The agency Elise has been receiving HI (habilitative intervention) services through called Thursday morning and said they were shutting down their business as of that day. There was no warning sign of it at all so I was completely caught off guard.
What this means for us is that the two developmental therapists who have been coming to our home five days a week for the past 9 months will no longer be working with Elise. I didn't realize how attached my family and I have gotten to both of these fabulous ladies until the tears came. This may not seem like a big deal, but we have formed such a tight bond with them.
One of the neat things about having a special needs child is the opportunity to associate with so many wonderful people. These therapists were just a couple of those who have touched our lives and have greatly made an impact on Elise's.
At snack time we'd meet up at the table and talk while working with Elise. We'd bounce ideas off each other, laugh when Elise would start giggling out of nowhere, and cheer like crazy when she threw food in her bowl rather than the floor. They were great listeners and I loved having them in our home. I am grateful for their persistence with Elise and for believing in her. Most importantly, I'm grateful to them for being mine and Elise's friend.
Elise's 1st day of developmental preschool was today. She is now getting 30hrs/wk of therapy.
Since the beginning of summer she has had therapy at our home every day and it has made a big difference. Before people would ask if she's making much progress and I would try to think of ANYTHING new she had done. I had a hard time answering that question.
Now I feel like she's learning more and more things all the time. I know it's because of her daily therapy and many prayers and fasting on her behalf.
I truly want what's best for her. I often ask myself, "Is early intensive therapy the best or staying at home with us?"
Our short-term and long-term goals for her are to have the best quality of life she can have. Yes being with family is great but I have learned it's not fully the right answer.
I have seen her light up learning how to activate a toy by herself and feeling proud.
I have seen her learn to motor plan climbing up a ladder then going down a slide by herself and feeling proud.
These things she's learning in therapy are helping improve her quality of life. She is happier and more content. I know she feels a sense of satisfaction. As much as I wish more than anything that I could spend the entire day with her one on one working with her, I know I can't. There are others in our family who deserve and need me as well.
I am grateful that half the time she does get to be home during therapy. And I am grateful for all the help and resources out there. It's a blessing. It's a lifesaver. With every progress she makes it's like watching a miracle take place.
This is Elise.
We named our Elise after her. She volunteered at the beginning of the summer to watch our kids twice a week for the whole summer for FREE! She is an amazing, selfless young lady with a super bubbly personality! I just love her :) Our kids have grown to love her as well.
Awhile ago I remember lying in bed, feeling sorry for my Elise. We had named her after this sweet and amazing girl and I felt bad that our Elise wouldn't get the chance to experience as many things as her. I somehow felt cheated.
Just then I had the most amazing experience. The veil felt so thin and I got a glimpse of who our Elise was. It was something I'll never forget. I was taught that night that Elise isn't here to be taught about the world but instead would teach the world.
While I was so insistent on teaching her earthly things, I realized she was here to teach me heavenly things. It's so easy to feel defeated and like I'm not doing enough. I want more than anything to help her and for her to live the best life she can have. I get so focused on teaching her this and that, that at the end of the day I've realized she has taught me something more, something much better.
Elise is definitely a special name.
Our family has been blessed with a very unique opportunity of having a special spirit in our home. Our kids have a very unique opportunity of being able to serve someone they love every day. This is a blessing indeed and I am so grateful they get to learn these lessons of selfless service and love. We are Elise's hands and get to do those things for her that she cannot do herself.
Part of Elise's therapy is family training. We just began this with the kids today. Bryn and Brock will be taking turns each day for 30 minutes learning how to play with Elise and learn her limits. My heart leaped with excitement as I watched the therapist train Bryn how to play with Elise today. Often they play beside her and once in a while they are able to have some sort of interaction but it was so sweet watching Bryn open all the pop-up toys and Elise pushing them down. This type of "play" went on for 20 minutes.
When they were done, Bryn told me excitedly, "Elise looked at me after she pushed down all the toys!" I got the feeling that she yearns for a relationship with her sister. We all do. I am excited for this unique and special opportunity we get to have!
I love the look of absolute peace on Elise's face. I wish she could always feel such peace.
I know it is not possible nor required for everyone to understand what we go through with Elise but having others understand just a little helps.
My sister watched Elise and one night texted me saying how Elise had a rough night and how difficult it was to listen to her cry and be inconsolable. She then said how it makes her want to cry for her.
After I got this text I knew exactly how my sister felt. Ez and I find parenting Elise difficult. Both of us want to fulfill our parenting roles with her but at times it isn't easy. Ez wants to fix any of Elise's struggles and disabilities. Being a mom I want to nurture and make everything "better." With any other kid who cries, when you hold them you can console them and make it all right. Elise doesn't get that same comfort. I want to and try to hold her but she is fighting something inside that sometimes I can't make better. So yes I knew what my sister was saying.
She said, "She's the most endearing child I've ever been around. :) I really am grateful for this opportunity to get to know her, to have her light up our lives, and to love her. That's something you can't get from just a visit."
What she said means so much to me! So many others love her as well and say things similar to this and I can't help but not be grateful that she's mine. We are blessed and grateful to have such a supportive and loving extended family on both sides!
A big box showed up on our porch and inside were these beautiful flowers and vase from Ez's co-worker and his family. I'm grateful for their thoughtfulness as well as so many others during this time.
The acts of service vary from gifts, to a listening ear, to having someone to hug and cry to. My friends have been so sweet. So many of them ask how they can help and I have a hard time answering that question when I don't even know what I need. Without asking they brought us meals, cried with me, took me to lunch, and listened. One friend suggested making shirts for our girls with special needs for our upcoming race. It was such a wonderful idea and I can't wait to run in it!
Lots of other people say they are praying for us. They say they feel bad because that's all they can do. What they don't know is that it really does help and I'm grateful for their thoughtfulness. After the first few days, all of a sudden I snapped out of it and I feel stronger now than before. I have felt the strength from everyone's prayers. It is real.
Starting next week all her behavioral therapy will be home-based! I am super excited to have one less place to drive to. It was a tender mercy how it came about and I know it's what she needs most and what we need.
One day I had a sudden impression that she cannot handle being "out" at another place and needed to be home. I quickly acted on the prompting and later received a phone call from the supervisor. She told me Elise would be getting therapy Friday mornings now instead of Wednesday afternoons. This surprised me because Fridays have been my preferred day but they have been full so I haven't been able to do that day. I was humbled to have it all fall into place so perfectly and know,
"God is in the details of our lives." -Pres. Thomas S. Monson
This room is why I feel our new home is such a tender mercy for us! There is no way we could have done this in our other home. It is a blessing for sure.
Elise and her therapist are able to hang out in here during therapy. The rest of the time it's her little piece of heaven. She loves it. The other kids love it as well. It's one of the only places where all of them can play together. I don't want Elise excluded from things so what greater thing than to bring it INTO our home and create the environment for her and so others are drawn to her. It's been great and I couldn't be happier.
I've thought a lot about what I would write on this post.
How do you sum up a year like 2013? We had our 4th baby, moved, Ez was called as Bishop of our church, Ez was in the doctorate program and graduated, and Elise was diagnosed with autism. Words like joy, relief, stress, love, overwhelmed, grief, sadness, and more stress stand out.
The one word that stands out the most though is:
Gratitude for my loving Heavenly Father who is so kind and good to us.
Gratitude for the Atonement! Because of it there is hope and hope is the anchor that keeps me grounded. Because of it there is an indescribable comfort that our Savior gives because He has been there.
Gratitude for the resurrection. Elder Holland's closing words in Oct 2013 conference sum up my feelings. "I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last.”
Gratitude for trials. It's a long, hard process to get to the point of being grateful for trials. Months ago I couldn't say this. I've learned so much that I can't help but not feel grateful. God's tender mercies and blessings are all around. He is there and so mindful of us.
So many people ask me how I do it.
How I live being a Bishop's wife, with 4 kids-one being disabled? Lots of time I ask myself the same question. I think for the most part I've been just trying to survive the year but I know God's grace is real.
This blog has been the biggest blessing and I know it's mostly been for me. It has helped me "see" with clearer eyes the good around me. It has helped me reflect on my blessings. I have been taught by the Spirit during the quiet hours at night as I reflect on the day.
There is a balm of Gilead. I know that amid any circumstance we can find gratitude. By writing I have been blessed to feel this overwhelming feeling of gratitude.
I am grateful for my blog :)
This quote was from this most recent conference and I love it! It caused me to experience a paradigm shift.
The definition of stellar is: indicating the most important performer or role. That one word changes everything. Elise's spirit is one of the most important. She is the "prima ballerina" as the dictionary explains. It is not necessarily her that needs us but us that needs her.
How grateful I am for her and being a gift to our family.
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!