SPD therapy won't happen. And she refuses to come live with me, as she would have to leave her dog, her structure / routine / predictability, and her friends behind. This is way too much for her right now, she says. I hope we figure out a way soon to get more help. Right now, her counselor will have to do. Oh, did I mention her therapist knows all about SPD?!!

You know, I am so thankful I've seen with my own eyes the success stories. I have read them. I have witnessed them. I know about them. I did the best I could with what I knew then. So, it is time to give you everything I know now. This is why I continue to do the work I do on this website, with my newsletters, on the phone, in the groups, in the emails you send. I want your story to be much different than mine / my daughter's.

Have I let her down? I really feel I have! But, it was all I knew at the time and it was the best I could do. I can not go back, I can only move forward from here.

I am in the same boat as all of you. Even as an OT, I was never taught about SPD (or Sensory Integration Dysfunction as they called it back then). We had only one day of one class about it. I only learned what I have learned by doing my own research and talking to anyone I can about it. It is not common knowledge. I know you all have had to learn on your own too. No one has handed this information to us. It is an arduous task to figure it all out and thoroughly understand it. But, when our children motivate us, because they are in so much "pain"... we do what we need to do. It becomes a passion. Something "good" out of something "bad".

I have found some amazing friends on this journey... friends I never would have had otherwise. For that I am thankful! I have found the knowledge I need to find to get you started on your journeys. For that I am thankful. I have been blessed with the opportunity to be a part of an amazing community, all walking the same path. Is everyone's story different? Yes, it is... but we all have this one thing in common. For that I am thankful.

Where would my life have been without a beautiful daughter who happens to have SPD? I don't know, but I am thankful for where it is now. I wouldn't change a thing... because I have found my home... with all of you! Thank you for being part of my family!

Until next time my friends... take good care.


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