FAQ
Top Ten Questions asked when first finding out your child has been diagnosed with SPD:
- What is it?
There are really two questions here:
How do I know my child has SPD and not something else like ADHD with some sensory issues?
I recommend you find an Occupational Therapist (O.T.) with Sensory Integration Praxis Training (S.I.P.T.) and/or a mentorship program with Dr. Lucy Miller (www.spdfoundation.net). These qualified professionals will either do a ‘Winnie Dunn Sensory Profile’ or the new Sensory Processing Measure (SPM) (www.ateachabout.com). As a parent, I personally prefer the SPM because it brings together all who come into contact with the child: parent; teacher; school bus driver; lunch/cafeteria worker; and any other professional working with your child. It also has a ‘social interaction’ piece and a praxis questionnaire. So often these pieces are ignored and should absolutely not be.
The second question is ‘What is SPD?’:
We are all sensory beings and all have some idiosyncrasies. The difference between being a little sensitive and having SPD is when our sensory systems inhibits one’s development. If you are a child who can’t sit up because of a postural disorder that has yet to be assessed, your main concern is holding your body up long enough not to fall out of your chair. As a child, you cannot concentrate on holding your body upright and try to concentrate on printing as well. After a while, as a child, you just simply give up...or for those who see the behaviour, they may say “the child is just being defiant”. You cannot pay attention to the teacher’s instructions if all you can hear is the buzz of the fluorescent lights above you. Or pay attention when you are overwhelmingly aware of the stench of the lunch garbage and praying you don’t throw up.
I have spoken to some specialists who are concerned that everyone is going to come in and say their child has SPD. Completing a sensory profile will provide accurate information about the child’s needs, either confirming the diagnosis or not, and allowing for appropriate ‘next steps’.
- Is it curable?
SPD is not curable but the right treatment(s) will help regulate the nervous systems to allow learning to begin.
- Is it treatable?
Absolutely! I always reassure all parents by having them go to http://www.spdfoundation.net. Dr. Lucy Miller’s website brings great hope, as does Kari Kindem at www.spdbayarea.org. Her yahoo group brings great encouragement and empowerment into this disorder.
- Who do I turn to for help?
I always recommend seeing your paediatrician first to rule out other issues. However, until it is recognized on the DSM (Diagnostic and Statistical Manual) the medical world cannot diagnose your child with SPD. They may concur with you, but they cannot diagnose a disorder that is not yet on the DSM.
My greatest success stories come from families who have gone to an O.T. trained in S.I.P.T. therapy. The critical piece is to have all go to http://www.spdfoundation.net. Dr. Miller and her team of researchers are working night and day with minimal financial support to get our children the chance of a proper diagnosis.
- Do we have any insurance coverage for this?
Unfortunately, to date, because this disorder is not yet recognized, there is usually no coverage for it in government health plans. However, some group insurance plans do cover Occupational and/or Physical Therapy as well as naturopathic treatments. Unfortunately, much of the financial burden is usually left to the families.
- Will this go away on its own?
SPD never goes away. However, with the right tools and understanding both at home and at school, our children can thrive and become incredibly confident. Confidence and self esteem are the greatest gifts parents and educators can give a child.
- Is my child going to have a normal life?
It depends on how you define normal! I have yet to have a normal life, both because I have SPD, but also because my children are so very gifted. They are incredibly intelligent, both with high I.Q.s (intelligence quotient). But what I believe in my gut and from my experience is that they have a much higher E.Q. (emotional quotient) and as long as I keep the doors of collaboration open in each and every new school year, we will continue to provide the most successful tools for our children. So no, they will not be ‘typical’ and my reply to that is ‘Thank God’! I really like who I am and am so grateful that I am so sensitive to not only myself but to others. It makes me a really nice human being.
- What do we tell our families?
I advised our families to research the disorder, and then allowed them time to process. My husband and I pulled back from our families at first as we had to make sense of all that was happening. For all parents who have children with different abilities that are hidden or invisible, it is hard enough to see and organize it yourself. Then to have to deal with the ‘rolling eyes’ of society when you tell them what your child has, is almost too much to bear.
Too often we heard “they will just grow out of it”, or “this society is so quick to find a label, here is another one”, or “he is just like Bobby when he was younger and then turned out just fine”. The old saying ‘take care of yourself first’ is absolutely true. We stopped the family gatherings and socializing and gained control of our son’s environment. Now, many years later, we have the most amazing family love and support. We would not be this strong and this loved without them. When we made sense of this, then they did.
- Do the other siblings have this?
Quite often you will see this - Dr. Miller says it seems to be proving to be genetic. However, it would be so wrong of us to say a child has SPD without seeing an S.I.P.T. qualified O.T. and your doctor. Like any other disorder, individual differences can lead to varying expressions of for the disorder.
- What is my first step?
Look up your provincial Occupational Therapist professional association. We have seen a huge difference in therapy when the O.T. has had S.I.P.T. training or a mentorship program with Dr. Miller. We are seeing more and more O.T.s with one or both of these. We always recommend seeing your family doctor and/or paediatrician as well; there can be underlying medical issues that also need to be addressed. My other suggestion is to join a sensory yahoo group. I belong to both the parental support group with www.spdfoundation.net and Kari Kindem’s group at www.spdbayarea.org. As well, there is a wonderful yahoo group out of Baltimore Maryland at www.sensorystreet.com, and one at www.spdparentshare.com, started by a great mom who has done so much to join families across the world with one another. It is parents and families that are changing how this world treats our children and their disorder, and there is no one that deserves more thanks than Dr. Miller. Your support of her foundation and ours will bring SPD to the surface, ensuring that all of us suffering with SPD have a better life.