Thursday, May 30, 2013

My Future is Bright

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Last weekend Noah and his friend Jayden, hung out at the zoo together.   We first met Jayden when the boys were really little and they had therapy schedules at the same facility and time of day.  And over the years we keep crossing paths, which has always been nice and we finally coordinated a time to hang out together, just for fun.   Jayden has an awesome mom, and totally saved the day when we realized that there was miscommunication that left us without packing Noah lunch.  And without pureed meals we're pretty sunk.   Thankfully she had applesauce and saved the day.  As special needs parents, we have a tendency to pack for all kinds of situations, and it often takes us hours to plan exactly what we need.   We are generally prepared for all types of sudden weather changes, extra clothes, diapers, supplies, sunblock, food, drinks, cool packs and sprays, and in my case a service dog and all his gear in tow.    So we were extra thankful that Jayden's mom came with extra food to compensate for each my husband and I thinking the other one packed Noah's food.
Jayden & Noah

It was a really great relaxing day, the boys share the same love of the train at the zoo.  It was a lot of fun, and we can't wait to do more things with Jayden and his mom this summer.  The boys have a great time together.  Samson did really well too.  It was his first time to the zoo, and he did great.  There are of course certain areas of the zoo he is off limits in because he can disturb some of the animals there, but that was okay, we didn't mind skipping those at all.  We filmed his lesson four, and hope to hear that he passed soon so we can move onto lesson five. 
Samson & Noah

Lots of new things have been developing for Noah.  Which of course is taking a lot of time on my part to coordinate.  But it comes with the job of advocating for a child with special needs.  We are exploring custom seating evaluations and a power wheelchair for Noah.  Yes I typed that right - a power wheelchair for all those medical professionals who say it's not possible... Noah's going to just blow your minds and show you what he can do.  Nothing I hate more is when someone doesn't believe in Noah.  I don't believe in doctor's discouragements - but that would need it's own separate blog post.  I believe in Noah.  I see his spirit and what he's capable of... and I won't ever give up on him.  He can do this. 

We've also been trialing communication devices for Noah for a few months.  We've tried both the Dynavox and Tobii.  We were tremendously impressed with the Tobii system.  It has some incredible features and Noah is able to navigate it well, and is making choices.  I love that we only have to calibrate Noah's eyes once and the system will remember him each time, unlike the Dynavox where you have to calibrate it every time you use it.  It will also have the ability to transition to a proximity switch as we think Noah will likely have the potential to use his hands and arms with more accuracy with time.  I also love that they have something called a PCEYE which is a eye gaze device that hooks to any computer by way of USB port and any child can activate a computer using their eyes.  The technology is breathtaking.  And I'm thrilled that Noah's therapy school is considering obtaining one for children like Noah.  The new model that just came out is dreamy and I'm so excited.  It has a big sticker shock price tag of nearly $20,000, and now we await Medicaid approval.   But I love that Tobii has it's own attorneys on staff ready and waiting to fight if there is a denial... now that's a company I love.  One that will fight alongside you.   I have enjoyed their customer service representative that we have been working with, she is very knowledgeable and will train us for four hours when the device arrives.   It even has the capabilities of allowing Noah to change channels on our television, turn it on and off and even be mounted so that his eyes can be detected in the dark when he's sleeping and he can alert us if he needs us in the night.  Pretty awesome stuff. 

And we decided to do summer school with Noah one day a week this summer.  We weren't sure how it would go as in the past other children tended to overwhelm Noah and his attention and patience span isn't very long.  We made it a whole hour and fifteen minutes, and I love his classmates and teachers.  We are really blessed that Noah was granted a scholarship to be able to attend his therapy school, which integrates an equal amount of typical children and children with special needs.  So these children already have a great understanding of children with differences, so they don't see Noah as handicapped.   They are interested in him, they touch him, bring him toys, talk to him like he is just like them.  They have some questions about him and are naturally curious but seem to have this unconditional love and understanding that many adults never develop.  I will have to go with Noah each week, as he's too involved for anyone else to care for him. Which is okay, as I know Noah's limitations well, even this last week I knew during recess that Noah was done and had to go home before his meltdowns started.  Next week I hope that we'll be able to stay long enough to have lunch with his classmates... that's our goal.   I just love how it feels so comfortable there, everyone genuinely cares about Noah and including us. 

Keep standing, keep believing and keep hoping because God has a bright future in store for you!


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sunday, May 12, 2013

Mothering Noah

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I toured the Christian book store today, in search of a precious grandparent gift for Mother's Day for Noah's grandmother.   The sales representative seemed to buzz me like a furious little bee, overly active, talking faster than I could digest and in a moment she stopped in her tracks looked at Noah and looked up at me with that look that I'm so familiar with.  It's a recipe of a hint of sadness, a dash of I'm sorry, with a sprinkle of admiration, and a teaspoon of gratitude, hope and faith.   She paused and waited as if longing for me to speak about what she was seeing, confirmation of knowing that something wasn't quite right with the child next to her in a stroller, with awkward movements and infectious laughter. 

I looked up at her holding a ceramic angel in the palm of my hand, and said "it's like parenting alongside God.  I don't do it alone."  My answer must have comforted her curiosity and she went about the store collecting merchandise she thought I might adore.   Her nervousness perhaps an apology for not being able to ask the questions that she had wanted to regarding Noah. 

I'm sure there are lots of people who stumble upon us while we're coming and going from therapy, a trip to the store, a simple haircut to stop and wonder what life must be like for a mother of a special needs child.  In some aspects it's very different than being a mother to a typical child, yet sometimes the experiences are much like all mothers enjoy.  My heart still beams with pride over every little accomplishment Noah does; bearing weight on his legs, improved head control, or being able to grasp my keys for the very first time.  I have hopes and dreams for his future, I hug and love on him just the same as any mother would do.  There are also some big differences from other mothers.  Our days consist of therapies and appointments, dealing with various agencies, therapists and doctors.  Chasing down opportunities that don't otherwise exist for him without advocating for his needs.  I puree his meals, make bottles, hold him, transfer him to chairs, car seats, the floor... thinking of creative ways to incorporate his limitations into a functioning world. 

The job requires little sleep as my eyes remain glued and fixated on every breath he takes on a digital video baby monitor, my ears constantly tuned in for any sounds of a struggle indicating Noah is stuck in a position and needs to be flipped over or a sign that he needs comforting and care.  I digest and evaluate every gag, sigh, laugh, and movement to make sure that it at all times is Noah's baseline and typical for him.  I've masted the art of diagnosing a potential ailment or illness without a verbal child to tell me what his problems may be.  I know his limitations, I know when he's sad by looking into his eyes, I know what each inflection of his laughter means.  I remain on high alert and guarded at all times, there is no relaxing when you are a parent of a child with special needs.  Other parents might be able to pacify their children with juice bottles and a snack, while I rush home quickly between appointments to hand feed a child who can't do it himself.   Other parents may be able to negotiate with their children to calm down with promises for a candy or a toy, where I lack the ability to do that and retreat for the comforts of home for Noah when he declares he's had enough and wants to leave where he is at.  It is a very purposeful way of parenting.  A well oiled machine, fueled with love, synchronized to the care of your child. 

But even on the most challenging of days, I am so grateful for Noah's life and that he is here with me.  My boys are amazing and I am blessed on Mother's Day to have everything that comes with it. 

No language can express the power, and beauty, and heroism, and majesty of a mother's love.  It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star.  ~Edwin Hubbell Chapin


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, May 7, 2013

Medicaid Terminated... AGAIN!

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I wonder just how many times I've blogged exactly about termination of benefits... it seems like its a habitual thing.   I used to think it was a mistake, but now it almost feels purposeful that it happens so often.  We're not the exception however, but rather the norm.  Loss of benefits for lack of reason happens frequently to many families.   And I'm sure they are just like me spending literally an entire day on the phone trying to get it straightened out, begging anyone who will listen to help you as you bounce around agencies, SSI to Medicaid to a agency called Maximus (who manages certain Medicaid cases for Medicaid), back to Medicaid, Back to Jefferson County Early Intervention Services, back to SSI again, all for everyone to tell you, they have zero clue and no one can help you.   It seems that everyone's explanation this time for why Noah was terminated was because I ignored a notice in the mail - which came looking much like insurance advertisement - lots of brochures and pamphlets, with a letter of course that I didn't bother to really read in my busy day saying that if I failed to respond that Noah would automatically be enrolled in something called Accountable Care Collaborative (ACC).  During the transition of automatically enrolling Noah, without my consent (since I failed to respond and tell them not to) kicked Noah off of Medicaid during transition.   Noah has actually been without insurance since the first of May, but I wasn't notified until his supplement service called to inform me they couldn't bill Medicaid because he had been terminated... surprise!  And of course the bonus was Noah had a doctor's appointment today as well... not the best timing. 

After a very long day advocating and really being more "firm" than is in my nature I am told Noah's Medicaid has been reinstated and will show active within 24-48 hours again.  I of course will still have to call to "dis-enroll him from Accountable Collaborative Care (ACC) when the system shows his Medicaid has truly been restored.  My mother always told me you gather more bees with honey.  But when you are dealing with government services no amount of honey in the world can sweeten them up to help you.  Sometimes you just have to flip the "Bitch Switch" to be heard.  Which really is terrible thing to have to tell special needs parents just starting out on the journey.  But it's true.  If you are too quiet, too nice, nothing gets done.  And I hate more than anything that as special needs parents many of gain this really unfavorable reputation for being truly difficult people when all we are trying to do is advocate for justice for our child. 

I had the opportunity to attend a Anat Baniel Special Needs Parent's workshop for Noah.  As many who follow Noah's journey know, we have been doing ABM/Feldenkrais therapy with Noah for sometime.   It's has been and continues to be a therapy that has proved to be very beneficial for him in his life.  And one that we feel is essential to helping him continue with his physical progress.  We originally had applied for Noah to do a demonstration with Anat during the workshop, but ultimately he wasn't chosen.  They used a child around the age of one.  Although she had a scary diagnosis at birth, appeared to be meeting all milestones and was beating all birth predictions.  I spoke to lots of parents who felt really uncomfortable with the fact they were using a typical developing child to demonstrate on.  While at the same time we were relieved for that family, I think we all were longing to see a child with some sort of physical disability or limitation.

The workshop was emotional on many levels, at times it was a room filled with some really wounded hearts over our special needs children, we all share the same pain and are walking the same road.  Anat has amazing insight, she is a truly gifted thinker and left me with many things that were valuable in helping Noah daily.  Anat is kind, sensitive, genuine and straight to the point.  So many of us are so desperate to "fix" our children that we forget the main goal is to "connect."  I would recommend to anyone who has the opportunity to attend one of her workshops to do so, it might just be the fuel you need to keep going.   Hopefully, one day Noah might have financial opportunity to be able to go to California to see Anat and her team. For now, we'll just try to keep doing what we're doing since we can't afford the big price tag that accompanies it.  

I took Noah out to the mall yesterday, for some one-on-one time and left his brother with his grandmother for a little bit. It was nice just to be with my big buddy and give him all my complete attention.  I bought him a new fishing hat for the summer since he's grown and some new swim shoes for warm water therapy.  I tried on some clothes, even knowing I couldn't afford to buy them, he laughed and giggled at me in the dressing room.  And I must say Macy's was amazingly awesome.  The only store we went in that actively made a point to ask me if they could help me or assist me or if I needed anything at all.  Most people everywhere look past Noah and I.   I've grown rather used to it in a way.   So it's always such a kind surprise to feel like the world sees you and cares about you.  Thank you Macy's for making me feel like a valued guest in your store, even with an apparent disabled child by my side!  I'll likely go back to that store, even if I don't need to purchase anything at all, just because they were so friendly to me.

"I have different hats; I'm a mother, I'm a woman, I'm a human being, I'm an artist and hopefully I'm an advocate.  All of those plates are things I spin all the time."  - Annie Lennox


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.