How do I explain what my son needs, like at Sunday school and AWANA, without scaring people to expect the worst, or setting them up to let him get away with everything, using Sensory Processing Disorder as an excuse for bad behavior.
I think about this question a lot. I don’t want Bubs to have special treatment but I want teachers to understand that sometimes special actions need to occur to help Bubs be able to succeed.
Except for on this blog, only immediate family and our OT know that Bubs has Sensory Processing Disorder. We have kept it a secret and hope to be able to forever. We do this because we don’t want expectations to change for Bubs. We don’t want people to look at Bubs differently (thus the nicknames for our kids on the blog).
I want to preface my next comments by saying this: Bubs does very well. As with many SPD kids, the parents see the worst. 99% of people would not think there was anything wrong with him. I think this is one of the hard things about getting help because people don’t believe you. It is at home that Bubs totally loses it for hours on end sometimes.
My cousin teaches Special Ed. She told me that Bubs won’t have behavior problems at school but that our afternoons will be pretty hard. He will work SO hard to keep it together at school that once he gets home and relaxes it will be rough.
Not everyone has this same situation. Had we not gotten amazing help, we maybe would be facing this too.
Praise God that I have learned some easy, simple ways to prepare Bubs for company to come, going to a restaurant, and going to church. Visit tomorrow for more detailed tips and suggestions.
Until then, please let me know your suggestions, questions, and comments.
This post is encouraging for me. Only a few weeks out from the diagnosis of SPD, my head is looming with questions and confusion. I wonder often what to tell people. I have no idea what to say because I don't fully understand everything myself.
I have a question:How did you get an understanding of SPD?? I have 3 books that I just don't have time to get through right now, but I need some answers.
Thanks for responding, I'll be checking back for sure. Glad to hear that you have the same experience as far as 99% of people not even realizing that there is something different. I'm always told that he does well at church, etc. Sometimes I wonder if people think I'm making the whole thing up. I don't talk about it much, and pretty much only my Bible Study group knows about it, but I debate about whether his teachers need to know. If it would benefit him, or not. Honestly, I think my main reason for telling those that I have told is my hope for some support and understanding. But from those who haven't experienced SPD that's hard to get.
LaToya, the books can be a bit overwhelming huh. I think the single most useful resource for understanding your child (SPD can look VERY different from one child to another) is an Occupational Therapist. Find one as soon as you can and ask TONS of questions! They can look at your child's PARTICULAR areas of concern and give you SPECIFIC suggestions and explanations rather than sorting through all the POSSIBLE symptoms your child MIGHT have listed in the books. And secondly, trust your instincts. I feel that I understand my child's struggles and sensitivites better than anyone else simply because I know him best. I'm sure you will find the same to be true as you pay close attention to the "why" behind the unusual reactions. Observation and experimentation with different therapy activites is the only way to figure out what will help YOUR individual child. Think of it as an exciting challenge to put all the puzzle pieces together. It is very rewarding to learn what your little one needs based mostly on your own knowlege of WHO he/she is, not WHAT they have (SPD).
I could definitely use some helpful hints for church, during the service. We have Children's church during the sermon portion, but even just the songs and announcements part is horribly difficult for us. He doesn't seem to be ABLE to control himself to be quiet. Last week he yelled out "All Aboard" in the middle of a song! Got in trouble for that one. We do discipline him (a trip to the bathroom, if you know what I mean) when he is disobedient or intentionally misbehaving, but I hate to make him miserable with unrealistic expectations. I'm considering trying a different church just to see if it might keep his interest at least a little, or be slightly louder so he's not so noticeable. I want church to be a positive place for him, not a morning of torture, filled with don't do this, don't do that. I don't know what to do.
LaToya and Heather – Thank you so much for your comments and questions. I appreciate the love you have for your children and the dedication you have to do everything in your power to help them. God bless you for that. You both have brought up some great questions. In the next few days I will be posting about these. I pray that they will help you in your desire to raise up a godly child.
I,too, have a child who was diagnosed with SID (now called Sensory Processing Disorder) and Asperger's Syndrome as a very young child (2-3 years). I can tell you it DOES get easier! The kids learn to cope and function without it being a disruption.
You are right, good OTs can make a HUGE difference! 2 of my sisters are OTs specializing in sensory issues. They both highly recommend the book "Raising A Sensory Smart Child" by Lindsey Biel. There is also a facebook page for the book/group.
Hope this helps!
I appreciate your post. I hope that in a couple of years I may not have to explain my son's SPD to teachers anymore either due to the hard work we are putting in now. However, as of now he is only 2.5 and while he is not a behavior problem, he is markedly different from his peers at church and Mother's Morning Out and I felt it was in his best interests to explain how he experiences the world and how they can help him participate fully in it while in their care.
I typed up a one-page sheet that listed 7 senses (I left off the interoceptive for now) with a short paragraph after each, written from his perspective. For example, for taste I wrote:
"I have a hard time accepting new tastes and lumpy/grainy textures in my mouth because my mouth is super-sensitive! It scares me to try something new or even have it offered to me because the sensations in my mouth are so strong. However, I do love to eat my favorite foods and chew on safe objects that make my mouth feel good."
I got much positive feedback from this simple explanation that helps his teachers "get inside" his head and body and address his needs so he can participate fully like his peers and have a postivie experience (and can be held to the same standards). Since he cannot speak for himself and needs help carrying out regulating activities at this stage, I think it was wise to explain. Hopefully, in 2 or 3 years I'll no longer need to, but if so, I am glad to be my son's advocate in any situation.
Hi,
I am new to the bloging world and just trying to network with others who lead simular life experiences as ours. Please chack out my blog as well.
Thanks,
Ginger