Life has been moving at full speed in the Owens house. So many new things to report, so little time to sit down and blog them all out. Plus, I always need a photo to inspire me, and my ability to get behind any camera other than my phone often proves difficult. But today I made it happen.
Communication and mobility are the biggest and most difficult goals we have for Angela. The physical is coming along nicely. She is so motivated that I can totally see her finding mobility soon, whether that means scooting on her belly or walking in a gait trainer -- it's gonna happen, and I have a feeling it will happen very soon.
As for communication, this is a major challenge. Angela is a very smart little girl, but she has a lot going against her. The CP and her lack of both fine and gross motor skills makes it very difficult for her to aim and hit buttons -- and add in the fact that she is legally blind and it can prove to be very frustrating for both Angela and us are her parents. Angela has CVI and it is ever changing, as is typical of most kiddos with this diagnosis. Some days it seems like she can see everything and other days not so much. She uses sound as her eyes -- when she is very familiar with a sound she can see it -- her brain can better comprehend the images she is seeing. This is great in social settings, as the more she hears and recognizes a voice or sound the better she can interact visually with it. But when trying to find a good communication device for her this doesn't help much. Her brain is healing and we are praying that as she continues to develop her ability to navigate a six inch screen will also improve.
For now the iPad has been working out great, but it's still not perfect. We know of the Proloquo2go program many families use but we feel that for Angela this is just way to advanced of a program. Last month a new app was created called My First AAC. This app was specifically designed for toddlers and preschoolers. It's a great app -- but it's very simple. Not a lot of room for customization, but it works for now. Although Angela is not really purposefully hitting the iPad in the proper spot to give an appropriate response or comment, we have set up the program so that when she is in social situations all the responses programed onto the given page apply to her peers and others around her. She can say things like, hello, nice to meet you, lets play and this is my talker.
Although she is not able to aim and talk -- she still loves to be able to have words and fully recognizes the meaning of what she is saying. When she hears something like i love you, she will look up and wait for a response from us. Giving her words is huge!
In other news Angela has been attending a preschool class one day a week at our local YMCA and is totally loving it. I stay with her in the class but only play a small role. She enjoys coloring with peers, having circle time, singing songs and doing a craft. Socially she is really holding her own. She gets very tired in the short hour long class but I expect this to improve as her body gets stronger and she is better able to cognitively take in all the stimulation.
This girl is amazing. I fully know outward appearance is so insignificant, but its in her physical appearance that I can see the healing of her mind and spirit. They way she looks at us -- heck, the way she looks at the camera! Her world is making sense to her and she is no longer going inward to feel safe and secure but is daily learning to take risks and spend time in the present more and more -- and actually enjoy it!
12 comments:
Sounds like she might be a good candidate for using a switch! Of course touching the screen is always so much more motivating, but if she can't be accurate then a switch and scanning is probably the way to go. There are a few options to use a switch with the iPad, but a dedicated communication device might be more accessible (at this time)- such as from Prentke Romich Co or Dynavox. They would also have auditory prompting as an option to compensate for her vision.
Yes, I'm semi familure with these options. The issue with Angela is that she needs instant gratification which most three year old do. We have worked with switches but it's just not practical. She has lost interest by the time she can get to the thing she wants to say.
She will be having an AAC evaluation soon and I'm curious what she will do.
I'm really hoping that her vision continues to improve and her options will open up a bit. We'll see. Thanks for the tips.
I have a 12 year old daughter who is blind. We adopted her when she was 2 1/2 and she had absolutely no language, wasn't walking, and had just started pulling to a stand. What about using some tactile cues for her in addition to pictures? Raised line shapes are wonderful. Then on days where she is using her vision more she can see the picture and the tactile prompt, and explore it by touch also, and on days when she is not using her vision she still has the tactile cue that she is also used to. We used a red triangle, yellow square and blue circle and gave three choices. Of course you'll play around and find what works best for her. I have thoroughly enjoyed reading about your journey, and you are all blessed to have one another! Our oldest daughter is blind, and our youngest son was just diagnosed with Mito. It is only because God blessed us with our daughter that we were connected to the special needs community and a mom recognized my son's Mito symptoms when no doctor had. I'd love to be able to give back, so please know that you can send me a message anytime. You are doing a wonderful job!
@K. Yes. We used a "template" before but ditched it because it was so impractical. But as I was reading I was thinking of the material that Angela has on her toy tray. I wonder if that could lay over the iPad without effecting the sensitivity. I could attach different textures to it. Hmm... Thanks. I'll have that give it another shot.
I have no idea what Angela's living situation was prior to living with you, but I CAN tell you that from the time you were able to show her photo to us, until this point, I have seen a dramatic change in her appearance of awareness. I am excited along with you to see how far this little girl can go......there is no limit at this point :-)
Communication is such a long road for little our little ones. It's just fairly recently that giving a 3-4 year old a high tech device is semi-common.
You know how big of a promoter I am of P2Go. I will say that the option is there to have one screen size button for her to push. {Sending you a photo} I just hate that you can't try it before you buy it type of thing. There is also the option instead of 4 squares, like we use, to only program in 1,2 or 3.
There are also buzzing about P2Go adapting for switch use sometime soon.
Anyway you go, Angela is growing and learning and looks fabulous!
Angela has grown and changed by leaps and bounds since she came into the family. I am so amazed at her and all that you do for her. She and Madison are two very special girls who have two very special parents. What a blessing it is to follow your blog and see God's miracles unfolding through each of you. God bless you all. Can't wait to see where the Lord takes your family next! He is so good...
It's very ironic, an article about corticle vision impairments & iPads appeared online today.
http://www.foxnews.com/health/2011/10/05/ipads-may-help-kids-with-severe-vision-impairments/
She is such a beautiful little girl, and I too have seen so many changes in her pictures since you got her. She looks happy, content and SO LOVED!!! God has amazing things planned for that little life, and for your family. Thank you for sharing your journey with so many of us. God bless you all!
The changes that I see are in her eyes and smile - that girl is loved and it shows!
Thank you SO much for sharing this app with your blog readers! It is an AWESOME match for our little guy! And our SLP is thrilled with it!
We have ProLoQue - but its just a bit overwhelming to our 2yo. He has made huge strides in the week we have had this app! (He already can use the Ipad - but motivating him to use an app to 'be his voice' has been a challenge.
Jenna
Mom to 6; youngest with quad CP
In August we had a speaker invited to our district, Dr. Christine Roman, b/c of our insistence of educating teachers on CVI. She's written a book on CVI, which you must get. She lives/works in Pittsburgh at a children's hospital, and I strongly recommend that you get in contact with her to use her as a resource. She is absolutely amazing! croman@cviresources.com 412-559-4431 I am originally from the South Jersey/Philly area, and now live in Michigan, but plan on taking Estelle to her for an evaluation in Nov or Dec.
As a side note, our biggest struggles with Estelle are also communication and mobility. We believe the CVI plays a HUGE part in both these areas. It took her several months to recover physically from the fundo, but once she did, she took huge leaps forward. Perhaps while Angela recovers, you can concentrate on the communication piece. Please let us know what works for you. We've had no luck with those silly switches either!
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