Sensory Processing Disorder

Jen & I decided to do a little two part post about our children's struggles with Sensory Processing Disorder to go along with Octobers Sensory Processing Disorder Awareness month. In this post we will each talk a little about our sensory kiddos & some things that helped!

Visit the SPD Foundation for some great resources. 

Emma came into this world unregulated. From the time she was born, she fussed and cried, didn’t like loud noises, crowds, the car seat … and the list goes on and on. Now there were significant medical struggles, but I had never seen a baby so “rubbed the wrong way” by everything. I used to say that if she had it her way she would have stayed in the womb forever! As time went on and we got somewhat of a handle on the medical issues (at about 18 months) I started to put 2 and 2 together and realized there was something more there. Early Intervention started doing OT in our home for feeding therapy, this OT quickly realized we were going to get nowhere with food issues until the sensory stuff was dealt with. That was the first time I heard the term, being the mommy that I made a mental note and later hit Google. I was shocked at the amount of information there was on “Sensory issues”. A few weeks later we had an “official” diagnosis of Sensory Processing Disorder and started more intensive Occupational therapy. That all seems like a lifetime ago! We are currently on a  hiatus from OT, have done swimming lessons (which works wonders for Em) and I have tools that help with some regulation. Here is Emma’s Sensory profile: Emma is a “sensory seeker” when it comes to vestibular & proprioceptive input. That girl N.E.V.E.R stops! She is like a piggy tailed version of the Tasmanian devil!  She is also an oral sensory seeker, which totally explains how I ended up the human pacifier while nursing. Emma is a sensory avoider when it comes to touch (especially if she is not expecting it), sounds (the mall is torture), smells, and clothes (socks, tags, to tight, itchy, etc). I have tools to help - chewy’s, weighted blanket, we opt for a lot of cotton clothing, swing, ear plugs and A LOT of physical activity. Emma does dance class and swimming lessons and we have kind of adapted to this not so conventional norm. Even with these tools, some mornings are downright painful. All of her clothing feels “weird” or “itchy”, it sounds like a torture chamber in my bathroom when I am combing her hair and getting her in the buckle in the car seat feels more like a game of Twister. We have days she is much more easy going and days that everything and everyone bothers her. Days that she can sit nicely and color or watch a show and days that she is literally jumping off the stair landing onto the couch over and over! I have learned to adapt over the last few years, it still isn't easy but having some answers does help. I know what tools usually work for Emma and I can pull out my “Sensory Aresenal” and get her something to help. SPD is not our only issue, but it is one of the big ones. I have learned when other things are “off” the sensory issues seems to get worse (sick, hurt, anxious) and that I need to step up my game & plan for the worst. I encourage anyone with a child with sensory issues to do at least some OT so you know your child's sensory profile, what could help, triggers etc. Keep your child active and put together your own “Sensory Arsenal”. On the topic of special needs items, lets just say OUCH! I am always shocked at the cost of some of this stuff. There are a few things that I pay for because it is worth it, there are some thing that I tweak and find alternatives. Chewies are one thing I just pay for, I did try alternatives and they just were not the same for her! Fun & Function is a great website for special needs tools, they have pretty much anything you could think of and their prices are actually much more affordable then anywhere else I have looked. I also love that you earn points when you order than you can put towards future purchases. Now, if your curious, here is some of the things we keep in our arsenal.. 

Chewy...  we have it at ALL TIMES!  She uses it when she is stressed, tired, or needing oral input.

Bubbles are great to facilitate deep breathing.

Weighted lap pad. With us always & great for car rides.

Play dough. I don't take this out & about with us but it is great for some sensory input at home

Moldable ear plugs, I half them and they fit perfect in her ears. 

Stress balls - Emma calls these her "mad ball" great when angry or for some input out & about

I use this for both of us... it is a great calming oil by doTERRA. I keep it in a roller bottle and Em will put it on herself in the car or somewhere she is feeling anxious or out of sorts.

I hope that provides a little insight and help to some of you. SPD continues to be a roller coaster and something we have to plan for and work around daily! 
Lindsay 

Hi - It's Jen.  My story is a bit similar, but Hudson did not come into the world un-regulated.  Hudson was sweet and calm and loved to be swaddled.  In hindsight, that was the only way he slept without me.  He did not nurse too long, but when he turned about 18 months we started having loads of problems with clothing.  Hudson would scream for 5 minutes per item of clothing.  Each sock was a chore and when it was winter - forget about it! He also was hugely sensitive to food textures and hot and cold. He would not eat without gagging and would often throw up because he overstuffed his mouth and could not move the food back.  This was a huge source of anxiety for me because my other son was a great eater and Hudson wasn't not growing.  We started getting OT in house and then through a clinic. I learned about Hudson's sensory profile too.  

Hudson is also a sensory seeker and loved proprioceptive input, the more physical the better - tickling, flipping, swinging and wrestling are his favorites.  I discovered that I never had screaming fits about clothing when it was bedtime.  This baffled me for a while, until I remembered our routine.  He always had a bath, or a shower at night.  He was getting loads of input on his skin!  So, we do lots of physical stuff and lots of skin compressions to get him calm and regulated.  I also know that everyday - even today, when I put his shoes on he is going to scream that they are too tight!  But I am trying to let him scream about it for ten minutes.  If he can wear it that long usually, it subsides.  So, we get dressed early. Sometimes we even shower in the morning when it's going to be a cold day. I will often just pick him up and carry him to the car so his feet don't have to be so squished in his shoes.  By the time the drive is over he is ready to go. When he's anxious we use a quiet corner and he uses a weighted lap pad.  We use gum in the car and he is all about distraction of iPhones and iPads.  It seems a bit weird at first and believe me I have gotten my share of looks and criticism about walking into a store, putting my 4 year old kid in his stroller and handing him headphones and my iPad - but it is what he needs and what we need to do to get through the day and get things done.  I too have my arsenal.  Even though I have all of these tools, somedays it just doesn't work.  Now I also know that Hudson cannot decipher the sensory input that is coming into his little body and it's o.k. to leave the store or errand to another day.  

I know Hudson will always have sensory issues.  Luckily, in many areas they are improving.  His food preferences are still narrow, but improving.  OT helped us a lot, as did, swimming and horseback riding.  We want to know what works for you?
Jen

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Helicopter Parenting

A few words about the term "helicopter parent."  Wiki defines helicopter parenting as... a colloquial term for a parent who pays extremely close attention to their child's or children's experiences and problems, particularly at educational institutions.  I always considered it a positive to be "involved" with my kids, now it's so negative.  My parents were much more concerned with parties in the 60's and 70's - I wanted to do things differently, now that's not o.k.  The thing is...I would like to not be as involved, not hovering, not reminding, but after a year of my older son being bullied in Kindergarten - yes, Kindergarten!  I decided to pay more attention.  So, on the first day of school when my kid begins to wrestle with some other kids, I stood there, trying not to panic, and I watched these little boys, one in particular, get more and more aggressive and I watched my son say to them - STOP, but no one is listening.  I stood there and then I couldn't take it any longer.  I went over and told this little boy, again that he said "to get off." "I heard him clearly, now get OFF!"  The kid just looked at me horrified. I think he is still terrified of me.  Is this what they mean?  Am I a helicopter parent?

Am I a helicopter parent? My kid is loosing sleep at night about making friends and is crying at night because he thinks he's bossy and all of the two friends he's made want to play soccer and my kid is scared to death to play sports because he basically becomes a target?  Which is heartbreaking if you have been there.  I kept it very simple, but that's because there are no words.  I shudder to think of what his social situation might be if I don't intervene now.  Lord, help me in Junior High. So, I asked the teacher if she had noticed this and what she plans to do about it? She asked me if I had had some play dates?  I have.  In fact, I have had several.  So, I waited some more and went into see the school counselor.  I asked if she would be holding a social skills group this year? She told me that they usually do this for Kindergarten age kids.  I insisted there was a need.  I just want him to have other options at school.  Maybe the library?  Maybe the hall monitor?  Lunch helper? Teacher helper?  Chess Club? Something that gives him a positive roll and fosters some other activity.  I am awaiting her response after talking to the teacher.  Uugh.  I hate the term - Helicopter Mom.  I want what all Mom's want - there kid to be happy and healthy, surrounded by a group of people who see what great traits he has.  Is that so bad?  Jen

Cutting the Strings

My son is 12 and just started JR. High! I can't tell you how many nights I have laid awake and worried what will happen to my sweet child.  So I pulled back and thought, prayed and studied this thought and here is what I have come up with. Cut the Strings now! What? How can I cut the strings he needs me I do just about everything for him.... Then my husband sweetly reminded me that this is what we have been working so hard for. We have been taking him to counseling, therapy, tutoring, working with diet, regulating meds, Karate etc. So he will be able to have all the tools to stand on his own two feet when it is time. Now is the time to cut the strings let go and let him sink or or swim! If he fails in 7th grade it might hurt but then he might try harder. So I decided to cut the strings. 

The night before his first day of school he has panic attack that he will do something wrong and that I will come and rescue him and that all the kids will think he is a mama's boy. I tell him that no matter what I won't come to school unless he is about to die! Then we come up with a Plan B if things don't go right.  We both go to bed and don't sleep. I send him off the next day and he came home alive and happy! We survived the first day. The next day goes well but then he informs me that he doesn't know which bus to take and that he just gets on one and he luckily had gotten home each time! How is this ever going to work? 

Now we are half way through the first term and my son is getting all A's and B's. He has forgotten a few assignments but I am now letting my son take care of it. We look on the school assignment tracker everyday when he gets home. When something is missing he works on it until it is done.  He is not allowed to play with friends or video games until everything is done. If he is not sure what the assignment is because his mind was else where and he honestly didn't hear it. He sends an email to the teacher and asks what he needs to do. 

I am now teaching him how to do it on his own and not depend on me to do everything. We have been able to talk about facing fears and talking to adults. We went to parent teachers conference yesterday. It was a great opportunity for him to explain to the teachers why he isn't always listening. They worked together to figure out how to better work in class. I assured all the teachers that as his parent I will be around to set rules and standards to support them with getting his work done. I also let them know that we are working on letting him stand on his own two feet. His teachers where amazing. I could tell that they were truly impressed with my son and respect him for working so hard at trying to strengthen and cope with his weaknesses.

I recognize that we still have a long road ahead and that my son will always have weaknesses to over come. I still worry about what the future will bring and how he will do with life, love, work and family when he is an adult. Letting go a little has helped me to worry a little less and have more hope for the future. 

Cutting the strings and letting go is one of the hardest lessons that I have had to learn on this journey with my special son. I have loved him more than anyone else! I have been his advocate all these years! Their is nothing that I wouldn't do for my son. The important thing to remember is the reason I am doing all of this is so that he can learn to go out into the world on his own and succeed and have joy and happiness in  his life. True happiness comes from living up to our full potential and believing in our self. I am so grateful to be his mother and feel so much joy in his success. 

Utah Easy to Love Fundraiser

We did it! We planned, organized & pulled off  our first fundraiser and it was amazing!  We want to send a HUGE thank you to the community & local businesses for all the donations of food, items and time sent our way. We were amazed with the positive & giving responses we received. A big thank you to Nick & Melanie our amazing chefs who worked so hard to make both Friday & Saturday nights absolutly amazing. We would also like to thank our family and friends for their continued to support, and a huge and grateful thank you to those who attended the dinner, sent donations and well wishes. Also, a big thank you to those who volunteered their time to serve, wash dishes and clean up.


Nicholas Fahs- Chef
Melanie Dunbar - Chef
John Dearmin
Ali Barnes
Stephanie Boyer
Jennifer Pia
Becca Lucas
Melinda Hill 
Mark & Nancy Anselmi
Michael & Susy Freed
Cucina
 
Wasatch Meats

Beehive Cheese

Uinta Brewery 


Harmon's Grocery (City Creek & Station Park)

Scentsy

Eiffel Towers Fine Catering (Glasses) 

Place setting, menu & thank you 

Auction Table 

Cheese Course  

The Chefs

Jennifer - Co-Founder & President
Lindsay - Co-Founder & Vice President 

Jennifer, Lindsay &
Chrissy Young - Davis County Coordinator & Secretary 

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Here is the Information for the Spa Fundraiser... 

Macaroni Kid and The Rejuvenation Center in Layton is Hosting 
Mac Mom Pamper Night 

October 11, 2012 

6-8 Pm 
The Rejuvenation Center 
101 North Fort Lane #101A , Layton
Cost $15 Includes:
-Massage
-Body Sculpting
-Eyebrow Waxing 
-Glitter Toes 
-Hair Up Do
-Velata Fodue Chocolate 
-Yummy treats and more!
All services are being donated so don't forget to bring a little extra money for tips.