Just short of a year

I was thinking today about where we are now compared to a year ago. On Wednesday, her OT told me we would be switching to every other week appointments so that we could prepare for discharge.  It's hard to believe we have made it this far. A year ago, I couldn't even watch my child around other kids without crying.  Even though it's still hard sometimes,  I find it is getting easier. Most days, I don't feel like shutting my family away and sheltering them from the ignorance of the world. Most days, I am able to get up and fight again. I'm no longer angry at Heavenly Father. I feel like we are seeing the sun after a dreadfully long winter.
I've come to realize how beautiful our little world is. It's far from perfect,  but every little part of it is amazing.  I still get overwhelmed and I still worry about Liz's future (especially the up coming school year), but for the most part I feel like I am handling things better. When the hard days come, I try to take it one tiny step at a time. I try to make it minute to minute. And when darkness falls, and she's finally sleeping I lay down with her, and think of how truly blessed I am.
I never thought this would be a road I would travel. I never thought I would be a parent to a special needs child.  I always felt pity for people like me, and I wondered how they did it. The truth is you just do it.  There's not another option. I'm not an amazing super mom. I'm not your Susie homemaker. I'm just a woman who loves her child,  and would do anything to see her happy. It requires me to fight a little harder, breathe a little deeper, and find more beauty in the rain. In the end,  I'm just doing what any mom would do.
I suppose the month of June will be a month of reflection for me, a month to realize how far we have come.  It will be a month to just be grateful.

Social Media Vacation

My family is taking a vacation from technology for a week.  Technology (especially social media) rules our roost more than it should.  We are experiencing the hardest part of our year, summer time.  The transition to not having school is especially hard for Liz. I plan to use this week for a variety of things: getting Liz on schedule,  quality time with my family,  inviting the spirit into my home,  and working on controlling the amount of and types of media we allow in our house.

The rules are simple:
#1. No social media.
#2. No unnecessary Internet usage.
#3. Phones are only to be used for texting and calling.
#4. Only church movies will be viewed in our home.  No tv shows or sports.
#5. Music needs to be uplifting and invite the spirit.
#6. All other forms of media (books, magazines, etc.) Should be clean and gospel centered.
#7. No tablets.

Technology can be our best friend,  but it can also enslave us.  I feel like my family needs a break in order to get on the right path.  I truly believe this will make a difference in the spirit that dwells here. I also believe that this week of preparation will help me be a much better Mommy to my bug.

Recital Photos

And some recital photos before I take a week long technology vacation to clear my head.

Dance Recital

Lizzybug and Butterfly both performed in their dance recital.  They had 3 numbers,  and they were absolutely adorable.  I was one proud mommy.  I love that my bug loves to dance. It means so much to me, and I know that as she grows it will become extremely therapeutic for her. It will help her learn how to cope. I know that putting her in dance to begin with was truly an inspired decision.  It was something that I chose for her when all the other doors were closed.

I recently found this in her end of the year school work.  It really touched me that dance means so much to her.

We Did It!

Lizzybug graduated from preschool today. I am so very proud of her. She's beyond excited to start kindergarten next year. In fact, she wants to just skip summer vacation. I am so proud of everything that she achieved this year. We have seen significant imporvement in her verbal skills, scanning skills, and eating. Hopefully we will see even more improvement next year. Her teacher and para will both be at the school for her first day of Kindergarten. I am so glad that they are making the transition as easy as possible for her.

SOS Success

Our behavioral therapist sat down and looked at all the math from the 2 weeks we did the SOS Diet. I was quite surprised at the differences between week 1 and week 2. During week 1 Liz experienced a 20%  refusal rate. By week 2 that sat at 0. That means she ate least interacted with everything that we presented her with. We also saw a decrease in the amount of snacks she ate and an increase in what she ate during main meals. I expected results and I felt like saw results, but I didn't expect it to be tgis phenomenal. We will probably do another 2 week run in July right before school starts back. I'm pretty darn impressed.

How do you do it?

I have someone ask me this at least once a week, and I never know how to respond. The only answer I have is, "I just do." I don't have a choice not to. I know some days I do better than others. Some days I survive on survival mode, and I do the bare minimum. I have had to learn that that is okay. I do have a few tips for special needs parents.

#1. Take care of yourself. A happy mom is a good parent. Take time for you. Do something that you enjoy.
#2. Have a supportive spouse. As spouses you need to met each other in the middle. Give each other breaks. If you feel like your spouses isn't helping enough nicely talk with them about it. My husband is my biggest support system. I couldn't live without him.
#3. Find a support group. If you can not find one, make one! I have found a lot of support in my once a month meetings. It is so important to have someone to talk to.
#4. Take up a hobby. This somewhat relates to #1. I think it is important to have a hobby that is just about you. I enjoy running.  is my time to think and reflect on my day.
#5. Keep a stash. A stash of goodies that is. Some times the best part of my day is putting the kids to bed and spoiling myself with goodies from my stash.
#6. Good Therapy. For your child or yourself if you need it. I have found a lot of hope via Lizzybug's therapist. They have moved mountains for us.
#7. Volunteer. If you feel like you can handle the extra stress, find a way to give back to the special needs community. Just make sure this isn't something that will add to your stress. For me, I enjoy giving back to the community, and being involved in various causes.
#8. Take it easy on yourself. If you don't feel up to cooking dinner do not feel bad about swinging through the McDonald's drive thru. If you have a sink full of dishes, that's ok, too. You don't need to be perfect!
#9. Take time to enjoy your child. At times, it is easy to get caught up in the diagnosis and doctor appointments. Take the time to just sit and spend time with them. Those times are special, and they help me understand my kids.
#10. Work on your marriage. Take time to date each other. Many of our dates are spent at home after bedtime. We have enjoyed movie nights, star gazing, or just talking. You do not have to leave the house to have a nice date night.  Make sure that you and your spouse are communicating about concerns you may have.

These are some of the ways I do it (in no certain order). I have learned to be a guilt free parent, and to enjoy time to myself. I have to give a huge shout out to my husband. He has been so understanding of my needs, and has made sure that I have time for myself to do things that I enjoy. It's important to remember that you are more than a Mom. You are a person just liek your children, and you have needs just like them.

Lizzybug has a loose tooth...

And it is all we have heard about today! It's her first one, and she is extremely concerned about it. Liz tends to become obsessive over things, and she is 100% obsessive over this. I think she asked me 30 times in 5-10 minute period if it would hurt. She also wants to know when it will come out, how it will come out, and why it is coming out.
This is just one example of something she struggles with. Comprehending changes can be really dificult for her. She will often obsess over the small details. Hopefully soon we will have a tooth, and Bug who is a little less stressed!