"The Orientation" Part 3

Hey All, as I was talking about in Part 1 & Part 2 of this blog series, I decided to put together a blog series basically of things I wished I would have known early on. Things to do, questions to ask and treatments to seek. We will pick up with number 3.

 

#3: Deal with sensory issues. I know this was a HUGE struggle for both Emma & Jen's little guy. Daily tasks of getting dressed resulted in reactions that sounded like the kids were being cut with glass. Going to the store was a meltdown inducing outing and the wrong food texture would result in gagging and projectile vomit. Good times.

Probably 99% of the parents that have come to our group have a child struggling with SensoryProcessing Disorder to some degree and ranging in what is affected. Emma is a "Sensory Seeker" in most ways. She never sits still, needs to chew things contantly, climbs, jumps, twirls, spins. She also has had avoiding behaviors. It used to be mostly around textures that she touched and ate & clothing issues like sock seams and jeans. Now it is mostly sound but she still struggles with the way certain clothes feel. First on our list was finding a good OT. Not all OT's are created equal and they general have areas of focus. When you call to schedule make sure that the OT they are sticking you with understands and treats Sensory Processing. They will first have you fill out a sensory profile assessment, talk to you and work with your child to get the entire picture. From their they will create a treatment plan which will include how often you are seen, what they do while you there and put together a "sensory diet" for home and school. I cannot even begin to tell you how much this changed our life. Knowing what helped Emma regulate gave me invaluable tools to help her. We put a swing in her room a couple years ago and this is still something she will use to calm down, we made a weighted lap pad to help her focus &/or calm down and always have a chewy on hand.

Seriously, I cannot say enough about OT!! I have attached links to certain terms and put the two places I can personally recommend for OT.

PrimaryChildren's Rehab is who we have used for the last 5 years for everything from feeding therapy and OT for both sensory & fine motor. They are amazing, pretty much take all insurance and are always willing to work out payment options. Their staff are the best of the best.

Easter Seals - Goodwill Northern Rocky Mountain (they are located in The Children's Center in Salt Lake City). I have not personally used them for regular OT but Jen has, as well as friends of ours. They have been very happy with their work. Insurance is a little trickier, but I do know they are working on adding more plans and offer sliding scale. I did do their "Wiggly Worm Sensory Processing Disorder Class" with Emma. It was a wonderful program for both me as a parent and Emma. It is offered a couple times a year.

Tools:

We got our swing at IKEA, it was a fraction of the price of "therapy" swings. But there are other types of swings like a Lycra huggy swing that could easily be made for a lot less.

We made a weighted lap pad - again, all about saving some money! There are directions HERE

Chewy's are our very best friend! They calm down, save her clothes and her fingernails!

**Abilitystation.com is a locally owned special needs website, they donate a percentage of sales to Utah Easy to Love**

THIS BOOK 

Other things that have been helpful - ear plugs, gum, fidgets, bubbles for deep breathing.

Sensory Processing Disorder is tough, it affects the very basic day to day things we have to do. It is also always changing. Things that bothered Emma 2 years ago have evolved and changed. There are things that don't bother her anymore and new things that have started bothering her. Getting a handle on this and knowing how to accommodate has made a huge difference in our journey.

Mark your calendars for March 12^th (Salt Lake members) & March 19^th for Davis County. Our Support group topic is “Sensory Processing Disorder” and we will have an OT presenting and answering questions. 

Early Intervention

I recently started a journal where I write a letter to each of my boys. It has been a way for me to document their struggles and mine and makes me feel like someday when they are older they might read it and understand some of my parenting struggles and learn from them. I have been reluctant to blog lately, because things are going so well. I felt as if it was wrong to flaunt our achievements with Hudson in the face of so many others who might be struggling. I was reminded of the reasons I started this group with
Lindsay. I just wanted to hear some hope. If anything, our story is a story of the importance of early intervention. We have participated in family therapy from the beginning, therapy preschool, speech, OT, Play Therapy, Social Skills, Yoga, U-FIT, Pingree Soccer Clinic, Special Ed. pre-school, Dance, and now skiing. Intervention byany means possible is vital to your special needs child’s success. This is a letter I wrote to Hudson today.

Saturday, February 2, 2013
Dear Hudson,
You are so amazing! Me and your Dad have worked so hard since you were diagnosed with Autism in October of 2010. It is now the beginning of 2013 and while you still continue to struggle with some things, you continually surprise me with your love of life, your joy, your humor and your drive. I decided early on that my job was to stretch you - not unlike Ray Charles’ mother depicted in the movie “Ray,” who made it her mission to teach her son how to take care of himself and survive in the world despite his disability. Not unlike Temple Grandin’s mother who did not cower to the restraints that Autism placed on her daughter. She took it on as her mission to celebrate her daughter’s unique vision and teach her how to interact with the world and survive despite being a
woman and a person with Autism. As parents, I believe it is our duty to recognize interests or strengths in our children and expose you to those things, so that you can truly find a passion and a direction in life that you love.
When you were first diagnosed, I cried forever about all the things that I thought you were never going to do. I thought you were never going to have “normal” play-dates with friends. That you would never dance or play sports with all of your sensory issues. I cried because I thought you would never interact with a teacher and give enough of your attention to learn and I cried because I thought you would never communicate without aggression. I cried about all the birthdays and holidays we would have to downplay because it was too much for you. Not surprisingly, crying about it does not get you very far.
As of today - February 2, 2013, I am proud to say that you have had birthday parties with friends. You now love Christmas and Santa. You have participated in a soccer clinic and sports and you love watching football. You are now in a public school regular education classroom with over 15 students. You have had 3 play-dates with a “regular” kid from your class. You are enrolled in “Hip Hop” Dance class - that you love! You talk about your feelings when you get mad. You have had 3 ski lessons despite your sensory issues and you are skiing!! That truly is a miracle. You are not a quitter.
I thank God, that I am also not a quitter. Me and your Dad know you are going to do great things, with great love and passion for life.
Love, Mom