Thursday, October 26, 2006

One Year Post Activation

Eden had an appointment this week for her 1-year post activation evaluation. Her cochlear implant was activated last year on Halloween. The speech and language evaluation showed a lot of scatter in her skills, which is to be expected, but overall her receptive language is at least where it should be, in the 12-15 month range, if not above. She is listening very well, and it has become natural for her. She also understands a lot of what she hears, can follow simple directions, and can identify many objects and familiar people by pointing or eye-gaze. She is clearly a genius:)

Eden's expressive language is not coming along as well as I had hoped and envisioned when she got her implant. This is not due to her hearing at all. Her newest audiogram shows that she is hearing all of the sounds necessary for speech development, and her hearing is essentially in the normal range. The difficulties that she is having with expressive language are due to the Cerebral Palsy. Often times, children with severe CP are not able to talk because of poor oral-motor control. They are not able to control the muscles of the face to allow them to form words. This is not Eden's problem. She has fairly good oral-motor skills. She is able to easily move food around in her mouth, swallow, and uses her lips and tongue very well. Her difficulties are all related to poor trunk control and lack of adequate breath support. I had no idea how much her low trunk tone would affect her language development.

I go through many ups and downs in any given week. In any given day really. This week I am feeling very down again thinking about the difficulties that Eden will face in learning to communicate. The speech therapist talked a lot about getting Eden started on some sort of augmentative communication system. At this age, it would be some sort of picture exchange system, moving to a computer as she gets older. This therapist thinks that Eden will learn to talk, and will be able to speak in sentences to us at home. She thinks that Eden is going to need support in talking in a group setting or when giving any sort of presentation in school or at work when she gets older. Becaue of her poor trunk support and breath control issues, she has a hard time projecting her voice and tends to be very quiet. In the future, she will likely have trouble maintaining control of her voice long enough to carry on lengthy conversations.

On my journey toward learning to accept Eden's disabilities, I keep having to continuously revise my vision of what she will be like as a child-teen-adult. In the beginning, I thought it was the end of the world that she could not hear. With the CI, it was easy to get over that. Then came the diagnosis of CP. We were told early on that it would likely be mild. I met a lot of kids with mild CP, and realized that I could handle it. No big deal. As Eden has gotten older, and we have come to the realization that the CP is more significant than we originally hoped, I have even gotten to the place where it's ok if she never walks. I have pictured her in a wheelchair, sitting up, wheeling herself, talking, laughing, just being a normal kid in a wheelchair. I can handle that. It's hard, but I can deal with it.

Still, things are ever changing. Eden is two and cannot hold her head up, or sit up. What if she can never even sit in a wheelchair? What if she need a wheelchair that reclines and that she has to be strapped into and be fully supported? Can I handle that? Who knows? Maybe I can. As long as she is happy and can think and talk. More than talk. Communicate her ideas and emotions and dreams. Be fully involved in her world. This is what is the most important to me. I can see in her eyes that she is smart. She is taking everything in. She has an amazing sense of humor and determination. She is empathetic and a good problem solver. I do not want her dreams and ideas to be stifled by what her body can or cannot do.

Eden wants to do everything. Just this morning she was yelling at her sister to get off the bike because she wanted a turn. She was crying and pulling Holland right off the bike, then looking at me to pick her up and help her ride. She wants to run around with the other kids, she wants to wrestle and chase the dog and play the piano and jump on the couch and build towers and push the shopping cart. She knows that she needs help to do these things, and she demands help when she needs it. I do not want the light that I see in her eyes to go out.

Language is everything. It is the foundation for learning to read and write, and even think. Already Eden's brain is beyond "what's that" and "up, up, up" but those are the things she can say. There will be a point, if she doesn't learn to talk and express herself, that her learning will be stifled. I cannot let that happen. So, I guess I will start learning the picture exchange communication system, and will start learning our options as far as assistive technology goes. It is so hard for me to let go of the idea that she will be a normal little girl in a wheelchair. And I'm not ready to let go of it entirely. We'll do the pictures and we'll do the computer, but I'm holding out hope that she will talk just fine. But even "hoping" has become hard...

23 comments:

Mindy said...

Billie, I hope this will give you some hope.

My sister in law is pretty much profoundly CP,minus the hearing loss. at 22 years of age she is still in a reclining wheelchair with a headrest support. She drools alot and her speech is unclear and halting.

This girl is AMAZING. She lectures at schools. She is writing a book about her life. she is dreaming about getting married. She is brilliant, brilliant, brilliant. She is a laugh a minute and a great conversationalist - with her unclear, stuttering, halting speech. she has terrible fine motor skills - her fingers are almsot deformed. But she pushes herself around in a motorized wheelchair using ONE FINGER. She has never learned to read, but loves being read to and listening to books on tape etc.

I must add that my sister in law lives in a group home. My mother in law did not feel capable of taking care of her, so at age 6 she entered foster care and at age 10 she joined a home for girls with developmental disabilities. When I got married she was 12. She was very shy at first, we could barely keep up a converstion. Now, 10 years later, while we dont talk often, we are close. She can talk onthe phone with a headset. She knows all the world politics and local politics and family news. She is a delight to be with. She has given motivational speeches at many schools and has attended the equivalent of a higher education program where she lives. she was mainstreamed in school although she didnt really learn much and never took any tests.

Your daughter has a bright future ahead. It's a longn struggle - but she can do it. Even if she is twelve years old by the time she can speak clearly, she'll do much better than you think. The keyword is patience, and never give up. I'm rooting for you.

Mindy

sarah said...

Billie:
I know you struggle each time you hear a new diagnosis of Eden's future, and I can't imagine how hard it must be. There is no question, that little girl has more challenges thatn any of us could ever know.

However, I continue to be amazed by her strength, perserverance, adaptability and fortitude. I know she is who she is because of you, John and Holland.

I have been following your story since shortly after my boys were born, and I never have known courage in the face of adversity such as yours, and your little girls'.

Don't give up hope, because I think Eden will continue to amaze us all!

Anonymous said...

Mamma B, keep the faith! Hope and hope and hope for Eden. She's such a happy smilie little girl, I'm sure that she will overcome any and all obstacles placed in her way. As long as you have hope for her, there will be hope for her! Learn what you have to, to teach her to learn! I'll hope for you both that one day you will post a sound clip to the blog of Eden speaking in sentences.

Anonymous said...

I wish I knew all the right words to take away the frustration of what seems like one insurmountable challenge after another. As a mother of a child with an expressive language delay (due to autism), I can only say that your feeling that "if she doesn't learn to talk and express herself, that she will stop learning" is probably a myth. My son's expressive verbal skills are limited but he has never stopped learning. In fact, he was recently tested (at 8 years old) and we found out that he is highly gifted (IQ >130). Then, the bombshell came... the OT told us that his fine motor skills are causing him such frustration that it's time he start using a computer for completing classroom work. I felt similar feelings of frustration and sadness as I mourned the loss of the ideal image I had of my child.

Keep hoping – Eden will likely surprise you in the ways she learns to express herself despite the hurdles in front of her.

Teri said...

I am the mother of boy/girl twins that are 12, my daughter has Down syndrome along with expressive language problems. We were at a bible camp this summer and one of the sessions was run by a 23 year old college student. She had severe cerebral palsey, was in a wheelchair, and was non-verbal. She used a head-stick to point to buttons on a computer that had voice output, so she "spoke". She lives in an apartment with an aide to help her. Her college has a special program for students with disabilities. She has non-disabled friends, and likes to "party" and have fun. Her classes are modified for her, but not simplified for her. She has blossomed since being out of high school and living away from home-both things her mother never dreamed would happen!! My daughter's twin brother has helped her by motivating her just to keep up with him. And she has helped him to develop a kind heart for those that are disabled. I could not imagine this when they were the age of your girls. Keep your dreams for them, some will come true!!

Anonymous said...

I've been following your blog for several months after I found it on my co-worker's blog (Lessa & Ivy's mom). I'm a speech pathologist, and have worked in early intervention for years, as well as at the elementary level. Children always surprise us, as parents and as teachers. I believe it is in their nature to do that!! I have worked with several children using the picture exchange system, with varying results (usually dependent on the family's use!!). The truly important thing for Eden is to be able to express HERself. People will learn to listen to her words/pictures/gestures, and she sounds just feisty enough to get her point across!! My favorite quote is "not being able to speak is not the same as not having anything to say" (a bit wordy, but you get the point!) I'm sure Eden already communicates in many, many ways. Using an alternative system will just allow for a broader group of people to "hear" her message!!

HHH said...

Billie, You inspire me to be a better mom. You have SO much strength! Heath and Hallie are going to be 2 in January and Heath knows about 3 words and Hallie about 15. I think he gets frustrated sometimes and throws tantrums because he cant communicate with us. It is a battle. Eden has come so far and a year ago you werent sure if she would ever hear, and now look at her. It will come with time, wheather she talks with her mouth, with pictures, with a computer. She will communicate! She is very lucky to have such a caring mom.

Anonymous said...

When my micropreemie was evaluated for speech, I was told that she would never speak in her life, or that 5x weekly sessions may have her "eventually get her point across". This was the best agency in LA and not a scam. I was devestated.

Anyway, I did 2x a week (because its $160 a time out of pocket!) and they were wrong wrong wrong. She now is advanced for her actual age (a little under 2).

My point is that you never truly know. No-one does. Its just best guesses and prognostications are just that. Ever had that with a kid you evaled? I have. This is nuts, but when she gets older, consider getting her into Kundalini. Its breath yoga (and they could totally modify). It might help strengthen her speech. -E

Anonymous said...

Billie, I am so glad the people above me have posted their stories of hope. I hope that gives you some spark of hope. Sending you lots and lots of love xxxxxxxxx

Anonymous said...

I read your blog often but hardly ever post. I don't have any experience with this type of situation but I hope the other posts will give you helpful advice. Don't give up hope...she has come so far and I really believe she is going to do wonders...how can she not with a mom (& dad) like you on her side.

Anonymous said...

Eden has amazing communication skills! She lets you know she's glad to see you with the most beautiful "hhiiii" when she see you. She tells you when she wants to go somewhere she can't get on her own.."up" and then pointing and reaching until you get her where she wants to be. On Wednesday she was "talking" on my cell phone, blabbing a whole 10 minute conversation to whoever she called (I don't THINK it was on :-)) Everything may be more work for Eden but she definitly has the strength and determination to pull it off!

Laura said...

We have a student at our universiy with severe CP. She had to use a computer to talk but she has a 3.6 GPA and knows her subject material very well. Eden will have to use her intelligence to succeed.

Anonymous said...

I have a friend at school who has CP, and didn't talk much or sit on her own or hold her head up until she was about three. she now sits in a wheelchair, can talk fine, and can sit up on her own. but she cannot walk without a walker, nor stand.

eden seems less affected actually then my friend. so eden will be able to walk and talk and all that. it will just take time and physical therapy.

Bekah (my friend) has spastic quadriplegia. that looks like what eden has.

don't worry. over time, eden WILL be a normal girl in a wheelchair.

Kim said...

I think Billie said it best when you said "you inspire me to be a better mom." I second that. You are a wonderful mother who goes to any and all lengths for her beautiful girls. You refuse to stop dreaming of their futures, even if those dreams are in constant states of revision. Your love and admiration for your girls comes through in every post. They are blessed to have you... and you, them.

Anonymous said...

Wow, Eden has done so well with the cochlear implant! How wonderful.
I am sorry you are so concerned about her expressive language. I remain very hopeful for Eden, and believe that she will amaze you in another year or two. I will continue to pray for her, and for Holland and all of you together.
Best wishes,
Sheila "tripleblessings"

Kristin said...

Hi Billie,
Here's some more hope for you. I work with a gentleman with CP. He is 37 yrs old, walks with a pronounced gait, has speech issues and his hands are often a hinder to him.. however.. He drives, his lives on his own, he comes to work every day with a smile on his face and has a genuine zest for life. He gives lectures about CP, about how it affects his life (the stories he tells about trying to zipper his fly will make you giggle) and how he has overcome every challenge presented to him.

I read your words, and I am inspired. I only aspire to be half the mom you are. These girls are blessed to have you and John and each challenge you are presented with, with respect to their abilities, you meet head on. A mother's love is boundless and you will find how you can be accepting of everything... I promise.

Kim said...

Bobbie said it best... I blame it on twin-mom brain ;)

Miranda said...

The only thing I can say is that gorgeous Edie will never loose that light as long as you encourage her to be active in her world.

Keep supporting your girls to make their own choices and to be as independant as possible, and whatever obstacles there may be, you can know they will over come them, even if they need some help, because that's how you taught them to live life... to the fullest. :)

Many hugs for your beautiful girls, and some for you too, you need TLC just as much as they do!

Mauzy said...

I know, I think all of us parents of children with special needs have the "wonder if" going on. Do you know about signingtime and Rachel, Leah and Lucy? The song "Shine" reminds me of your Eden and you......hugs

http://www.signingtime.com/ourstory/

Mete said...

So much deja vu... It just reminds me again that this is so much more your (or my) journey than it is our children's. Day to day, they do what they have to, what they want to. They aren't thinking about the future. It is up to us to try to alter our visions with each new challenge.

But this statement really says it all:

I have pictured her in a wheelchair, sitting up, wheeling herself, talking, laughing, just being a normal kid in a wheelchair.

I am sure you remember a time not so long ago that there was no such thing as "just being a normal kid in a wheelchair". Where that thought tore your heart out, that your daughter would not be able to do something you took for granted before. But now, you have accepted that idea as a success for her.

I'm sure whatever road her communication needs take, you will adjust a bit as well. It will never stop hurting, but you will learn to be okay with it. She will force you to be okay with it with that fighting spirit she has in her. Believe me. She will continue to amaze you - and all of us as well.

Kellars Mommy said...

I have posted before, but last night I started from the start and could not quit reading, you had me laughing one post and crying with you the next, so many of your thoughts I have thought myself about Kellar...You are an amazing woman, and your girls are blessed to have someone like you on their side...

Anonymous said...

schalom!

Anonymous said...

schalom!