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This post has been a long time coming. It’s been hard for me to find the words to say, because honestly, I’ve had a hard time coming to terms with this. As many of you know my son was tested for Autism. I blogged about it here awhile back. I drove 3 hours with a friend to see a very good doctor who told us there is no way he has Autism. I was very happy for the good news. However, the doctor told us that all of Adam’s problems were because of something called SPD (Sensory Processing Disorder).
Since the day Adam was born there have been so many puzzle pieces, so many things we just had no clue about. We wondered if his behavior or the strange things he did were normal or if it was different. Being new parents and this being our first child, we had no idea. So we waited. And slowly over the past two years with the help of doctors and therapists we have been able to put the puzzle pieces together.
Now that we know what it is, we are able to help Adam more thoroughly, but even though he is not autistic that does not mean that he is not different and that we still don’t have a long way to go with him.
“Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.
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. 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.” –http://www.sinetwork.org/about-sensory-processing-disorder.html
Adam’s SPD affects all of our lives here at home. As I’ve blogged about before -(My Little Boy is in Therapy, A Mommy Moment, Autism?, and Feeding Therapy)- Adam has eating problems, sensory problems, and speech problems. Basically, he does not talk, eat (much) or like the feeling of most things.
“Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. These are the “floppy babies” who worry new parents and the kids who get called “klutz” and “spaz” on the playground. Still other children exhibit an appetite for sensation that is in perpetual overdrive.” –http://www.sinetwork.org/about-sensory-processing-disorder.html
The picture above shows the many symptoms kids with SPD can have. Here is a list of things from the picture above that Adam does have.
“I hate having my hair washed, brushed, or cut.” – Adam loves to help brush his hair, but when it comes to baths , that is a different story. Ever since Adam was a baby he hated baths. I didn’t get what I was doing wrong. He would scream and scream and scream. I worried the neighbors were going to think I was torturing him. Now that he is older he tolerates them. He does enjoy playing in the tub, but still hates to have his hair washed.
Haircuts are also a difficult thing for him. Sure a lot of kids don’t like haircuts, but with Adam it’s times 10. It was so bad we stopped taking him to the salon. The poor lady there just could not do anything with him and it was embarrassing to us to have him screaming and everyone looking at us. Even sitting in our lap with his blankie, a book, and cell phone games, nothing would distract him enough for her to cut his hair. Neither of us knows how to cut hair so during this deployment I asked my friend’s husband to cut Adam’s hair. My friend and her husband come over and we put Adam in his booster seat. One of us hold his hands while the other holds his head and body still. Her husband cuts. Yes, it takes 3 people to cut my son’s hair.
“I cry and shield my eyes from bright light.” Adam has always been sensitive to bright lights. He hates the sun, and will scream in the car at times if it is in his eyes. Even lights in the morning make him upset and he will cover his eyes with his blanket until he gets adjusted to it.
“I am a picky eater; I resist new foods and textures.” Adam is not just a picky eater. It is so much more than that. I get people come to me and tell me about their brother’s cousin’s friend whose son only ate peanut butter and jelly sandwiches for the first year of their life and how one day they just magically stated eating all other foods. I don’t know anything about them or their son, but I do know that Adam is not him. Adam has a problem that prevents him from eating properly and only through therapy and work will he eventually start eating more foods. he may never eat as many foods as the rest of us, but the goal is to get him to a healthy start.
“I complain about tags in my clothing.” Adam will sometimes pulls at his tags and he does not like tight clothes. He will pull at them and cry. Sometimes certain fabrics will bother him as well.
“I seem to be unaware of normal touch or pain; I often touch others too hard or too soft.” We started noticing this when Adam was pretty young. I remember him crawling around and accidentally hitting his head very hard on one of our end tables. He didn’t even blink an eye, and kept on going. I had run to him thinking it was going to hurt because he had banged his head pretty hard, but he didn’t even seem to notice. As he got older and a couple more accidents happened, and he never cried I started to wonder what was going on. Now that we know that this is one of the symptoms, we have to learn to be careful with him. If he can’t feel pain as well as others he could burn himself and not realize it at first. He could really hurt himself.
He also has problems with touch. He does not understand at times that he is too rough with us and other kids. Adam throws, hits, and pushes, but he thinks it is all a game and that he is just playing. He doesn’t understand that people and children don’t like these things and that you have to be gentle. I try and try to teach him, but sometimes I have felt like it is a lost cause. No matter what he still is very rough and throws and hits.
“I have poor gross motor skills, such as running or riding a bike.” Adam is too young to ride a bike yet, but he used to have problems with running. Adam would run smack into walls or not be able to stop himself. Through the therapy and such he has gotten much better in this area. He also has trouble with other motor skills such as climbing. Adam had a very hard time learning how to climb and did not like playgrounds because of this. He has gotten better in this area too.
“I always walk on my tiptoes.” Adam doesn’t have this problem, anymore, but that is how he used to walk when he first started walking.
“I am overly sensitive to loud sounds such as vacuums and blenders.” Adam is scared of loud noises at times. He hates the vacuum, but I know that some kids are just scared of vacuums. Sometimes if we are out in public he will cry if there is a very loud noise.
Some other things are:
Textures: Adam does not do well with most textures. Thing such as grass, sand, play dough, shaving cream, tennis balls just to name a few random textures they have used in therapy. He used to hate all those and cry and cry if he had to touch them or get near them. He is much better with the therapy now and will occasionally play with and touch these textures,
Speech: Also his speech. He doesn’t talk. Sure he makes sounds, he gurgles, but as an almost 2 year old his speech is mostly non-existent. He occasionally says “Dada” and “Mama,” but sometimes I don’t know if he just says them because he can or because he realizes we are Dada and Mama. He also recently started saying “up” or “bup” occasionally. We are still working on it.
These are just a few of the ways that SPD affects our daily lives. For the past 6 months I have been dealing with this alone. While my husband is deployed I take him to therapy. Three different therapies in one day. Speech, Feeding, and Occupational. It’s a lot to take in as a parent because each therapist is telling you how he is doing, how you can help him at home, and new things to try.
At home, I am the only one who can put these things into practice. Things like teaching my son sign language so he can communicate, sitting at the table for long periods of time trying to get him to eat. practicing speech with him, giving him sensory activities so that he can learn and grow. On top of everything else I do.
Every day I look and see how different he is from other kids. I am sad when he can’t talk or communicate what he wants. His frustrations upset me because I am frustrated for him. He wants talk, but just can’t. No matter what I say here please understand I love my son so much. My pain is because I love him, and wish the best for him. I hate to see him hurting and struggling, while others kids are running around talking and doing normal things. It’s hard.
This past weekend I tried to comfort my son for 2 hours while he cried. He was sick sure and had a fever, but something else was wrong. All his pointing and gesturing could not tell me what was going on, and so I tried for 2 hours to understand and to try to communicate somehow and figure out what was going on. I was at my breaking point. I just wanted him to tell me what was wrong.
I watch other kids and how they eat normally, and I cannot even imagine what that would be like. Every single day is a struggle. A struggle to get Adam to eat food. A struggle to get him to eat more than crackers. A struggle to sit there and watch him throw food on the floor after working hard to prepare it in a way that the therapist tells me.
And when he gets sick he doesn’t eat at all. Sure he drinks milk, but he won’t eat. It’s so incredibly hard and scary to see your child not eat. Knowing there is nothing you can do but continue to offer food and wait until he gets hungry again. This past weekend Adam went days without eating anything but a couple of crackers. DAYS.
People wonder why Adam is sick so much and honestly I wish I had the answers. No one wants to see their child sick and suffering. I would gladly take on his sickness and bad health if I could. I believe he gets sick all the time because he doesn’t eat healthy enough. His immune system is not where it should be. The doctor actually had him tested for several things because he is sick every couple of weeks. It’s almost like clock work. It’s frustrating to me because I feel helpless. I feel that there is nothing I can do.
A couple of months ago Adam was in the hospital because he was very very sick with the stomach flu, he could not keep any food down and he would not drink anything. People suggested popsicles, and pedialyte, but the facts are that he doesn’t eat or drink those things. Adam does not drink juice, he does not drink pedialyte, he does not eat popcicles. So when he’s sick and not drinking the only thing I can do is sit there and keep offering him water.
During that time he was so sick, I found out that there is flavorless pedialyte that tastes and looks like water. Praise God I was able to get him to drink it! Sadly, I could not get him to drink enough to stay out of the hospital for dehydration. Many times when he has been sick this has been the case. There have been more than several times where I was very close to taking him to the hospital for dehydration because he was sick and would not eat or drink. It’s scary. I never know what’s going to happen.
When he was in the hospital they did some tests. One of them came back with elevated liver levels. I am not sure what this means. I only know the doctors were concerned. They said it was most likely from the dehydration and that we would check again in a month. Well last week we did another blood test. I got a call saying they were still high. I was a little shocked. I had had multiple doctors assure me it was just the dehydration.
Yesterday he had a liver ultrasound. Everything came back normal, however his liver levels are still elevated and we still need to find out why. So now his pediatrician is referring us to a GI specialist. I know in my heart this just has to because he is not eating right. It hurts me so much to see this happening. I feel like there is nothing I can do and that we are at a stand still. I can’t stand to see him get sick all the time. And we’ve had the doctors tells us his not eating properly can interfere with his growth and development.
This past weekend I was at breaking point. Sitting at home alone with my sick son on Easter Sunday, I told myself there has to be something else we can do. I called the therapist to speak with her on Monday. We talked for awhile. She told me as far as the feeding therapy she is doing everything she can. Progress can be slow, but to me I don’t see much progress at all. Adam has tried some new foods here and there, but he does not eat any of them. He still lives on crackers, and the occasional yogurt and frozen waffle.
She told me there is another program that is more intense that is done somewhere else, but I don’t know if we are ready for that. Right now I have a lot on my plate. It’s hard putting in everything from therapy into action at home, especially when I’m seeing little results in some areas. At this point I am hoping that once his daddy gets home from deployment things will get better. I talked to therapist and we are probably going to add on another speech session. We are also getting his hearing tested in a few weeks to rule out hearing loss as a reason that he doesn’t talk. Sometimes he seems to hear well, and other times he does not respond at all.
All we can do is pray and see what the next 6 months bring us. I sometimes wonder why God is allowing this to happen to my little boy. My heart aches for him. I know that God would not have give him to us if we could not handle it, but sometimes it’s hard. I just feel so helpless.
So if you think of us please pray.
“Children with Sensory Processing Disorder often have problems with motor skills and other abilities needed for school success and childhood accomplishments. As a result, they often become socially isolated and suffer from low self-esteem and other social/emotional issues.
These difficulties put children with SPD at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, poor self-concept, academic failure, and being labeled clumsy, uncooperative, belligerent, disruptive, or “out of control.” Anxiety, depression, aggression, or other behavior problems can follow. Parents may be blamed for their children’s behavior by people who are unaware of the child’s “hidden handicap.” -www.sinetwork.org/about-sensory-processing-disorder.html
This is a video of my son trying to talk last month.