Sunday, November 25, 2007

Can you help me?

This is a little out there from the day to day cards but today I need your help.

Life has been a little up and down recently. Some of you know that our son was recently diagnosed with Sensory Processing Disorder. SPD is a disorder of the brain that affects developing children and adults. People with SPD misinterpret everyday sensory information, such as touch, sound, and movement. They may feel bombarded by information, they may seek out intense sensory experiences, or they may have other symptoms.
If you don't know, SPD symptoms often fit within the autism spectrum. Our little boy struggles with day to day things like listening, sitting still, socialization and dealing with "sensory" things that bombard him like the sun/light, noises both loud and quiet, food/clothing (texture) and and playing with others. He is LOUD and hyper, he can be aggressive, he is impulsive, he often suffers from sleep deprivation, he is a picky eater, he has a difficult time listening to others as well as sitting still, he has problems with his fine motor skills and he is gifted--especially in memory retention, math, science and words. I know many people suffer from the issues above but remember these behaviours occur when sensory things are in process. For instance, the loud noises from musical instruments sets him off. The lights in the classroom make it VERY difficult for him to learn anything during the first 15-20 minutes in the classroom every day (we have charted his behaviour and it is almost always a problem first thing in the morning). He gags and gets physically sick if a food with texture--peach, apple skin, carrot, cauliflower, raisin is placed in his mouth. He often hits himself after he hears loud noises or reacts aggressively to people who touch him without warning.

Imagine if you will, that you fit that bill. From the outside, he looks like he has behaviour issues, from the inside, he is fighting every single thing that he takes in from the outside world. He does the things he does because his "brain tells him too" (straight out of his mouth).

In the last 3 weeks, I have been reading as much as I can to learn about SPD, what I can do for my son and how to help his teacher. As a teacher myself, I remember having these exact kids in my class and let me tell you, you have your work cut out for you. We have a lot more testing and help to come including more visits to the pediatrician and doctors as well as the audiologist. In the new year we will be seeing an occupational therapist and a behaviour specialist.

I have decided to share this tidbit in my life to help educate you as well as to be educated. I know for a fact that there are others of you out there that either have a child with SPD or are person with SPD. I invite you to share anything you know about SPD or links that you find useful (trust me I have looked at many). I have so much to learn and in many ways feel so alone in this journey. It has been a hard fact for my DH to accept but he is coming around. Just remember, the next time you see a child acting out--doing things you might typically label with bad behaviour--it may not be his or her fault.

Thanks for listening to me ramble today. It has been hard for me to concentrate on my reporting (report cards) and papercrafting because my insides hurt...I just want to make things better for my son.

Alli

24 comments:

Lorie said...

Oh, my Alli. Thank you for sharing your struggle with us. I have heard of this disorder but have never had any actual experience with it. If I come across something I will certainly let you know. Please know you are in my thoughts! Hugs!

Donna said...

Have you read these books?

Ayres, A.J., PhD (2005). Sensory Integration and the Child: Understanding Hidden Sensory Challenges. Los Angeles: Western Psychological Services.


Kranowitz, C.S. (2005). The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, revised. New York: Perigee.


Miller, L.J., PhD, with Fuller, D.A. (2006). Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD). New York: Putnam.


Smith, K. A., PhD, & Gouze, K. R., PhD (2004). The Sensory-Sensitive Child: Practical Solutions for Out-of-Bounds Behavior. New York: Harper Collins.

Also, sometimes wearing a weighted vest and ankle weights can help these kids. I am a special education teacher and while I have not personally had such a student, I have done some reading about this.

Donna said...

Also, this link: http://www.sensorysmarts.com/diet.html was recommended by a teacher friend who has experience with this disorder. She believes it is NOT a permanent disorder and that your child can be trained/matured out of it over time. I hope that is true.

Amy said...

{{{{{HUGS}}}}} to you my friend. What a stressful and difficult time you must be going through right now, Alli. Thank you so much for sharing with all of us. I've been there before, but for something different. There is a website I went to often in the early days called LD Online. Don't know if you've found it already. I typed in SPD and they do have a few things that might help you....here are a few books they recommended....

Attention, Memory, and Executive Function
By: G. Reid Lyon (Editor)

Like Sound Through Water: A Mother's Journey Through Auditory Processing Disorder
By: Karen J. Foli, Edward M. Hallowell, MD

Parenting a Child With Sensory Processing Disorder: A Family Guide to Understanding & Supporting Your Sensory-sensitive Child
By: Christopher R. Auer, Susan L. Blumberg
New Harbinger Publications
(2006)

Teaching Students With Language and Communication Disabilities
By: S. Jay Kuder

The Child With Special Needs: Encouraging Intellectual and Emotional Growth
By: Stanley I. Greenspan, MD, Serena Wieder , Robin Simons

The Out-Of-Sync Child: Recognizing and Coping With Sensory Integration Dysfunction
By: Carol Stock Kranowitz, Larry B. Silver, M.D.

When the Brain Can't Hear: Unraveling the Mystery of Auditory Processing Disorder
By: Teri James Bellis


The website for LD (Learning Disabilities) Online is:
http://www.ldonline.org/

I hope you can find some hope and encouragment from this site like I did. Also, do lots of research on getting him protection via an IEP or 504.

I'll say my prayers for you. Keep in mind you're a terrific mother and remember, you are his voice, you have to do whatever you can to make sure he can be as successful as all the other kids regardless of the diagnosis. There IS hope and you can be STRONG through all of this. The diagnosis doesn't change who is is on the inside. He's still the same, bright, loving, sensitive, exceptional son he was before the diagnosis.

Regarding hubby's....they process things differently than we mom's do. It often takes a while for them to get on board with this sort of stuff. Let him get to the acceptance level on his own, at his own rate. Sounds like you already realize this.

Alli, God put this boy into your lives for a reason....He knew you'd be able to care for him and love him and be his advocate on this earth better than any other Mom on the face of the planet. What an honor, uh?

Tough going, absolutely, but God never said everything in our lives would be easy, did he? Never lose hope in your son and what he can accomplish regardless of the circumstances. There is hope in every situation.

Hugs,
Amy

Julie Masse said...

Oh Alli, Amy said it all very well my friend! God gave him the very best parents to deal with this! I will pray that your whole family will have the grace to deal with this challenge and God will give you peace and understanding!

Jen said...

Ali

My son was diagnosed with the same thing when he was 3, he is 10 now, and it really is possible for the children to grow out of it. Josh still has a few of the issues, but mostly it is the loud noises that get him the most. Josh spent several years going to Occupational Therapy and it is amazing what those people can do for your child. There are some really good books listed, to look through so I suggest you go through those. Please if you need someone to talk to since I have gone through everything that you will be going through. Good luck

Janet said...

We are just dealing with all this in the diagnosis stages. I am trying the Fengold Diet from the 70's. We have just started, so I can't tell you how successful it is, but its healthier anyways in the long run, so we thought if it helped any, we would give it a try. There is much info out there on how our diets can have an adverse affect. Thank you for sharing your story.

Silvergirl said...

Hi sweetie~

My thoughts and prayers are with you, your family, and your son. I wish I could help you... wish I lived closer to give hugs and support.

Talk as much as you need to about it all... we're here to listen.

lise

Julesiana said...

Alli,
I am sure other people can give you more support. But I just wanted to add myself to the crowd. I have a son that is undergoing diagnosis for ADHD and ODD. It is so hard when folks (mostly other adults) see only the disorder and not the wonderful child within. But there is also peace in diagnosis--mainly because it gives a plan.

I am sure you have felt that God has a wonderful plan for your son's life--it just takes more patience and perseverance to find the path for children like this.

((((Hugs))) for you, ds and your family.
~Juliana

Tammy Jo said...

Hi, Alli

I too can relate to what you are dealing with. DS #1 just went thru testing with the resulting diagnosis of ADHD, OCD, Tourette Syndrome, and general anxiety. He has many of the same behaviors as a child with SPD as well, and I believe it will not be long before DS #2 is tested for SPD (smells, loud sounds, food, touching, wind, other toddlers). I know how hard it is as a mom trying to get the world around you to understand you are not a bad mom and your child is not "out of control." Getting family "on board" can be so difficult too.

Please, please feel free to chat (akroo@windstream.net or "Tammy Jo" on SCS). Also, on SCS there is a FABULOUS support group-- Support for Parents of Autistic Children. I know SPD is not autism, but the mom's on that site have childrent who run the gamut and they always welcome anyone. So many of the experiences are similar. Definitely check out that group! They have given me amazing encouragement.

God bless you and your little man.

Tammy Jo

Cathy said...

Sorry to hear what you and your family have been going through. Last week on Montel show there was a doctor that wrote a book on autism. I can't remember his name. Sorry! He talked about different foods and different ingredients that is in foods and medicine that tiggers certain things that effects their behaviors. I hope this helps. You and your family will be in my thoughts and prayers.

Carolyn King said...

Hi Alli!
big hugs to you girl--it is a lot to deal with and you are such a good mommy!!!
I do not have any personal expereince on this subject (besides the fact that I was diagnosed as Attention Deficit/Hyperactivity Disorder when i was younger. I took medication for awhile and my mom decided she liked my personality better without it.

Sometimes with age, these difficulities become easier to manage and even control.

Big hugs as you find out all you need to best help your son!

Stamp4hobby said...

My dear friend Sharon has a son who has SPD. She thought that this book really helped her out tremendously-
When the Brain Can't Hear: Unraveling the Mystery of Auditory Processing Disorder
It was written by Teri James Bellis.
If I remember correctly, Teri was in a car accident. While studying SPD, her assistant told her that she had some traits of the disorder after the accident. She has written the book based on her own experiences as a doctor and her own personal experiences.
Hope you are doing well. You'll be in my prayers. :)

Rose Ann said...

I did not know about this disorder until I read your post. You are the best Mommy to educate yourself as you have. I wish you the very best, Ali! Hugs and prayers!!

L. said...

Goodness. Everyone has a story. Yours is squeezing my heart. I can't imagine the world through his 5 or six senses! I am praying for you. I bet some miraculous talent will come out of his condition - something you would never cultivate if it weren't for that particular struggle. So look for that thing on the hard days.

Thanks for sharing with all of us. Hope we can repay the favor!

Hugs!

Laurie said...

Oh Alli!! I know we don't know each other that well...I still wish that I lived closer and could help you out!! That's a huge, huge thing you are dealing with! Although I don't have any experience with this particular disorder, we have had more than our share of disorders. Just from reading your post I can tell that your son ABSOLUTELY has the best possible help...YOU!!! I will be praying for you, your son, and your family!! It's truly amazing what God can bring forth out of such hard and difficult times! Lots and lots of hugs,
Laurie

Runamok--Melissa said...

Just wanted to add my best wishes and prayers for you. That is such a diffuicult thing--take care of yourself as well as your son. It is okay to need a break! I don't have children with this disorder, but I have known several with autism. Some parents had success with diet and with magnetics (look up Nikken--there are also several studies somewhere on this). I hope all goes well for you and your family, your story went straight to my heart--keep faith!

Etha said...

I'm so sorry to hear that Alli! Hope you keep your spirits up through all this. As you know I'm a big follower of trying to avoid the poisons that the industry tries to have us eat. More and more children become over-sensitive to these, why would their bodies accept rocket fuel and fertilizer (twinkies..) in their foods?
Here is a link that I found that could give some information:
http://www.autismndi.com/news/display.asp?content=Resources&shownews=20040721150209
To make it real easy: avoid ALL processed food, in general, if it comes in a package from the supermarket, it WILL have poisons in it that our bodies don't need. Many things can already be remedied with avoidance of sugar and white flour, obviously, don't replace white sugar with sweeteners unless you use Stevia. Honey is great :)
There has been a lot of talk about childhood immunizations and ill effects on sensitive kids, but the two sides on that have not come to any good conclusion in my opinion.

Andrea Hays said...

Thanks for sharing your story with us! It has to be hard to share something so person with mostly strangers. My SIL is an OT and works at a private clinic with children who have these exact problems. It's a tedious process, but she thinks she can make more of a difference in these kids' lives at the place she works than in a school setting. A key element for her is that she has parent involvement. It's one thing to teach kids how to deal with these issues. It's another to teach the parents. So you are on the right track with this. Stay involved every step of the way! Good luck and we are all hear to listen and be a shoulder when you need it. :)

Bethany Paull said...

Sweetie, I'm sorry that I don't have any info or words of wisdom. I just wanted to express my support and thank you for the education.

Amanda McIlhatton said...

I've been thinking about you since you shared on CHF and I can fully understand your coming to terms with his condition now having a "name". Ben is now 6 and has been promised a course of OT in the next few months and a classroom assistant for 2hrs each day to help his focus in class.
We met a wonderful clinician, Amanda McMaster http://www.citni.com/2.html who although based in N.I attends U.S.A courses and seminars on a regular basis, meeting key child therapists and could possibly recommend someone in your area.
Like you I have read LOTS but I believe that one-to-one attention and practical repetition of tasks has been most helpful to us. Of course you will all have your own learning curve as it involves the entire family working with the same methods.

My thoughts are with you and remember if you need an ear to listen......

Anonymous said...

Hi Alli,

I see you have got a lot of comments back from people and Yes I do have a child with the same exact thing and more. I am giving you my email address and telephone number to call so you can just vent. This is first and fore most that you need support from people that can relate. I don't want to leave my number on your website but if you email me i will answer you I am a teacher as well for kindergarten. My daughter who is the cutest Little girl you've ever seen has many issues and these things can take a big toll on your family. I have many tips for you, and some great things for your son as well. Definately read "The Out of Sync Child" it is truly helpful.
by the way my cousin reads your blogs all the time and called me to say please help this mom. So here I am offering my help. I live on Cape Cod Massachusetts. We have a lot of programs and things for kids like ours to do. let me just ask a few questions what calms him the most?? Does he enjoy swinging?? Can he tolerate head phones? sunglasses? how old is he? The best way this was ever described to me was that everyone has a little traffic cop in their brain to tell them how to feeel what to taste what smells are and so on children like ours are missing that traffic cop so all of their sensors are on over load and all mixed up. Tell me thats not hard to live with. One good example is when i used to cook broccoli in the house my daughter would come into the kitchen and say what that smell? and proceed to puke everywhere. I can tell you things do get better and they will but it is a road you all must travel to get him to where he need sto be. Have lots of hope. My daughter is now 12 but looks like she's about 7 she's 4'2" and weighs 58lbs and is blonde with blue eyes and can make your heart melt. One of her calming things is she likes her feet tickled, who would have thought that OMG you can't even touch my feeet I would go insane. So the key is to find his stressors and to find out what is calming and life will get better. here's my email address tltloveskids@comcast.net My name is Tammy and I would be glad to give you any info I can. Good luck and keep us posted on how your doing!!
your New Friend ,
Tammy

Brenda said...

Alli,
THANK YOU FOR SHARING! I was just praying today for someone to help me b/c we've been dealing with a lot of the issues that you listed in your post. I've been so discouraged and not knowing what to do. We have been treating our son, who is a 6yo, through natural medicine and that seems to have helped some, but he still has the most erratic behavior and we even took him out of school to home school him and that's not working very well at all. We're just about at wits end as to what to do. I would love to talk one on one about this and maybe through that, we can encourage and lift each other up. I too feel so alone and I know people look at me like "what are you going to do with YOUR son?". My husband and I believe that he will grow to be a wonderful young man one day, but right now we're clinging to a hope and a prayer. Thanks again for sharing - you are uplifting to me to know, not that you're suffering, but that there is hope out there. Bless you.

Lauren (mytime) said...

Big CYBER HUGS!! My daughter has a different diagnosis-Down Syndrome, but I do understand how you are feeling. If you ever need support or just to chat about feelings-cause believe me there will be a wide range and its ALL normal, dont hesitiate to contact me OK!

I'm happy you have an answer though as to what is going on with him. Now you can focus on helping him be the best person he can :D

You may also understand his view of things more and that may help you all.

Just want you to know there are other people who care, and "someday" this pain will go away and he will just be your son again. You wont just think about this additional label that comes with a diagnoisis.

You are a great mom! Hang tight "D
Soon stamping will be your RELEASE.

Hugs
Lauren