There is nothing like a friend
At 4 years old a very sweet non-verbal little girl was in school in a class for special children. She wasa very special little girl named Amanda. She has apraxia of speech and was unable to speak to her classmates.
At 4 years old a very sweet non-verbal little girl was in school in a class for special children. She was a very special little girl named Bailey. She is deaf and has cochlear implants and had difficulty speaking to her classmates.
They had a common bond. They used signs and gestures and tried to use words. They became the best of friends.
At (I won’t post the age) Bailey’s mommy wrote a letter about this friendship.
At (again, I won’t post the age) Amanda’s mommy received a letter about this friendship.
These mommies had a common bond. They too shared a common language. They became the best of friends.
As the years have passed Amanda and Bailey’s friendship and love for each other has become stronger than ever. Each day they work so hard to use words to communicate and they use them on each other as well. As Bailey’s speech flourished and Amanda’s was still more difficult to understand, they continued to played together because it didn’t matter to them.
As the mommies watch the girls and talk about progress, the girls play. As the mommies share stories and milestones, the girls play. And as they play they love.
Their differences don’t matter, their similarities don’t matter. They are happy to be together and that is all that matters. This makes the mommies very happy as well.
As I write this Amanda is refusing to go to sleep because she is waiting for her play date with Bailey in the morning. It is such a blessing when you see two beautiful special little girls have a wonderfully typical friendship.
There is nothing in the world like a friend!!!
Amanda’s Dream
I know my daughter. I know when she is happy and when she is sad. I know when she is feeling silly and when she is feeling sick. I know when she is tired and when she is absolutely NOT. Even though she has never been able to tell me, I know her dream.
Amanda’s dream is to speak. To tell me stories about beautiful, happy things. To share her day with the family at the dinner table like her bother and sisters do.
Amanda’s dream is to sing. To be on stage and sing a song to a huge audience and have every one understand her and want to sing along.
For many years I have made it my mission to make Amanda’s dream come true. It has been exhausting at times. It has been sad at times. It has been expensive at times. I do this becasue I have never given up HOPE that Amanda will speak. Sometimes it is harder to keep that hope alive than others. Right now that HOPE is filling up my heart and pouring out.
Amanda is beginnig to speak and be understood. She is using spontaneous words and phrases that I have never heard her use before. She uses her gestures to help her be understood, but she is actually telling stories. Short and sweet but with a beginning, middle and an end.
How is this possible you may wonder. There are 3 reasons: 1) the Lord above has always smiled down upon Amanda, 2) she has a mother who is relentless in finding her the propery therapy and specialist and advocating for her in every way possible, and 3) Nancy Kaufman and the staff at the Kaufman Children’s Center have worked their magic giving Amanda a voice and teaching me how to implement the techniques.
Amanda has a dream…a dream to speak. This is a dream that is coming true every day and is beautiful to watch and especially to hear.
THE LINDSAY FOUNDATION
I wanted to take a moment and tell you all about an amazing woman. Laurie Hammond, the founder of the Lindsay Foundation. Laurie fought for her daughter, Lindsay, for many years. Trying to get therapy and services and equipment that her daughter needed to improve her quality of life. Laurie decided she did not want other families to fight and struggle as hard as she had to so she began The Lindsay Foundation in memory of her daughter.
In my search for assistance to get Amanda the therapy she needed at the Kaufman Children’s Center in West Bloomfield, MI, there were very few organizations that would offer funding directly to families. The Lindsay Foundation helps many families each month and they have helped Amanda to be able to receive her therapy this summer. Three of the six children here are being assisted in some way or another by The Lindsay Foundation.
You can help The Lindsay Foundation help more children improve their quality of life by voting in the Vivint Gives Back project. It is a simple process. Just click on the link below, like Vivint’s Facebook page and vote. You can vote everyday until August 27th. Your vote will give The Lindsay Foundation an opportunity to receive a $100,000 grant. Think of all the children they will be able to help.
Thank you for supporting this wonderfully kind hearted woman and the foundation she began in honor of her angel, Lindsay.
Kaufman Children’s Center - Home away from Home
We are nearing the end of our second week of the Kaufman Children’s Center SPEAK Program. Amanda’s progress has been wonderful and she actually loves attending her speech sessions. She never complains and wants to work hard for Nancy Kaufman and the other therapists helping to “Give Amanda a Voice”. While here she is receiving Occupational Therapy and Craniosacral Therapy as well. She is participating beautifully for all of her therapies.
Seeing Amanda so happy made me sit back and wonder why. At home she is not too thrilled to go to speech therapy. She isn’t crazy about OT either. Here at Kaufman she is comfortable, we all are. She enjoys seeing her new friends everyday as well as her therapists. She walks in the door and knows she is safe and that everyone here are going to help her.
Nancy Kaufman is genuinely concerned for each child she works with, their parents and other family members. All of the familes involved in this program are spending many hours at the center and no one seems to mind a bit. I believe we all know that this is the best place for our children to be right now. I know it is for Amanda and our family.
Many families spend their summer vacation at Disney World or going to the beach but our family vacation is being spent at our Home away from Home, The Kaufman Children’s Center in West Bloomfield, MI where one of the members of our family, Amanda, will find her voice.
Amanda and Nancy
Spinning Apple
I brought Amanda here to the SPEAK program at The Kaufman Children’s Center with high expectations. We have 3 weeks to get in some intensive therapy that has been proven to work with Amanda so why not have high expectations. We are going to be starting first grade when return home so I need to have high expectations. I never imagined that my expectations would be exceeded after only the first week.
Today, in session with Nancy Kaufman, Amanda begins to tell Nancy about the spinning apple. She tells Nancy about a ride she went on over the weekend and that she went with Ella, Bubba and best friend Josie. They all sat in the apple and made it spin until she felt funny. Of course the story went something like this.
Tummy feel funny, me, Ella, Bubba, best friend Josie, apple ride spin tummy feel funny and head go ohohohoh (while spinning her head around).
This is the first time in the history of Amanda that she has told a story to someone and it was acurate and understandable and the person hearing the story had no knowledge of the event to reference, only Amanda’s words.
Nancy was very impressed and thrilled to have such a conversation with Amanda. This will forever be in my heart as the spinning apple story. This whole Apraxia fight has been like a spinning apple ride that makes my tummy feel awful and I want to get off many times but feel like we will be strapped in forever. I now feel as though the spinning apple is finally slowing down and we will actually be getting off one day. Maybe years down the road but we will get off one day and I have Nancy Kaufman and the Kaufman Children’s Center to thank for the hope that we CAN stop spinning.
Trying To Start Blogging Again
We are still on our Apraxia journey and I am trying to begin blogging again. Hopefully our trials and successes will help others who are also on this journey. We have just completed our first week of Kaufman Children’s Center SPEAK program. This is a 3 week program for children wiht Apraxia and has been amazing. The progress I have seen in Amanda has been very emotional for me. She is using words more spontaneously and trying to use 3 word sentences. Amanda is now 6 years 9 months. She will be going into 1st grade in August so this program was definately needed. We have also begun some Craniosacral therapy while we are here and I will post more about that after our second session on Wednesday. There is so much that still needs to be done for Amanda and other children with Apraxia. My goal is to be able to offer support for parents advocating for their children with Apraxia and assist in getting the services these children need. Tara
Trying to start blogging again
Acceptance or am I just kidding myself?
While Amanda is beginning OT today for Sensory Integration Disorder I sit and think about the road we took to get here as well as the long road ahead. I must admit that I am proud of myself for pushing for the proper therapies for her but I am still unsure if I am doing enough. I feel as though I have finally accepted Amanda’s issues and that together, she and I can work hard to help her reach her full potential. I say those words and fear sets in again. I have to stop myself from looking too far into the future. Apraxia is a “one day at a time” kind of disorder. I still feel sad and confused sometimes, okay, alot of times, but I try not to dwell there. When I start feeling upset I do more research, find new ways to help her or sometimes just go give ehr a big hug and tell her how much I love her. My heart becomes light and not so burdened when she smiles at me and says “Ah Luh ooh too, Mommy”. Amanda is my special angel and only God knows her true potential. It is my mission not to fail Him or her.
A rough weekend
Amanda had a rough weekend. All she wanted to do is play and not really work on speech much. So…we do speech when she doesn’t even know it. While she was swinging we would get her to repeat sounds and words she has difficulty with. Eventually she catches on and shuts down but at least we got a little bit in. Her sister, Ella, broke her ankle this weekend so we were very distracted on Sunday but Steve and I still try very hard to get her to say words when she wants or needs things. The method we use was taught to me by Nancy Kaufman of Kaufman Childrens Center in Michigan. She taught me to teach Amanda aproximations of words for the words she has difficulty with. I state the word or phrase correctly and then tell her the aproximation, she then will repeat the approximation and I will then state the phase correctly and she gets what she wants. This method has been quite productive and quite exhausting but as long as it is working I will keep doing it for her. Let’s hope we have a great week.
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