Sensory Processing Disorder and Down syndrome!

Help raise awareness of Sensory Processing Disorder and Down’s syndrome! SPD is not just related to Autism!

My son has been fighting this battle since we first discovered he had SPD 6 years ago. This has made it a challenge for him in his learning, his social skills, and his over all happiness. It has been a challenge to us since we are unable to provide him therapies outside of school and home.

What is Sensory Processing Disorder?

Does your child:
- resist messy play or maybe doesn’t realise they have a dirty face?
- dislike seams in socks or refuses to wear certain materials?
- avoid playground equipment – maybe even fearful of it?
- crave movement, is full of excessive energy?
Maybe your child is constantly crashing, stomping, deliberately running into things? Or is your child seemingly unaware of where their body is in relation to other objects, maybe they are stiff and uncoordinated or don’t know how hard to push or pull an object. If so it is likely your child has some degree of Sensory Processing Disorder.

Sensory Processing Disorder (SPD) co-exists with many learning disabilities in particular Autistic Spectrum Disorder (ASD). However having SPD does not necessarily mean a child will be on the autistic spectrum. Basically it describes an inefficient sensory system (and is also known as sensory integration dysfunction). Although many of us are familiar with the traditional five senses; sight, sound, touch, taste and smell – there are in fact seven senses – the other two are: vestibular (movement and gravity) and proprioception (muscles, joints and ligaments).

If you watch a small child learn a new task, initially a great deal of concentration and effort are noted. The task appears clumsy but as he continues to “practice”, his skills become more proficient and not only has he mastered the task but will continue to make it more challenging. This is sensory integration.

A child with a sensory disorder gathers information from sight, sound, touch, movement and pull of gravity like any other child. However, when the data enters the brain, it is not organised or processed correctly. As a result, the brain sends out an inappropriate response. The brain can respond in two ways: Hypo-responsive – in spite of large amounts of sensory input, the brain fails to register and doesn’t respond to input and Hyperresponsive – the brain “short-circuits” and registers sensations too intensely. Children can experience both responses and this impacts hugely on behaviour and learning. Some children go into the “Flight or Fright response”, the brain records this as danger and the child reacts by screaming, pulling away, or avoiding this touch or sensory input. The response is comparable to walking down an unfamiliar dark alley at night. All of our senses are on “alert” in order for our body to respond to danger.

Finding out about SPD has been a journey in itself for us. I had always thought that Christopher was “different” than other children with Down’s syndrome, he has always found it difficult to settle and learn, he has strange repetitive habits, he is very tactile defensive , he moves constantly – touching everything and everybody to the point of annoyance, so much so that he has been diagnosed with ADD and placed on medication.  He has experienced such challenging behaviours as aggressiveness and becoming harmful to himself and others. It is worth pointing out that many children with Down syndrome experience the behaviours I’ve described above but they are able to regulate them or some grow out of them (some of the behaviours described are developmental and occur in all young children anyway).

Keep in mind, sensory processing functions on a continuum.  We all have difficulty processing certain sensory stimuli (a certain touch, smell, taste, sound, movement etc.) and we all have sensory preferences. It only becomes a sensory processing disorder when we are on extreme ends of the continuum or experience “disruptive, unpredictable fluctuations which significantly impact our developmental skills or everyday functioning” www.sensory-processing-disorder.com.

Bottom line is everyday is a challenge for Christopher and his days rely on how his body is functioning on that particular day.

For a long time I thought that Christopher had a dual diagnosis of DS/ASD I still believe that he is somewhere on that spectrum. However we now now that his major barriers in development are this SPD. Sensory Integration (SI) Therapy provided by a fully qualified Occupational Therapist specialising in SI is a necessity. However, we all know that unless properly insured this is not always possible. It is up to the parents to become educated and incorporate it into everyday living. It is all about movement and regulating the body’s needs.

SPD is  misunderstood and very much overlooked by the medical community in relations to children with Down syndrome. It is a condition which can occur in children with and without learning disabilities. If you have never read  “The Out of Sync Child” by Carol Stock Kranowicz I encourage you to do so. Many professionals have often not heard of this condition which can be extremely frustrating. Many believe these behaviours are part of a learning disability (Down syndrome) and it is not necessarily something separate. I believe differently.

We have recently been told by some wonderful professionals at Hope Haven Children’s Clinic that in order for us to begin addressing Christopher as Down syndrome we must address the immediate sensory issues. In order for him to function in society he must be able to control his impulses in public, in school at home!  Parents and professionals need to become “sensory smart” and recognise the signs of of SPD and how to address them. Unfortunately behaviour which begins as sensory then becomes a learned behaviour and Christopher will use this to his advantage e.g. screaming, throwing himself on the floor, hitting and banging an object or himself, to gain attention or distract someone. Therefore it is imperative behaviour specialists also need to recognise sensory integration difficulties and be able to separate what is sensory motivated and what is attention seeking/demand avoidance.

This is part of the reason I’m trying to highlight this issue and perhaps raise the awareness with professionals and with other parents of Down syndrome children who are faced with this. There is a lot of information out there that can help determine whether your child might have Sensory Processing Disorder; many children with DS will have some sensory problems but the main question is whether it disrupts everyday life. These can be found on SPD network websites and also in “The Out of Sync Child” or “Raising a Sensory Smart Child” by Lindsey Biel.

I will be adding additional information on my site as well as a whole page just on SPD and Down syndrome. Please watch for it in the near future.

My Christopher is the sweetest and my loving child until that SPD shows it’s ugly face. We try and get through the challenges his SPD brings and also the behavioural issues that go with it. At times it is a hard lonely road in particular because sometimes no-one seems to understand it and explaining it can be confusing! Even within family it is a hard thing to understand.

We have a long road but I know with my family, wonderful friends, and his fantastic teacher we can get control of this and help him lead a better quality of life.

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10 thoughts on “Sensory Processing Disorder and Down syndrome!

  1. Christina
    July 7, 2014 at 7:04 pm

    I’m trying to find out about SPD, Ds and sleep disorders. My son is 4 1/2 and doesn’t have many of the usual SPD traits, but he does like to lay on the floor and wave his arms and legs. It used to seem he did it when he was bored, or while driving in his car seat, but now he does it even in a crowded room. But that’s the least of my problem. He is so restless while sleeping, constantly swinging a leg back and forth, or an arm, etc. We’ve done sleep studies, EEGs, labs, you name it. Do you have any experience with this? Thanks!

    1. downsyndromenwfl
      July 19, 2014 at 5:14 am

      I do, it sounds like my son. What we have figure out is when he lays down on the floor in the strangest places it is due to sensory overload. We have figured out that giving him a space and something to occupy him with helps. Such as a favorite toy or music. I used to try and fight it and make him get up, but unless it is really bothering others or he will be in an unsafe area, I just give him those few minutes and he will be ok. Just the other day I was out shopping at Target and he sat down in the middle of the store by one of the racks. I just stood near him and checked out what was on the racks, gave him a few mins, and then asked him to get up. He was ok after that. Sleeping is an issue with us as well and very common with those with Down syndrome. You might want to try a weighted blanket if you have not. You can do a Google search and a ton of information will show up. http://www.weightedblanket.net/ is one site that I have come across over the years with a great reputation.

      My son gets up at least 5 times a night sometimes even more. It is a constant issue in our house. We have tried new blankets, bedding, ect. We also have tried sleep aids and still today we are giving him Melatonin. Trial and error is your best bet but I would first check your blankets and bedding to see if they are causing sensory issues. I hope this helps, please reply or contact me directly if you have further questions. Thanks for visiting Voices For Down syndrome!!!

  2. October 21, 2013 at 4:58 am

    Thank God that there are other parents like me. I am the proud mother of my 33 year old son Michael. Michael has Down Syndrome, Autism and recently discovered SPD.

    Cutting his bear, hair and nails, brushing his teeth, bathing, drying his body, certain clothing, putting shoes or socks, acute problems going outside, new places, supermarkets, hospitals, doctors appointments, noisy crowded places, bright lights or sunlight, shinny floors, hugging and he then quickly pushes you away, not been able to look at you, holding on to a chair or us as his life depended on it and fearfully when going to a new place and even places he is known, gagging when eating certain textures or smells. All of the above have been a nightmare for us to see him trying to cope with all of this issues and not knowing that this was actually a disorder. Asking myself how or somehow I did something wrong to cause all this behavior. Some family members and others thinking that he is just spoil and hard headed. I knew something was not right and as he gets older it has become more difficult.

    About 4 months ago we cut his bear, hair and nails.His 32 year old brother, my son in law, my sister, my oldest granddaughter holding him down while I attempted to cut his hair, bear and nails. We struggle with him for two and a half hours. He appeared to be in acute pain and petrified. He is very strong. Jokes aside he has super human strength. At one point his eyes started to literally bulge out his sockets and his face appear to be in such pain and fear. I screamed stop! I held him for a while while in tears and promised him no more cutting his hair, nails or bear. Unless is OK with him. He now looks like a member of Duck Dynasty and his nails are so long in one hand. I somehow manage to cut one hand while he was sleeping. This incident prompted me to start searching in the internet for answers to our dilemma. I was so happy when all this information popped up. After reading numerous articles I began to cry and felt guilty for not researching previously and angry that there were no answers from doctors and professionals that I have consulted for years over this issues. Feelings of guilt, crying for my baby that he was not able to communicate and tell me what pain he has endure for so long.

    I asked his doctor to please give me some type of sedative in order to be able to groom him. Haloperidol was prescribed to no avail. Currently he does not want to shower for almost a week and has been extremely sensitive to touch. I am able to manage with prayers and just looking at him gives me all the hope and endurance.

    The Down Syndrome part of my son is affectionate and loving, the autistic side of him is in his own little word at times but, his sensory problems are so painful to watch and I feel helpless.

    My prayers to all our beautiful unique children that we have been bless with and to all the very special parents. May God continue to be with us.

    1. downsyndromenwfl
      November 4, 2013 at 6:11 pm

      Thank you for sharing your story Marysol. Sounds like you are going through everything we are attempting to prevent.
      Just a suggestion have you attempted any type of behavior therapy for him? I would also seek out someone who is an expert with Sensory Processing disorders. My son is extremely tactile defensive and it makes bath time very challenging. Please do not hesitate to contact me if you need further support.

  3. Margaret
    June 12, 2013 at 2:56 am

    I also want to thank you for this article. We live in Puerto Rico where there are about a dozen OTs with knowledge in sensory integration on the whole island, thus sensory issues are hardly ever addressed in therapy. It has been a heartbreaking process for me to have had to assume all therapeutic endeavors on my own without direct support of a professional. My son is also he odd kid with down syndrome because of his sensory issues. It has been also a great challenge to get our families to understand that what he is doing is not misbehaving, but it is so hard for people to accept SPD. I wish all of you, who love a child with down syndrome and sensory processing disorder, much strength and courage. You are not alone.

    1. Debra Forand
      June 12, 2013 at 8:00 pm

      Margaret,
      Thank you for your comment and reply! We hear about it a lot with those with Autism, but there is still not enough support and information on SPD and those with Down syndrome.
      Please keep the comments coming as each one provides another level of support to that parent looking for information.

  4. seo
    September 6, 2012 at 6:19 pm

    Muchos Gracias for your post.Much thanks again.

  5. julie
    June 7, 2012 at 11:08 am

    Finally I feel amongst people who understand my son, our life – the total isolation which was looming. I have tried through consultants to be heard, only today did i realise from a new professional there was another issue but she hadnt seen it in a child with down’s syndrome. I had thought it was me, that I was a bad mother, but now I realise the issue has a name, a label and now I am not alone.
    From the bottom of my heart thank you for this

  6. Shelley
    April 12, 2012 at 6:27 pm

    I too have a child with Down Syndrome and sensory issues. And have avoided many Down Syndrome community functions…because people would stare at my always moving, impulsive, distracting child.
    My daughter is a bright, loving, and sweet girl…but the sensory issues have gotten in the way of learning, socializing, and contributed to many unwanted behaviors.
    It is difficult to address her sensory needs on a daily basis, and also to convince the school that P.E is not the same as sensory break time.
    I understand where you are coming from. My daughter also has type 1 diabetes, and the school is always trying to tie her sensory issues to her blood sugar levels.

  7. February 8, 2012 at 2:12 am

    Simply want to say your article is as astonishing. The clarity on your publish is just excellent and i can think you are knowledgeable in this subject. Well with your permission allow me to grasp your feed to stay updated with coming near near post. Thanks one million and please carry on the rewarding work.

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