Holidays, changes and time off!

Tomorrow we will celebrate the holiday season at our annual Christmas party and are so excited to see everyone attending! We filled EVERY SPOT! Wowza! It's going to be awesome. After tomorrow Utah Easy to Love will be taking the remainder of December off to spend time with our families through the Holidays. We will make an effort to answer pressing questions or concerns, but may be slow in our response.
A recap of the year...

Our art program with UMOCA was amazing! We will be meeting with Jared and their educational director to work out a schedule for 2015! Stay tuned.

We had an AMAZING turn out for our special needs Easter Scavenger hunt, and even better feedback. We cannot wait to do this again for our awesome families!

Super fun giveaways on Facebook... more to come in 2015

E2L held our 3rd Annual parent retreat in Kaysville, this will continue being an annual event but we will be making changes to the format. It will be better than ever!

We held our biggest fundraiser to date! Our first annual charity glow ball golf tournament at Swan Lakes golf course was a HUGE success!

Had a fun day indoor rock climbing with SPLORE (stay tuned for another round!)

Held an awesome clothing drive for families raising children with special needs, everyone was so awesome in helping us spread the word and get donations together. We were able to help a lot of families get ready for the winter season! Big thanks to KONA karate for their sponsorship and help pulling this together.

We lost one and gained one. Co-Founder and President Jennifer Levy moved to California the beginning of December. She will continue on the board and be involved from a far - but we will miss her. We also added Angela to the board as well as the position of volunteer coordinator/ community liaison, she has been an amazing addition to the group and has stepped up and in to her role with Utah Easy to Love - gun blazing!

Angela put together Easy to Love's first Sub 4 Santa program this holiday season. We were able to help two families and are finishing up this week! We are so grateful to those who have pitched in for these families and cannot wait to make this a yearly program.

So there you have it! It's been a busy and awesome year and 2015 is going to be even better. Watch for additional board members, a new website, awesome groups and activities and more!!

We hope you all have a warm and happy holiday season.

Love,
Lindsay Bartholomew
Jennifer Levy
Chrissy Young
Angela Mitchell

To the Mom who Said my Child Doesn't Care...

Dear Mom Who Said my Child Doesn't Care:

I can see how she can come across that way to those who don't know her, she can seem distant, distracted and aloof. I know that she needs to leave play time frequently for a "break" and that there are times she is trying to control peers. I know all of these things. I understand they make things hard and that not everyone will understand her quirks.

Here is what I also know. She is one of the most loving, open and accepting children I have ever met. She will play with the child sitting alone.  She will give the best hugs and kisses, loves to snuggle and hold hands, and the people in her world are everything to her.

 She feels everything deeply and more than most of us. The entire world of sounds, smells, feelings and more are coming at her at full force all the time. The result? Sometimes over the top reactions, needing to leave when everyone is still playing, yelling and acting out. I was open and honest with you. I told you where she struggled and how you can help make things easier. I trusted you with her well being at play dates and even attempted a slumber party. Silly me. I should have known that even though you said you understood - you didn't.
As a mommabear myself, I understand feeling like you needed to protect your child and watching her have hurt feelings was tough. I am just wondering in what world you thought that "fixing things" was coming to my house and not only unleashing your verbal spewing on me about all the things "wrong" but looking at my child and making sure she was clear your were talking about her. Emphasizing each word "there is something wrong with you" "you don't care about anyone" "You will NEVER get to play with L again". Congratulations. You just bullied a 6 year old.

Did you see her face? That child you so clearly think doesn't care? Because I did. Heartbreak. Fear. Confusion. If you would have been a fly on our wall you would have seen the tears. You would have heard her asking heartbreaking questions and crying that no one ever wants to be her friend. You would have heard her begging to go say sorry, make it right and that she will never take a "break" again.

I had to level with my 6 year old and explain to this Innocent sweet little princess that there are bullies out there and that they are not always children. I had to tell her that even though I know she loves playing with your little girl, that things would be different. I had to take a little piece of her innocents and break a little piece of her heart all because you chose ignorance that day.

 I will admit. I am still so angry and hurt for my little girl. Angry that she felt like she needed to apologize for being her. Angry that you pulled her in to something that could have been discussed reasonably between the two of us. Just ANGRY. But I am working on moving on, we are moving forward and learned a lot from this experience.

I am hoping you have too.

Sincerely,
mom across the way

Parent Teacher Communication Log

As I mentioned in the previous blog, I am a little freaked out about Kindergarten. Emma was tested before summer by the school district and we found that she is a pretty behind academically, we also have some fine motor & sensory issues that need to be addressed. We thankfully easily got an IEP set up for her so that she will have all the resources she needs to succeed. That being said, I want this to be a positive and fun experience for her and one that goes as seamlessly as possible. I have been brainstorming and pinteresting ideas to help. A lot of 'Parent Teacher Communication Logs' popped up in my search. Some were printables, binders etc. I didn't love any and they seemed like they would makes things more complicated. I remember Jen had a simple notebook for back and forth with Hudson & decided that was the way I would go. Simple. But of course, I have to make things not as simple :) I decided to make it girly & cutesy - because a little fluff never hurt anyone!

 

Supplies:
Composition Notebook (ridiculously cheap right now)

Scrapbook paper & coordinating stickers
Modge Podge
Sponge brush
Pen (I used a fine tip sharpe to write over modge podge)

 

I cut the paper to size and then modge podged it down. I decorated the way I wanted and then covered with a thin coat of Modge Podge. I also covered the front inside cover that was full of useless info (ya know.. math formulas & such) with a coordinating paper. On that inside covered I filled it with my contact info and some fun little facts about Miss Emma.

 

What I will use it for: Little notes back and forth with both her Kindergarten & resource teacher. They can send me concerns, good days, upcoming info etc. & I can do the same.

Stay tuned for more "Back to School" projects!

 

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 stay on top of it all

This post has morphed over the last couple weeks I have been working on it. It originally was suppose to be a post on organization, especially for our special needs kids. I feel that being organized is an invaluable tool to stay on top of the mountain of paperwork, appointments etc. that our kids have. As I worked on the post it became more of a personal story of the struggles over the last few years. I decided that despite things beyond my control I wanted to be happy. So here we go!

Let me start this post by saying that I am not a therapist, parent expert, happiness expert, organizing or life expert. I have found a system both in my home and for me that helps me stay on top of this crazy life both physically and emotionally. I am happy. Not every day, not all the time – but in general I am happy with the life I have created for myself and my daughter. It’s not easy and I have days that I just want to throw in the towel, but I work hard to keep myself, my home and my priorities in check. There are more times than I would like to admit that my bathroom goes a little longer than it should without being cleaned and my room looks more reminiscent of Monica’s (from Friend’s) secret closet than an actual bedroom. Don’t even get me started on the endless mountains of laundry! Bottom line, I have 20 things going on any given day. From Emma’s school, dance, appointments, illnesses and play dates, to my list of maintaining a home, schedule, work, support group, family and trying to eek out some mommy time. I constantly feel like I am going 10 directions and am trying to keep the juggling act going.  Being organized helps me feel in control and keep on top everything we have going so I & most importantly Emma don’t get overloaded. Having a place for schedules, IEP paperwork, school contact, babysitter info etc. makes life just a little easier. For me, my Home Management Binder is my life saver. It keeps everyone coordinated and all the important paperwork in one place. In one book I can go over our weekly schedule, menu, needed groceries, school stuff and budgets all in one sitting. It’s a time and sanity saver. I have always enjoyed organizing and got a little too excited over a new day planner, but things fell through the cracks in a huge way after having Emma. Here’s a little story of what it took for me to check in on myself and my life and how the glorious Home Management Binder came to be. ..

Emma was a sick and very fussy baby. She slept 4ish hours and we had constant ER visits, doctor’s visit and the eventual feeding tube. I was getting 2-3 hours a sleep a night and my marriage was all but over. I was stressed, tired, miserable and my life was in shambles around me – both figurative and literally. The house was a disaster… like embarrassed to have anyone come to the door disaster. I looked and felt a hot mess and sort of just existed. I was 110% invested in Emma’s care, but let everything about who I was go. I was not the fun, talkative and happy person I once had been. One day, I was watching a couple little girls, my brother (he was 4 at the time) and of course Em. I was feeding Emma in her highchair, I turned to take a few steps to tell the kids to stop this or that and Emma went out after me. I was literally a foot away when she landed on the floor. (Side note: no judgments needed on the seatbelt end of things… I thought since I was going to be right there it would be fine. After this – she was strapped in tight even if I was sitting there with her). Emma hit her head and I immediately called 9-1-1 in absolute hysterics … inconsolable crazy lady hysterics. By the time 4 ambulances, 3 policemen and 2 fire trucks arrived Emma was done crying and was hanging out no worse for the ware. They told us to take her to PCMC to be checked out, but thought she looked fine. I however, was far from it. I remember sitting in the ER room as they observed her. Emma’s dad was there, he had moved out but at that point it was a “take a break and see” type thing. As Emma slept in my arms I spent the time thinking about all that had happened. How was this my life? This is not even close to what I imagined it would be. I am unhappy, tired and frazzled all the time. My house is a disaster and I don’t know my behind from my elbow. Right then and there I decided to make some serious changes.  I spent the 4 hours Emma was being observed making a mental list of all the things I needed to get in order, when I went home I wrote it all down. This was my actual list; I have just added the explanations.

#1: Make a final decision on marriage. We were both miserable, wanted completely different things and fought all the time. This was not something I wanted Emma around and I felt that I deserved to be happy as well. The decision was made and paperwork was filed about a month later. I have not looked back since and am without a doubt sure I made the right decision for my family. #2:  Figure out a home management system. This is when I came up with the binder. This was pre-pinterest so I just had to wing it!  It is broken up into: schedules, menus, home, Emma, Lindsay, Family.
.#3: ORGANIZE EVERYTHING!!!! This one took me a while. I had to focus on one area of the house a week to work on. I would spend 30 minutes a day digging myself out of the nuttiness I had let happen.
#4: I need ME TIME. This was easier said than done and still is, but I have found I am better mom and person if I have just a couple hours to myself.
#5: Get out of the house & do fun things. The kids were happier, I was happier and we were making some fun memories, even across the street at the park or on a nature walk. Sometimes it is still SO MUCH WORK I just don’t want to go anywhere but I found for us this was one of the most important changes I made for our family.

I also set goals - I have a both a family and personal mission statement and set seasonal goals which are divided into “FAMILY GOALS”, “PERSONAL GOALS” & “EMMA’S GOALS”. We don’t always meet all of our seasonal goals, but we are always working towards them.

It took a scary situation to knock me out of my life funk. I have to “check in” with myself every so often when I feel myself start to get crabby or overwhelmed. It’s been 4 years since then and I am still working hard to stick with those goals I set in PCMC ER. We have had many ups and downs since then with both Emma’s health and development. Having all of her information organized and pulled together has been an invaluable tool in our journey. I can quickly thumb through her history and give medication dates or side effects, let the GI know the days she had a stomach ache etc. In the end this leads to more thorough care for Emma.

I do want to finish up by saying; I am not in any way trying to be on a soap box. I know that everyone copes with things differently and everyone does things differently. We are all working so hard to help our kids and keep on top of everything. My only hope from this blog post is to let people know that I have and continue to have struggles along the way. I work hard to try and be the best mom I can, but sometimes feel like I am losing my mind or failing as a parent. This group has been such an amazing addition to my life. I have formed wonderful relationships with people and have a space every month to share the struggles. 

Lindsay

*If you are interested in more on “the binder” J Feel free to email me. I am happy to share templates and pintables! Just email me at utaheasy2love@gmail.com

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

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

February Groups

We are super excited about our groups this month! We have Parent Consultants coming to ask questions about the IEP process.

We are asking if you will please RSVP to the group are attending, we will be bringing IEP materials for everyone and need to make sure we have enough.

You can RSVP on our Facebook events page HERE, or send us an email @ utaheasy2love@gmail.com

We also want to remind everyone that there will probably be a lot of questions, please make sure you are considerate of others attending the group and let everyone have a chance. If you have a specific question feel free to email it to us and we can forward it to the Parent Consultants before the meeting.

Busy!

Sorry it has been so long since either of us have updated the blog! The holidays were insane and both of our little ones turned 4 within a couple days of Christmas... it has sort of been a marathon!

Here is a quick overview of what we have been up too!

Christmas went well, Emma was excited to see what Santa brought (a new doll with lots of accessories!) and overall did really well throughout Christmas Eve and Day.

Emma's Birthday was the day after Christmas. e had a small family party (Rapunzel themed of course!) and she did much better than I had anticipated. She was definitely past done by that evening! She held it together though, with a lot of people, a lot of expectations and limited down time. It took Emma a few days to re-coup from all the excitement and change in routine, we were both really happy when everything got back to "normal" what ever that means! :)

above:

Christmas Eve with her favorite person mr. ethan! & Christmas morning playing

with her toys from Santa!

above:

Emma in her Tangled Birthday attire & getting ready for bed in her new Tangled Jammies and bed set that she got for her Birthday! She was IN heaven and SO excited to sleep in her own bed!

Emma started a new preschool through Davis County Schools, it was so nice to get her back into a school after graduating from the Children's Center in November. Emma thrives in school and does really well! So far I have been impressed with the teachers and Emma seems to really like them as well. Emma love playing in the Kitchen center and is learning to write her name!

Emma continues to do amazing in her dance class and loves her teacher Miss Katie!

We continue to plug along. Everyday is a learning experience, Emma has made A TON a progress and I am seeing a "big girl" start to emerge. With all of our steps forward there have been many steps back, we are working through struggles while still celebrating her amazing successes! I continue to fight for Miss Em to make sure she has every opportunity available to get the tools she needs!

I hope everyone had a wonderful holiday season and is doing well! I am SO excited about this years meetings! Can't wait to see some old faces and meet some new ones!

Lindsay

Halloween...

I love Halloween... really I love any holiday and like to make them a big deal {birthdays too!} Things have for sure had to adjust with Emma and when I still try and do the BIG DEAL stuff, often times it back fires.
Emma's first 2 Halloweens were un-eventful. She was so young that I plopped her in a costume for pictures, went to 2 houses and then we were good.

top-Em's 1st Halloween, bottom-her 2nd

Last year she was older and I thought a good age to attempt some real Halloween fun. She had the MOST adorable Halloween costume and we had several activities spaced over a few days. By Saturday night when Utah did their trick or treating Emma was spent. We traded out the "itchy" fairy costume for a soft frog costume (with a tiara she insisted on :) that was warm and fuzzy and out we went for Em's first real trick or treat experience. It was freezing, rainy and windy. Em made it through 4 houses before she had a melt down, during the melt down she slipped and fell in the mud...we were bathed and in bed 30 minutes later.

this picture pretty much sums up last years Halloween

This year Em wanted to be Rapunzel from Tangled, her very favorite movie. She is thrilled with the SOFT costume I had specifically made to be SPD friendly. We are taking it easy. We did a trunk-or-treat Friday night, after she got some treats she was in her jammies, snuggled in a warm car watching a show. She was happy to eat a couple pieces of candy and watch a Halloween Clifford. We will do some Trick-or Treating on actual Halloween but we are avoiding the "events" of the season. It is just too much for her. I will admit, sometimes it is disappointing to turn down family and friends who invite us to fun activities. It is disappointing that we can't always do our "family traditions" that have been happening since I was a child. But, I am working through that and adapting things to meet Emma's needs. We are still creating wonderful memories in the process.

Every year is a learning experience... maybe this year I will have the hang of things?!

Hope everyone has a safe and fun Halloween!

Lindsay

September is going to be exciting!

We are working hard to get the word out!! We hope to see more of you all and for our group to grow, we are going to try & be much more diligent on posting on the blog and on our facebook page. As I am sure all of you know life can get CRAZY and sometimes a week goes by in a blink of an eye. If you don't see anything for a bit and you want information on an upcoming group don't hesitate to shoot one or both of us an email!

I am SUPER excited about September's meeting. Our focus is going to be Sensory Processing Disorder. This is something I am passionate about as it is one of my daughters biggest struggles. We are excited that Katie Mangus an Occupational Therapist from Easter Seals has graciously agreed to come to BOTH meetings. We will also be bringing some information that we find helpful to share! We will also have our first meeting in SLC at The Sharing Place. It is such a homey comfortable and safe place, we are excited!
October's focus will be eating difficulties. I know both myself and Jen have struggled in very different ways with our children's eating. We are going to keep this a caregiver panel and hopefully we can share things that have worked for us and I am sure many of you will bring some great ideas as well. I have already gotten some wonderful ideas and insight!

November is focusing on the effect caring for a special needs child can have on the family. Some possibilities are in the works for this meeting. We will keep you posted as things get closer.

I am really SO excited about this group and so happy that Jen and I decided to "just start it". I look forward to a GREAT fall and hope I get to meet more of you.

As always please feel free to contact me by phone or email with questions, ideas or if you just need a little support that day.
-Lindsay
lindsaybartholomew26@gmail.com