"The Orientation" Part 4

We are on to #4 in this blog series, if you haven't read the previous here are the links.

Part 1

Part 2

Part 3

#4: Get some type of organizational system in place for paperwork. There will be all kinds of paperwork. School paperwork, evaluations, therapy notes etc. On any given week I am bombarded with papers about Emma & this was even more extreme in the beginning of our journey.  I started things out with piles of paperwork in 10 different spots & I always felt like I was digging for important things  before appointments. Finally after a "ah ha moment" (which I have referenced HERE) I decided changes needed to be made and there needed to be something in place to help me stay on top of everything.
I got a small accordion file to start, they are in the dollar spot at Target. This file is just for Emma. We have tabs for: Medical, Developmental/mental health, Occupational Therapy, Education & Receipts. In the front I have a folder with her Insurance cards, any notes/questions for upcoming appointments and a list of current medications & dosages.  I found when I started using this I felt more in control & doctors/assessors/therapist seemed to take me more seriously. I wasn't {as} frazzled and sitting trying to remember information that they were asking for - I had it with me. Emma's file goes to EVERY single appointment we attend, I also recommend keeping a small notebook with it as well. I always makes sure to jot down notes from appointments for reference.

My super cute chevron file from Target dollar spot!! It's my constant companion - from parent teacher conference to medical appointments! 

There are a lot of other organization tips/tricks I have and use to keep things running smoothly, but this was and is still my most valuable tool for our home.

If you have any questions or need ideas for organizational tricks for your home I am happy to answer emails - utaheasy2love@gmail.com. You can also visit an old blog post Jen & I did with the systems we use in our homes HERE.

We only have 2 more posts to go in our series! Stay tuned for Part 5 - Self Care!

Lindsay 

"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. 

"The Orientation" Part 2

Hey All, as I was talking about in Part 1 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 2, written by Jen!


I wanted to participate in Lindsay's orientation posts and add a few thoughts to #1 -   It was so vitally important that we find a "medical home" pediatrician for Hudson, because that led us to OT, Speech, Social Skills groups and many other services over the past few years.  I have said this before, my whole life felt like it had been turned upside down and my community was no longer my community.  I had to find my "new normal."

With that we move to #2:
 I have to put my pitch in for finding a support group.  Everyone needs community.  Some feel comfortable in a specific diagnosis community and they are out there - Autism Speaks, CHADD, Utah Down Syndrome Foundation,  In the case of Lindsay and I - our kids did not fit any one "ism," they had multiple.  We searched for a group that had a variety and did not find the right one, so we started one. However you find one or start one is up to you, but do not give up on that concept!  It has been the single most grounding and freeing experience of my life.  Within our autistic home; with it's nonsensical rules and rigidity, it is sometimes the only laugh I have had all week.  Nothing is more freeing that belly laughing about the chaos that ensued when your child did not understand the sarcasm of a friend and ran screaming epithets in a crowded restaurant (true story).

Utah Easy to Love - meets monthly in Salt Lake City and Davis County.  We hold monthly activities for families, we have this blog, a Facebook page, email, and a phone line.  Reach out!  Tell us your story.  We get it and we want to be there to support you through this time.  It does get better.  It may never be easy, but it does get better.
With love and laughter,
Jen

Stay tuned for part 3...

"The Orientation" - Part 1

Jen & I have often talked about when we first started chatting after meeting at the Children's Center. Both of our kiddos (who are only 2 days apart) had started attending the preschool there about a month prior to us first talking. At that point I was pretty checked out from things that were going on around me and completely focused on Miss Emma and her medical and emotional care. I had seen Jen there,  and for a brief moment my once super social self had thought maybe I should go say hi. I didn't. I continued sitting in the waiting room reading whatever book was recommended at the time or walking past her in the parking lot. Thankfully Jen ripped off the band aid and came over to chat, honestly I don't know that I would have with the space I was in. Chatting at the Children's Center soon turned to Starbucks runs while we waited for our kids to get out. Jen jokingly asked if there was some type of orientation and for a minute I wondered if I had in fact missed something! We have now been traveling this path for a few years now. I would never claim to be an expert because everyday is different, but we have picked up a few things along the way.

We talk a lot about the "what next". What do you do after your child receives a diagnosis, or even before when you are trying to figure out what is going on. There is no orientation packet or guide to what the "plan" is or should be. There is also only so much you can plan for. So I decided to put together a kind of orientation. It is just a guide of things I have learned on the way, that have helped or made things a little easier. I am not a professional by any means but I know that if someone had given me even a few little nuggets I would have been really really grateful for not having to learn it the hard way!
Because life is so crazy I will be breaking this up in to a few difference posts, that way its more manageable for me and for others to implement. Please leave comments or feedback and let me know if there is anything that you want more information on!

#1 - Have them formerly evaluated. I started with my pediatrician who was monitoring Emma closely. As she got a little older and things got more complicated we were referred to the Children's Center for therapy, meds and preschool. We were also sent to the Child Developmental Clinic for assessment. I was lucky with my pediatrician being the head of the "team" and making sure were were doing what we needed to. If your pediatrician is not on board or listening to your concerns it may be time to look for someone who listens to you and your concerns.
  ** If you are looking for a pediatrician it is super handy to have one that practices the Medical Home Model. Just ask them, they know if they do! Basically they are the team captain who oversees everything from mental health, specialists, school, Therapeutic services. I can't even tell you  how valuable this has been for us.

Resources:
The Children's Center (therapy services for children under 7)
Child Development Clinic
Clinic 6 University of Utah
Neurobehavior HOME clinic