Monthly Archives: September 2015

When Being His Voice Hurts

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

Braxton came home with an assignment this week- to fill out an “All About Me” Poster. I looked at it and thought how fun it would be to work with Braxton helping him color it in and gluing pictures to show his classmates. All the standard questions were there, My name is ___, I am __ years old, I live in ___, and then there is a space for Braxton’s picture, and finally I get to “I want to be a ___ when I grow up.” I mentally filled in the blanks for all of the other questions as I looked it over, but when I got to that last one I paused.

I don’t know what he wants to be when he grows up.

 

Questions like that make me sad for a number of reasons.

For one, I don’t even know what I would “make-up” as a realistic answer because I don’t know what he will be capable of in the future. Sure, parents tell their kids that they can be anything that want to be and we don’t ever want to crush their dreams, but as a parent of a child with special needs I feel a greater responsibility to make sure those dreams are realistic. I want to always set my son up for success and one of the ways I can do that is by giving him attainable goals. Even if they are out-of-reach they should still be attainable, meaning that if he really worked hard and everything fell in to place, it could be possible. Picking something out of the sky hardly seems fair.

Secondly, I think what hurts most is  when I realize that he lacks the ability to answer for himself when it comes to likes/dislikes, preferences, goals, dreams, etc. Even if what he wanted to be when he grows up is unattainable, he can’t even tell me what that dream might be. I don’t know if he wants to be fireman, a teacher, a doctor, the president of the United States, or any other profession. And I feel completely guilty when I have to pretend that I know what he would say.

There is a big difference in speaking up for him and speaking for him. I will always speak up for Braxton because I am his parent and advocate. I will be his voice to make sure his needs are met and to be certain that he is treated with kindness and equality. Speaking for Braxton diminishes him as an individual and inhibits his ability to think for himself. Just because he cannot tell me what he wants to be does not mean that he does not have a dream for his future. Speaking for him could eventually send him the message that what he has to say is unimportant and not only will he stop thinking for himself, but he will then lack all motivation to speak for himself. I don’t ever want Braxton to feel that way, which is why speaking for him, even in what seems like meaningless situations (like a class assignment), brings on so many mixed emotions.

Braxton has made incredible progress with his Augmentative Communication Device, but he is still not able to fully express himself like I would like to see. I know that he will get there eventually and I’m so glad that we have given him the tools he needs to be independent in his thoughts and expressions. But, until he gets there I struggle with how to handle speaking for him when it is called for and how it may or may not impede his ability to speak to us later on.

So, how did I end up answering the question?

While I have no clue what Braxton would like to be when he grows up, I think we can all agree that whatever it is he decides to be, he will be totally and completely AWESOME!

When I grow up

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Filed under Family, Kids and Family, Special Needs Child

The Swingset That Almost Wasn’t

Earlier this year, I learned that Braxton became eligible for programs provided by the Department of Assistive and Rehabilitative Services (DARS) Division of Blind Services (DBS). One of the DBS’ main goals is to help individuals get involved in their community and to help them do the same things as their peers. As part of this mission, DARS-DBS will cover the cost of camps, alternative therapy (music therapy, hippotherapy, aquatic therapy, etc), learning toys, therapeutic equipment, and much more.

At a recent meeting with our case manager, we mentioned looking into buying a trampoline or playground set for our backyard. A few days later I received a call that there was money in the budget for DARS-DBS to purchase a playground set for Braxton. I was shocked and elated! Braxton loves going to the playground to swing, and now he would be able to do it anytime he wanted. Not to mention how beneficial it would be for our in-home therapists to implement in their programs. We were thrilled and made plans to meet our case manager at the local Walmart to make the purchase.

The elation was short lived.

We arrived to Walmart and ran into issues making the purchase. The cashier did not know how to process the transaction using the DARS-DBS state credit account, so he called a customer service rep. The rep (who was in no hurry at all to help) finally arrived and completed the transaction. As we waited for help to load the swing set into our truck, the rep frantically came back and told us there was a problem. He said that this type of transaction was not allowed and we could not take the set with us. Our case manager tried to explain the process to the young man and let him know that the program makes purchases like this throughout Texas and have never had an issue. As the rep repeatedly huffed, puffed, and rolled his eyes he continued to insist that this wasn’t allowed per his manager. He was reluctant to help and refused to call the 1-800 number on the voucher for further instructions. When we asked to speak to the manager, he made some calls, and then simply turned around and said “Yea, my manager said we can’t do this.” After demanding to speak face-to-face to a manger, one finally arrived. We explained the situation again, pointed them to a 1-800 number on the voucher and asked that they please call that number to verify the purchase rules and how to go about processing this for us. After some time, the manager and customer service rep returned to say that hotline was closed so they could not get through to anyone who could verify this type of purchase. This all happened over the course of about 2 hours.

At this point, the manager was at least somewhat apologetic about the situation, but adamant that this type of purchase was not allowed at their store. He even brought out the Asset Protection Manager who tried to tell us keying in the account number was absolutely against company policy. He stated that he would attempt to call the number the next morning to try and get it resolved. Our case manager made plans with us to meet again the next day.

The next day arrived and our case manager called before we all headed up to the store again. The manager said he had not yet called, but would call ‘within the hour.’ Over an hour passed with no word, so our case manager called him and he said that he had been trying “all morning” but the line would just ring and ring with no answer. The case manager called the number herself and got right through. She obtained some further information about the Walmart Corporate office to give to the store manager to hopefully resolve everything. After several phone calls and several hours, everything was finally resolved and the manager gave the okay for us to make the purchase. We returned to the store and again the cashier did not know what to do and called a customer service rep. We told them which manager we spoke to and asked that they please call him to verify that the purchase could be made. Finally, the purchase was completed and we got the swing set home.

The entire situation was so poorly handled by nearly every employee involved. Having worked in retail, I can certainly understand the frustration something like this brings, but I do not at all understand the pure lack of empathy and poor attitude by the entire staff. Not one person was willing to go above and beyond “what they’re paid for” to help a customer.

There are several things that could have been done to help us out from the beginning. For one, the customer service rep should have brought the manager over immediately instead of making us feel like a burden for making him do his job. Secondly, he should have called the hotline when we arrived and the office would have been open. Instead, his reluctance dragged the time on which made us miss the people who could have helped everything. Thirdly, when our case manager brought it to their attention that she has personally made these purchases at nearby Walmart locations, the manager could have offered to call one of the other stores to speak to a manager who has done this before, but that never crossed his mind. Lastly, once the manager finally learned that this type of purchase was allowed, he should have personally gone over to the garden center and/or Customer service to let them know we would be returning to make this purchase. None of this was done. In fact, absolutely nothing was done or said to help rectify the situation.

The really unfortunate thing is that we are not the only family in this area served by DARS-DBS, and now because of this experience it would be difficult for our case manager to take another family there only to be turned away. If the manager did not prepare his staff for our arrival the day he learned of this program, it is highly unlikely there will be any storewide training and every family who enters will be made to face this kind of treatment, which is absolutely unacceptable. They have lost business simply because of their unwillingness to learn, adapt, and go above and beyond their pay grade.

Braxton on his swing set

We finally put that swing set together this week. The pure and simple joy on my son’s face, made the hassle worthwhile, but it reminded me of the fight we face all too often with the “gatekeepers.” The gatekeepers who keep us from making appointments in a timely manner, the gatekeepers who keep us from services that could greatly help my son’s quality of life, the gatekeepers who show no emotion and no empathy for the very people they are supposed to help. Everything in our life has been a struggle. Getting a swing set to help my son be like other 4 year olds frolicking in their backyard wasn’t supposed to be so difficult. There was a time I didn’t know if he would ever be able to swing or slide down a slide at the playground, much less one in our backyard. Thanks to DARS-DBS he can now have that experience just like other kids his age.

 

Swingset Therapy

The set is also now a huge part of our therapy plan. Our Physical Therapist has already had Braxton outside working with him to climb the stairs so he can slide down all on his own. I stood by and watched as they worked together. I saw Braxton’s foot go up to the next rung unprompted and thought of all the hard work it took for him to gain that skill. For now, he needs help, but one day (soon) he will be able to maneuver the playscape with little to no help. What a shame it would have been had we allowed yet another gatekeeper to keep us from having this experience.

If this makes it back to our local Walmart, I want you to look at the joy on this little boy’s face, and I want you to know that YOU helped put that smile on his face. Yes, you made it quite difficult for us, but at the end of the day it doesn’t matter whether you apologized or admitted you were wrong (although that would be nice), what matters is this sweet face and the fact that YOU have the potential to help other kids like him with much less hassle. I hope that you learned something from having us in your store. I hope that you share what you learned with others so that this wonderful state agency can continue serving children in our area. All of our children deserve a chance to just be children. Not children with disabilities, just children. Children who want to play and be free and be loved. Please don’t take that away from our sons and daughters.

 

Braxton on the slide

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Filed under Life, Special Needs Child