Surviving Summer

I have a love/hate relationship with summer.  I love the idea of the pool, Popsicles & playing with friends. Summer has taken on a little bit different meaning over the last couple years. How do we keep the learning momentum going? What programs should we do? Two years ago I loaded everything on. Swimming, horseback riding, Occupational therapy & physical therapy. I also felt the need to feel the in between time with enriching and engaging activities. By the end of summer I was WIPED and so was Emma. It was too much to keep up with. Last summer in an act of what could only be compared to teenage rebellion, we were lumps. Seriously. No schedule. No therapy.  Very few "enriching" activities. It was mostly the pool in the front yard. It was boring and L..O..N..G. The lack of schedule created chaos for Emma. Her anxiety was OFF THE CHARTS high.
What I learned - BALANCE.  I need to work on it. It doesn't have to be 24/7 super mom and tons of activities. There can be structure and schedules without being overloaded. That's my goal on this fast approaching summer. I am constantly talking myself out of adding another activity to the schedule. We will keep bedtimes (other than a few extenuating circumstances) close to the same time, make sure she is getting her 3 meals a day and packed snack/drinks to keep off the "hangry" behaviors that creep up if Emma is even a little bit hungry. There will be a mix of structured activities and down time. Balance. We will be doing Occupational Therapy & Horseback riding (which her dad will be taking her to on their visit). We are debating swimming lessons. As much as we love Miss Betsy it is a long drive, a lot of time & a lot of money. We are holding off on girl scouts and making sure that we have one scheduled at home day.

Organization. This is key for keeping me & Emma in a good place. I have a binder with calendars, menus, fun activity ideas, coupons for various community going ons & envelopes for cash to fund these activities. This is what keeps me sane. For Emma we will be re-implementing the visual schedule at home. She has one at school, but we haven't had one at home for a while, I think carrying something over that is used in school will help ease some of the stress of change.

So that's our survival plan. I am sure once it is here we will have to make some adjustments and tweak things that are and aren't working for us. I have attached a sample of our weekly schedule. This is one of the things I keep in the binder. Again, this is just a sample and there will be wiggle room, I just wanted to give an idea of our basic day. If you want a 'This Week' to print for yourself let me know: ) I can email it to you as a PDF. You can also pop on over my my 'Summer 2014' Pinterest board for organization, schedules & activity ideas. Click HERE.

Let the count down begin...

Lindsay

"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 

Utah Easy to Love Upcoming Events

Utah Easy to Love has a full and fun rest of the year! 2013 has been flying by and we are so thrilled with how things are going! We have our first family event under out belt, a parent retreat, our first ever workshop & a huge fundraiser. On top of that, we were also able to set up free special needs film screenings with The Utah Film Center! There is more to come and we wanted to share!

October topic is focusing on the effects on siblings and families. Raising a child with special needs is tough and exhausting. It also can take a toll on everyone involved. We will be talking about this stress, have helpful handouts and information and most importantly the support of others who understand. Also that month is a FREE family event at Kangaroo Zoo! We are so excited to be able to offer a fun night out at no cost to you. There are limited spaces, so please RSVP as soon as you can.

October 9th - Salt Lake City
7:00PM
October 16th - Davis County
7:15PM
**If you need to use child care, please reserve your spot. Limited spaces avaialbel. $5/child.

October 19th - Free special needs film screening
Shriners Hospital
11:00am

October 23rd - Family Event
Kangaroo Zoo
6-8PM
**PLEASE RSVP ASAP

November will be focusing on the upcoming holiday season! Always stressful and over stimulating. We will have ideas and support to make the best of it!

November 13th - Salt Lake City
7:00PM

November 16th - Free special needs friendly film screening
Shriners Hospital
11:00am

November 20th - Davis County
7:15PM

In December, we will be holding our 2nd annual 'Special Needs Favorite Things' Holiday Party. Last year was an amazing success and we are thrilled to be able to host another! Watch our facebook and blog for additional details!

It is crazy that there is a little over 3 months until 2014! We have so much planned for the rest of the year and some seriously AMAZING things planned for next!

Bobby Lawrence Karate Kick-A-Thon to benefit Utah Easy to Love

Come help support Utah Easy to Love at this amazing event! 100% of money donated will benefit Utah Easy to Love! Donations mean more groups, more workshops & more special needs friendly family events!! Come and play September 14th 9:00am-12:00pm and watch these awesome kids kick for a cause!


You can also sponsor a special kid close to us! Ashton Young has been doing karate for 7 years, he is a Ban Bu Belt and only has 2 degrees left before getting his black belt. His special needs have not held him back from working hard and reaching his goals! You can donate any amount via paypal, the link is  on the right sidebar!

 All donations are tax deductible. If you would like a receipt for donations made, please email us at utaheasy2love@gmail.com.

Visual Schedule Workshop!

We are SO excited to be able to put on this amazing event!

WHY: When your child was diagnosed or looking at diagnosis, did you get a list of books that were penned as "the must read". We sure were. I remember having 3 or 4 books at a time that I "needed" to read. Realistically most of us do not have time to not only read but then figure out how to make it work into our family and routine. This is putting those 300+ pages into a pretty compact and easy to understand package.

WHAT: We have the amazing Lori Krasney from the Children's Center presenting. She is going to talk the logistics. What is a visual schedule. Why they work for special needs kids. How to implement them into your family. After she does her presentation we will have a yummy brunch and then have all the supplies and instruction on how to put it together so you can get started right away implementing it into your life.

Boom - 3 hours for what could take 6 months to read and then put together (for me anyway :)

COST: If you register BY August 10th you can get the reduced early registration fee of $35.00. After August 10th it will be $45.00. We do have limited scholarships available, if you are interested in applying for that please email us and we will get you the information.
You can send a check or money order to
PO BOX 581215
SLC, UT 84158

We can also do credit card payments over the phone (a $2 service charge applies).

What does the cost include?
*A professional guest speaker/instructions on visual schedules
*Q&A with Lori
*Brunch
*All the supplies and instruction to put together your own schedule to take home.

If you have any questions please feel free to email or call.
utaheasy2love@gmail.com
801-532-4331

We hope to see a lot of you there!!
Lindsay

Summer Shinanigans!

Summer is a crazy time for us! Last year I eased up on our schedule and got a little loosy goosy, we totally paid the price and I plan on sticking to our normal routine this time around. Seriously, last summer was PAINFUL. This year there will be much less free time and I am hoping that will help. I am an optimistic realist, so I am planning for the worst but thinking/hoping it will be a fun summer.

Easy to Love has some great events coming up this summer too! We are SO excited that the plans we have been working on are coming to light! We are going to start doing 3-4 family activities a year, these will be tailored to meet the needs of our ETL kiddos and families. Our first family activity is June 8th at Orange Leaf in Bountiful. We will have the back party room to ourselves and the owner is offering an ETL discount. We have it listed as an open house 2-4pm, you are welcome to stay the entire time if you like! We will have a show playing, as well as some coloring pages. Please RSVP if you plan on attending!

Also this summer is our annual parent retreat! This year we are keeping it a little closer to home and got a campsite in Big Cottonwood. It is going to be a lot of fun, good food, good company and some great breakout groups.

There are some changes to our Davis Group location. Lil' Flippers Gymnastics has graciously offered their space as well as a staff to manage child care. Child care will cost $5 for 1 child/$8.00 for 2. The children will get to play in the gym with trained staff. We will be holding our meetings in the parent room which has access to cameras to monitor the children as they play. See flyer below for our summer group schedule & more info on Davis Child Care.

We hope to see  a lot of you at our summer activities & groups! If you were unable to attend this months group & you would like a copy of the Summer resource list please email us! The summer resource list is full of special needs friendly activities in our community!
We also hope to see you at our May groups. The topic is Alternative Treatments. We will be chatting about the good, bad & controversial.
SLC - May 8th
**If child care is an issue, please email us & we will see what we can work out. We are still struggling to find consistent child care, but have some volunteers on reserve if needs**

Davis - May 15th
We will be at our new Lil' Flippers Location
865 W 450 N  Kaysville
If you plan on using child care, please RSVP asap. Limited spaces available.   

Look forward to seeing you all this summer!!
-Lindsay

Trying to move forward

How can I get through one more thing? I am a whimp!

We decided to focus on getting more physically fit as a family this summer. My son was charting our progress for a merit badge. I noticed he was getting really fatigued and that he was not progressing even though we worked out every day. So when we went in for his Jr. High physical with our family doctor I mentioned it. He did some simple tests and then referred us up to Primary Children's to meet with a neurologist. We met, they did more tests and then sent us to meet with a neuromuscular specialist. This specialist has determined that my son has some major muscle issues that will take many more tests to hopefully diagnose. They are concerned that since his heart is a muscle and every muscle they have tested is affected that there could be issues with his heart as well.
This news has devastated me! I feel like I was just getting to understand how to help my son. He has ADHD, Anxiety, OCD and sensory issues. Now we have a whole new set of issues. I spent most of the month in the fetal position crying and mourning all that could be lost. I try to tell myself that it may be just find and there is nothing to worry about. Deep down I fear there is something horrible wrong. They have said that he may be in a wheel chair by the time he is 30. I feel so sad that he will have suffer with all the emotional baggage, but that he will also have physical disabilities too. As a parent there is no greater pain that I have had than watching my children suffer.
I know that I cannot live like this forever and it's not fair to my other children to let this disable me. I need to be here mentally not just physically. I started to notice my kids acting out because they needed me. So I have been going to counseling, and I do energy work. I am trying to build courage and face this head on. I feel frustrated that there is so little I can do until we know what we are dealing with.

I console myself by realizing there is a lot worse out there and I am lucky. He doesn't have cancer. He is happy and has a really good life. Here is the truth though. It is still HARD! This is my baby and I HATE that he has this trial.

I realize bad things happen to good people. If you look every family has something that is hard that they are dealing with.  I know that we will come to understand and work with the limitations and obstacles that his new issue brings in our lives. We will have peace and joy in our lives again.  I will just keep moving putting one foot in front of the other!

I am so grateful for a good support group. I know you understand the feelings that even words can't seem to express correctly. Thank You for sharing on FB, the blog, and in meetings. You have helped me so very much.

Thanks Friends
Chrissy Young

Fundraisers, Giveaways, Groups, Oh My!

What started out  as Starbucks chats about our kids and the need to find a support group to join, led Jen & I to laughing at that same Starbucks a few months later after several people told us we should "just start one" of these non existent groups...and now, here we are! We are finishing up the Non-profit paperwork process with the goal of having all the loose ends tied up by October. We are already growing and reaching more families, we have hosted a retreat to celebrate our 1 year mark, managed to do a sewing class/community service project (with another in the works!) and are now putting together a fundraiser dinner for the end of September. I really am still flabbergasted at how much we have managed to accomplish! Our Starbucks giggles are still there, but now it is giggling about the fact we did it, I think we still both have some disbelief at how far our group has come! We are so grateful to all the support we have received from the community, our families and friends, and most important the support from our group members! We started tiny, but you have stuck it out.

Fall is here! So we thought we would post some reminders and changes!
One big change is a little adjustment on our name. Due to logistical issues when getting set up as non profit, we have changed from Easy to Love, Hard to Raise, to Utah Easy to Love.

For our Salt Lake Group everything as far as scheduling and location are the same. Groups start up again September 12th.
The Sharing Place
1695 East 3300 South SLC
2nd Wednesday  the month 7-8(ish)pm

Davis County Group starts again September 19th. There are a few changes, I think we have already announced them but here's a reminder.
New Location- Learning Solutions
347 West Gordon Ave #2 Layton
Same schedule- 3rd Wednesday of the month 7-8(ish)pm
Chrissy Young will be helping out a lot with this group. Jen & I will still be making an effort to attend, this will just help us be a little more flexible.

*Changes you will see at both groups
We now have to start out the meetings reading our group guidelines, these guidelines will help us get the most out of our groups. Also, we will make sure there is a copy of our Bylaws available for anyone interested to look over. They will be set out with handouts or other information from our group. We will not provide everyone their own copy (it's many many pages) but if after you look it over you feel like you would like to have one, let us know and we can get it to you.
If you have questions about these after the group, please let us know.

Giveaways & Advertising
Many of you may have noticed that we have been working to incorporate giveaways into our group. We feel like it is a fun little bonus and are excited that we are able to do it. Most of our giveaways will be coming from donations, this means we offer advertisement space on the blog to help compensate. We feel like it is totally worth it, but want to make sure everyone is in on the recent blog changes! I know I did a blog post in the summer touching on it as well, but because it has become more of a reality since then I thought I would put it out there. On a side note, a HUGE thanks to Chrissy! She has been a rockstar and working hard reaching out to our community to get a lot of exciting things in place!
Stay tuned for more giveaways, we have some fun things in store!

Fundraising
We have been posting a lot on our upcoming fundraiser. We are super excited about this event and how much it will contribute to our group and what we are able to do! If anyone is interested, the dates are Friday September 28th and Saturday September 29th. Dinner is $45 per plate which includes a 3 course meal, including dessert and wine, prepared by two recent graduates of The Culinary Institute of America. You can contact Jen with any questions or to reserve tickets @ 801-532-1412.
We are also coordinating and putting the finishing touches on another event. I am not going to spoil the fun, but I am going to say is Pampering, Mamas night out & a crazy good deal!
Stay Tuned...
One last thing, we would love some feedback on an idea we have been throwing around. We are thinking of putting together an Easy to Love call tree. People could list their numbers, emails and what their child struggles with. We would put together a contact sheet for everyone, that way there are people to reach out to that totally get it. There are two reasons we are thinking about this, The most important is that our goal is to build a network of parents who can support each other. The second is that it has gotten a little hard to manage the calls coming in. We LOVE LOVE LOVE chatting with you, it's just getting hard to juggle it all. Let us know what you think!
We are super excited about all we have coming up! As always, if you have any questions, concerns or ideas, feel free to shoot us an email! Utaheasy2love@gmail.com