Give Amelia A Lift

Our Goal
...It’s our hope and desire to help the Allen Family purchase a van with a wheelchair lift. As Ameila grows up, it has become more of a challenge to lift her in and out of a vehicle. A new wheelchair lift will make going places much easier for the Allens and for all the volunteers who help with Amelia.

How You Can Help
There are three ways you can particpate:
1. Sign up for the “Give Amelia a Lift - Golf Tournament”
2. Join us for the Wine and Cheese Event
3. Make a Financial Donation

Golf Tournament
When : Saturday, October 9th at 10:00 a.m.
Where: Woodland Hills Golf Course - Near Eagle, NE
Details: 4 person Scramble • $100 per person
($55.00 for the green fees are not tax deductible)
RSVP to Andrew at andrew@weekslawpractice.com
or call 402.310.6269. Please make checks payable to Redeemer Church with Amelia/Golf in the memo line. - 745 ‘D’ Street, Lincoln, NE 68502.
Sign-Up: The last day to sign up is Thursday, Sept. 30.

Wine and Cheese Event
When : Saturday, October 9th at 7:00 p.m.
Where: Rob and Carla Nixon’s Home - 3045 Van Dorn St. Lincoln, NE
The purpose of the Wine and Cheese Event is to raise money for the van, to learn more about families with disabilities, and how we can encourage and support them. There will be an opportunity to make a financial contribution at the event.

Financial Donations:
Please make all checks out to Redeemer Church with Amelia in the memo line. Checks can be mailed to Redeemer Church at 745 ‘D’ Street, Lincoln, NE 68502. Our goal is to raise $25,000 to cover the cost of the van and wheelchair lift.

You can also watch this short video made by David Houfek

http://www.youtube.com/watch?v=MtEFFp_ZUCE

A Tribute to Terri and Her Dad

Couldn't quite get Miles to cooperate with the sign

You may know Terri or you may not. Let me tell you, if you have met her you will not forget her. She is boistrous, funny, generous, and has a heart of gold. She came into our lives just over two years ago soon after we moved to Lincoln. We knew her and her family from church but didn't really know them well, and were surprised when she answered our plea for help with Amelia. Terri has become a source of laughter, joy and hope in our family. Amelia and Miles love her (and Gene and the kids..and the dogs..and the extended family).

Terri has consistently spent time with us on Wednesdays. She takes Amelia to therapy or watches Miles so I can take Amelia to therapy in peace. She does the dishes and folds laundry, plays with the kids so I can go shopping and takes Amelia swimming in the hot tub at her house. She is amazing.

Recently Terri, her dad Bumpo, and Steve installed a ramp for Amelia at our house. They worked in the heat for two days as a labor of love for our sweet girl. What an amazing act. We love you both.

Our beautiful and so helpful ramp!

Miles likes to use it as a ramp for his bike!

If you know Terri tell her how amazing she is. If you don't know her, thank God with us for her love and generosity.

Friends

Amelia chilaxin' in a hammock.
I will be buying one of these for our house ASAP. She LOVED it!

Miles also loved it.

Friendship is something that I often take for granted. Steve and I have AMAZING friends who love and support us (when I say "friends" I also mean family). Friendship is however something that has caused us much grief over the last six months. I should clarify, it is the lack of meaningful friendships for Amelia that has caused the grief. Let me explain...

If you have a child or know someone that is difficult or different or in someway has a hard time making or maintaining friendships you will understand our pain. We all want to have a friend, someone to be there for us. To laugh with, to cry with, to be goofy around. The fact is we NEED friends too.

There are A LOT of things that people have to overcome or be comfortable with when being a friend to Amelia. People have a hard time knowing how to communicate with Amelia and how she communicates back. Her wheel chair is intimidating. The stiffness of her arms and legs, the fact that she only moves her head and eyes well, the fact that she drools, she has seizures, she doesn't talk....really the list could go on but you get the idea. All of these things are a potential roadblock to friendships and meaningful interaction. What I see when I look at Amelia is not all the differences above but, someone made in the image of God. Someone dearly loved by Him and someone with great value and dignity. I just want others to see the same thing and get excited about it like I do.

Steve and I have been mad and sad for a while. We prayed and sought the LORD in our grief. Finally we are talking about it, with Amelia's therapists, our friends, their kids, our pastor and really anybody who will listen. What we found instead of the loneliness and isolation that we felt and feared was open arms and people who are willing to do the hard work of getting to know Amelia. It energizes me and gives me hope. I am even able to write something on this blog:)

The pictures above are from today as we played with friends. Sadly I don't have any pictures of it (only two moms with six kids didn't leave much time or ability for pictures) but Amani and Ellie were awesome with Amelia. They took turns playing charades. They asked Amelia what she wanted to be (she answered very obviously..she wanted to be a train and a princess among other things) then helped her act it out. Amelia was so happy she smiled the whole time, didn't want to leave and smiled the whole way home. It was a HUGE blessing to my heart. The girls learned that Amelia CAN communicate, that she has an opinion and that she likes to have fun like they do.

Are we ready for the hard work this will entail? Probably not, but God always give us the strength to preserve, thrive and find real joy in the pain and difficulty that having a child with special needs brings. I welcome you on the journey with us and welcome ANY questions.

Spring

Here are some pictures of our spring thus far. We have had a great time exploring and just spending time outside.

Some of the items we found in our back yard during a nature walk.

Amelia loved getting her hands dirty.

Beautiful girl with my beautiful Lilacs that finally bloomed this year.

Miles loves to help with the garden. So far he has only dug up one cucumber plant. He's not so much helping in this picture but I had to put one in of the cute cloth diaper butt.

Amelia enjoying the sights, sounds and smells of spring.

Preschool

Amelia started preschool at Clinton Elementary. It is a big old school on the north side of Lincoln. Our home school does not have an Early Childhood Special Education (ECSE) classroom so we were placed at Clinton (the only opening in the morning). Thankfully we all love it. The teacher is wonderful, the paras are great and the therapists are too. Amelia's team consists of a special ed teacher, 2 para-educators, 1 speech therapist, 1 occupational therapist, 1 physical therapist, 1 technology specialist and 1 nurse. Quite a team! Everyone is taking a few weeks to get to know Amelia but things are going great so far.


Every day Amelia comes home so happy and ready to "tell" us about her day. Her favorite part so far is singing. She has helped pick out the song the last few days. She likes Wheels on the Bus best, what can I say, we have been singing that song for a long time. I remember not knowing what to do with Amelia when we first got out of the hospital. All of the usual kid stuff was gone I couldn't see past the meds, tube feeding and doctors apts. Jo Russel Brown from the Delta Gamma Center in St. Louis helped me to see that I could do some "normal" things with Amelia, like singing songs. Amelia has a connection with others through singing and music.

We take Amelia to school in the morning and she rides the bus home. The HUGE yellow bus backed down our street for the first time last week. I was so scared for Amelia (and me) about the bus ride, but she did great.

Miles and I are enjoying some mornings away from therapy too, we were able to go to Mom 2 Mom today and enjoyed some time with friends. We couldn't be happier with our new routine.

Speech

I wanted to share some of the things that Amelia is doing in therapy. I will attempt highlight each of the three main therapies Amelia participates in (speech, physical therapy and occupational therapy). Let's start with SPEECH:

In speech, Amelia's therapist Carrie has been working diligently for the last year+ to develop a communication strategy. We all know that there is a lot going on in Amelia's head, the problem is accessing it. Things are limited because she has minimal movement in her body and she vocalizes very little. We started with using switches to play and learn cause and effect in St. Louis. We have tried different locations (hands and head) for Amelia to access the switches and have found that she is accurate with both! It is sort of an art though, due to her limited movement the switches have to be placed "just so" in order for her to be able to push them. We are working on ways to make it easier for anybody to set up the switches for her (this will be really important when she starts pre-school).


In this video Amelia is using the switch to activate the music box. The DynaVox sits in front of her (upper left of screen). The switch near her head (her left side) is what she uses to make choices with the DynaVox.

It is amazing how God has worked to bring the right people into our lives...Carrie shared with me last week that many Speech Therapists (SLP) don't get education in assistive technology (AT) in school like she did. She was fortunate to have a professor who is a leader in the field in AT. Other therapists have to get continuing education when they are out of school or just never learn about it. Carrie has worked very hard to give us the ability to hear Amelia's voice and her experience in AT has been invaluable. Several months ago Carrie started introducing Amelia to a DynaVox and Amelia has caught on and is showing a lot of progress with it. For now we only practice with the DynaVox at therapy (which we goto 2 times a week). However, we finally got all the paperwork in and are waiting for approval from insurance. The DynaVox is a touch screen computer that Amelia accesses with a switch. We started with one page that contained several options of toys that Amelia enjoys. On the screen is pictures of severla toys. One by one each is magnified and at the same time the computer says the name of the toy. Even though Amelia looks at the screen we think she mainly uses the auditory part to decide which toy she wants. When the toy that she wants to paly with comes up she hits her switch and the computer says "I want to play with the...." and we play with it. Amelia has graduated to two pages now, one with toys and one with several other messages like "Amelia" that says "HI, my name is Amelia" when she picks it. Another has my voice and Steves voice recorded so she can pick to hear us say hello. There is also an "all done" which she picks frequently when she is tired. We are very excited at the opportunity that this amazing device gives us all. In in we can scan pictures, have classmates record messages and so much more.

While we are waiting for our own DynaVox we are using a step-by-step at home. We use it to allow Amelia to say "hello" to visitors and to tell us "I love you". The latest thing we have started doing is putting it by her head when she is in bed so she can tell us if she needs us at nap time or in the middle of the night. She has caught on quickly and it is a HUGE relief to us knowing that Amelia can communicate with us when she needs to.

Amelia playing with her "Blues Clues" toy (right hand) and making choices with the DynaVox using the red switch at her head. You can hear the DynaVox's computerish voice talking. When we have our own we can have different more natural voices recorded and upload our own pictures.

Another aspect of Amelia's speech is how she talks with her eyes. One way she does it is we ask Amelia questions and when the answer is yes she looks at us and when it is no she looks away, she even says "i don't know" by looking in the middle. She also looks at two objects and makes choices. She picks out her clothing in this way. Amelia's physical therapist Chrissy can get her to answer probably 90% of the time. We get her to answer 50-60% of the time. As we get more consistent with asking and listening (which is a key component) she is trusting us more and answering more. She does show her stubborn three year old self frequently by protesting and not communicating or participating.

I hope this post helps to explain some of Amelia's progress. If you have any questions as always either post a comment or e-mail me a question. It is a lot of information and is difficult to explain in words so I am not sure I did a very thorough job.

Hope you are all well and enjoyed the Thanksgiving holiday. I know we did.

Jen

Three Years Old

Monday was Amelia's third birthday. I have said it before but birthdays are a bitter-sweet thing for us. We are so amazed and in love with Amelia. She has been through and accomplished so much in her short life, she is my hero. Yet, is difficult not to think of what we lost in June 2007, all those hopes and dreams for our first born. We still have hope and we still dream, things are just different now...not the typical.

We celebrated with several smallish parties...Thursday in Valentine with my famliy. Friday in Ord with my family (yes, I have a lot of family). Sunday at church with our church family. Monday with a sweet friend, her grandparents and two amazing therapists at Madonna during therapy. Miles and I sang "Happy Birthday" about a million times and Amelia got lots of e-mails and phone calls too. Thanks to you all.

Party time in Valentine

Party time in Ord