“Stone walls do not a prison make, Nor iron bars a cage…”

photo-writing challenge-creativity

Parents of children with Autism and Special Needs often feel the weight of the world on their shoulders. Indeed it is not an easy journey, countless obstacles, illness, exhaustion, and sensory overload often keep us in. As I look at the photo above, I am reminded of a poem by Richard Lovelace –

Stone walls do not a prison make,
Nor iron bars a cage;
Minds innocent and quiet take
That for an hermitage;
If I have freedom in my love
And in my soul am free,
Angels alone that soar above,
Enjoy such liberty.

 

As the cold months of winter linger and cabin fever sets in, my 7-year-old non-verbal son whines more and more. Who can blame him? We’re all longing for spring and sunshine. Last winter I read my gardening book (I have no time while the weather is nice) and I made a garden plan. I was surprised how much quicker the last weeks of winter passed by as my thoughts were already on spring.

This year I am enjoying the retreat, as I try to master some gluten-free baking. After 6 years of therapies for feeding difficulties my son is now eating some solid foods – muffins, toast, deli meats and fruits. We were so close to needing a feeding tube that the GI doctor actually gave us the lecture that our son could not afford to lose even one pound. I’m happy to report that our son is now in the 90th percentile for height and weight. We no longer have to push him to eat. It’s finally ok for him to not be hungry. The GI doctor said, “Whatever you’re doing – it’s working, so keep doing it!” What a relief.

Our son is on a gluten-free diet with restricted egg and dairy. Luckily for him he does not miss the foods he can’t have because he never ate them to begin with. Our family follows the same diet (for the most part) for simplicity – I refuse to make each member of our family a special meal when we can and do find things to eat that we all enjoy. (More on gluten-free cooking and baking here: http://glutenfreeonashoestring.com/ )

So winter has become our “down time” to practice the things we want to get better at (like cooking) and a time for planning for the future. As I look at the picture I try to think of more creative ways to pass these winter months indoors and I’m brainstorming ideas for my son’s symbolic garden plan. What things can we do this month to prepare for spring? What things can I teach him or work with him on that I may not have time for when the weather is nice?

My son has no formal “language” and limited communication skills. His receptive skills are much higher when we use both ASL and spoken English. The combination of obstacles he’s had to face make communication his biggest challenge. Stephen has a history of combined vision and hearing impairment and he is legally deafblind. He was diagnosed with Cortical Vision Impairment (CVI) at 8 months old, and then with Autism at around 18 months, then at age 2 with moderate to severe unilateral hearing loss (deaf on the right side.)

Stephen still has issues that decrease his usable vision and hearing and it is now more difficult to get the services he needs. Improvement in his vision and hearing have been both a blessing and a curse. He has learned to navigate the world as a deafblind child and is now expected to forget what he’s learned and just start using his vision and hearing. The doctors have not been able to provide as much useful information about Stephen’s condition as we would like. In this world of technology we expect doctors and medical professionals to have all the answers, and we’re disappointed when they don’t. So we’re forced to take a more creative approach and imagine all of the possible outcomes and what they would mean for our son.

So we press forward, tying to build consistency in the use of language – spoken, signed, and symbolic (PECS – Picture Exchange Communication System.) We had to change AAC (augmentative and alternative communication) apps because the app Stephen loved wasn’t appropriate for him. After months of work adding photos and recording our voices, Stephen deleted the app. Unfortunately the app did not have a backup function or restrictions (a.k.a. parental controls) so all of our work was lost. Now Stephen will need to learn a new app. We decided on Proloquo2go because of the full function, pre-built and customizable options, as well as the ability to backup and sync, not to mention a full range of restrictions to prevent him from making changes and deleting things. Of course this makes the app much more boring for Stephen – there are no click start – stop sounds to self stimulate to, and he cannot press the same button over and over because we’ve restricted him. We are very happy with our choice of communication app, but we will now need to work toward getting Stephen motivated to use this new app that can grow with him all the way to adulthood.

Now is the time to start laminating those symbolstix PECS I printed out and getting our materials ready. We can add them as we learn them if we have the materials (or at least some materials) ready ahead of time. Soon it will be time for Challenger Little League and we won’t have time for all these indoor activities… (More on teaching learners with multiple special needs here: http://teachinglearnerswithmultipleneeds.blogspot.com/2011/02/symbolstix-are-everywhere.html )

Exposure to children with a range of abilities and disabilities is key for Stephen. He will most likely need to navigate the world of the blind, the world of the seeing, the world of the deaf, and the world of the hearing. He will no doubt, have an unusual perception of the world around him.

(More on deafblindness here: https://nationaldb.org/library  and blindness here: http://www.perkins.org/)

http://dailypost.wordpress.com/2014/02/03/inspiration-images-1000-words/


Image courtesy of Creative Commons and Daily Post
Creative Commons License
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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28 thoughts on ““Stone walls do not a prison make, Nor iron bars a cage…””

      1. I don’t know why the link ended up here twice, but that might be a good thing. 😀
        But since I’m an ADHD/Asperger myself, it’s nice to find blogs writing about NPF in many different aspects! Even if my own issue with my blog, doesn’t focus most on that.
        You’re welcome to visit!

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      2. Thanks Ninna, I’m new to blogging this will be my second month. I’m going back and forth between my computer and my iPhone app trying to figure out all these buttons… It took me awhile to find the like buttons and the follow buttons on the mobile app – then I realized the follow button is all the way at the top in the mobile app – lol. So needless to say I absolutely will visit your blog- I never would have guessed you had ADHD/Asperger. My husband also has ADHD and it’s difficult for him to manage – even as an adult! I’m not familiar with the term NPF, so I’ve got to ask – What does NPF mean?

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      3. I don’t specifically write about adhd. I am who I am! And we are all very different. One adhd isn’t like the other.
        I know it has hindered me during life, but it is more of a gift. So many good qualities are also included in the spectra. People who don’t know about us, only think we are lazy, violent alcoholics. Some can be, I guess, but mostly we aren’t.

        NPF stands for. (if I get it right) Neuro Psycological Function-disabilities.
        Even though I don’t agree about the “disabilities”. We are quite able to do a lot of things! And we do it really well!

        I have an about-page with a bit of this, but it’s written in swedish and I don’t seem to get around writing it in english. (thats adhd :lol:)
        Perhaps I should try to make the effort doing that now, when I spend my days on the couch…
        It’s just that I’m having so fun making new pictures!
        hahaha

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  1. It’s great to read this and share in Stephen’s perception of the world. His inner creative world sounds unique. Just a month left maybe of down time for us all, surely Spring must be on its way!

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    1. Thank-you Lita. Yes, Stephen loves music I think it’s his window to creativity at this point. He hums, he plays with his keyboard. When he thinks no one is listening he plays sweet melodies, but he’s so funny – when he notices someone listening then he gets more haphazard like most kids his age would play. I think what’s most interesting of all is how he uses his choice of songs (on his iPod) to communicate. We had a snow day yesterday,and a 2 hour delay today, so I sure hope spring comes soon! In the mean time I have lots to do durring this down time and the change of pace has helped spark some creativity in my life 🙂

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      1. Stephen’s playlist on the iPod sounds a great expression of identity. Makes me look at mine in a new way. Just now it’s mainly broadway musicals and not too inspiring! Maybe Spring will change it.

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  2. That poem is so strong, and speaks to people not only with autism, but those experiencing anything trying.

    You’re such a strong, smart, caring woman and other. I think everyone could use a little of your selflessness. Even though I do not have Autism nor know anyone who does, I feel for cause.

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    1. Yes, I was hoping people would read the poem and think of different situations that test our patience and perseverance.

      Thank-you for the compliments. I’m so glad you commented on this post. It’s great to know there are people out there that support the cause – even if you don’t have or know someone who has Autism! I’m hoping to continue writing things that will interest, amuse, and inspire all different types of people. And I’m so glad you found your way to my blog 🙂

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    1. Thanks for the pingback! Life is an amazing journey and I can’t wait to hear more about yours 🙂 It’s awsome to read about such interesting people and unique storries! Thanks to all my fellow bloggers!

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