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.
At speech yesterday, the therapist and I talked a lot about where Elise is at and what areas she isn't progressing in. We decided to eliminate "more" and "all done" from her ipad. We've been working on her understanding those words for months now and she isn't making any improvement so for the time being we are cutting them from her program.
The behavioral therapist and I talked for an hour this morning more about the ipad. We have done so much trial and error with it, trying to figure out what will work for Elise. We are simplifying it and adding mostly those things that are highly motivating for her in hopes she will want to utilize the ipad more.
Thankfully during the 4 hours the therapist is here they use the ipad the whole time. Elise is on a visual prompt with her pointing goal. This means in the last 7 months she has learned how to point and point at a picture on the screen of what she wants.
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.
We have now entered the therapy building over 104 times. Today marked our one-year anniversary of beginning OT services.
It's crazy how fast it has gone yet it seems like I've been there my whole life. I think my kids will end up saying they HAVE been there their whole lives!
Elise comes here for OT and speech therapy. I love her therapists and am happy with the things they are doing with her.
Elise's 1-year OT evaluation was today. Developmentally she is at the age of 11 months. This didn't surprise me. I've watched Cal enough to know he's ahead of her and I'm okay with it. The therapist and I discussed new goals and we will be working a little more on Activities of Daily Living (removing clothes and eating with utensils).
At age 3 1/2, Elise can:
A very proud little girl. And she outta be!
In therapy one of Elise's new goals is to replace her throwing food with putting the non-preffered food into the bowl. Throwing food has been a big problem and it is getting worse. If she's eating pancakes and gets to a point that she's either done or doesn't want them anymore, she begins throwing the pancakes, with syrup, all over the kitchen floor. It makes for a big, sticky mess.
The therapist gave Elise a preferred food, (smarties, marshmallows) then a non-preffered food, (rye). I sit behind Elise and redirect her throwing into the bowl while the therapist sits in front of Elise and gives her the food. These are bite sized pieces so it goes pretty quick. When Elise puts the non-preffered food into the bowl, we reward her with a smartie.
Elise put the non-preffered food into the bowl BY HERSELF 17 times today! No prompts with my hand even. I am still blown away at how quickly she caught on to it. The therapist and I were cheering and clapping like crazy and Elise was smiling so proudly for us.
Way to go Elise!
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!
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
Today is Elise's last day of gymnastics since she is turning 3 this week. It was a class just for kids under 3 with sensory processing disorders and disabilities. It has been so wonderful for her.
She started beginning of May and couldn't sit still during circle time. A lot of the things were very difficult for her. Bars were especially difficult and she wouldn't even touch them. Now she can walk on the beam very quickly holding my hand, she gets into the ball and foam pit and loves it, and can sit in circle time.
As excited as I am for what awaits Elise when she turns 3, I am also a little sad. It is the end to a few things that I have grown to love and care for. I have made so many friendships with the women in this class. We have a special bond and understand each other on a different level. We have all told our story of why we are there and what is going on with our child. One mom almost died delivering her 26 week old daughter and her daughter still has on-going complications. Another is divorced, recently discovered a brain tumor, and has kids in therapy. The stories go on and on.
Elise has maybe had 4 sessions the whole time where she hasn't had a meltdown. These women cheer her on though. When she's happy and doing what she is supposed to do, they say over and over, "Yay Elise, good job!" I've never once gotten a judgmental stare or comment.
Everyone there only cheers.
It has been a real eye-opening experience to me. This group would have frightened me a year ago; kids that aren't neurotypical ("different") or who struggle developmentally. The unknown of something is always a little intimidating but I've learned deep down that all these kids need is love and a sense of belonging. That basic and fundamental need that all of us need is no different with these kids even though it may not be reciprocated back as we expect. I'm going to miss this place and these people!
Elise's therapist did some testing today to see her progress. I became more and more disheartened as the questions continued. No she still wasn't following commands, no she still wasn't pointing to pictures; on and on it continued.
By the end of the session I was done.
Luckily Ez was home sick so I could cry to him. I was so disappointed and frustrated that after HOURS and HOURS and HOURS of therapy, those were the answers I gave.
Thankfully Ez knew just what I needed to hear. He told me, "Look at where she would be without it."
Those words pierced my heart. I knew they were true. I knew that even though Elise has made little progress, it is progress nonetheless. I know that this life she has, is and will be slow and a lot of hard work-for both of us. But I know without therapy she nor I wouldn't have the hope it gives us and hope keeps me going.
Using an app on the ipad, Elise is able to "talk" to us. We're just beginning with this but I am so excited to be able to bridge the gap in communication until she can verbally talk to us. I am feeling very grateful for technology!
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!