Tag Archives: children

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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FTA Week, Day 4: We Can All Use a Little Help

FTA Week Flyer

FTA Week Flyer

Today’s topic is “We Can All Use a Little Help: What can friends and family do to be supportive, what do you want them to know?”

The Feeding Tube Awareness site actually has a really great outline for Friends and Family of tubies.  Worth a read! 😉

We have been very fortunate thus far to have such an amazing support system in place.  Our friends and family have been great, so when you guys read this, give yourself a pat on the back! And THANK YOU!

Some pointers for others who have family members or friends with tubes:

You may have to be assertive when you offer help.  – For us, I think it’s safe to say Joseph and I both don’t necessarily like to admit that we need help, and we also don’t want to feel like a burden, so when you ask, we’re probably going to say no.  If you really want to help, just do it.  “Show me how to feed Braxton, you go take a hot shower.” I think there are a lot of people out there like this, so if you really mean it and want to help just do it.  There are lots of things you can do. Actually, Mommies of Miracles put together a handy guide of possible “gifts” and many are just ways to help.  [Please don’t all run out and do them all at once.  Seriously.  We really do feel supported. I just want to put the list out for anyone else who comes across the page, but may not know how to help others]

Ideas on how to help caregivers

Ideas on how to help caregivers

Our tubie isn’t going to break. – It’s easy for some people to feel like they have to be gentle with a tube-fed child so they don’t rip the tube out or cause discomfort.  Now, I’m not saying to be careless or just yank the tube out, but many kids can tolerate “normal” playing.  Take your cue from the parents.  Fortunately, Braxton is just a regular little boy and I foresee more hospital visits for little boy things like broken bones and stitches than we’ve had so far for his condition.  haha There’s no stopping him when he gets older.

Be mindful of our schedules. – Don’t be offended if you invite us out and we say no. It’s not that we don’t want to hang out with you, but it really does take A LOT to work out qualified babysitters.  It’s hard finding a good sitter for “typical” kids, so finding one who can properly feed and care for Braxton is even more difficult.  Our parents live out of town, they are the ones we trust the most and they know all that Braxton requires.  For the most part, they can’t just get here at the last minute (so, if you invite us an hour before the event, don’t count on us being there – we need a little notice) Don’t give up on us though! If we can actually plan something out, we’re more than happy to go out or have dinner with you!

Have a willingness to learn.  – We are so fortunate that our family has a true will to learn all about Braxton and all that it takes to care for him.  It really means a lot to have people who WANT to learn and be more educated.  Again, thanks to our awesome support system.

Stand up for us. – The world is quickly becoming a frightful place full of hatred and fear of the unfamiliar.  Braxton and other tube-fed children are not monsters. They aren’t aliens.  They are regular kids with real feelings.  If you see someone teasing a special needs child/person, using the ‘R’ word (retard), spreading animosity — remember Braxton, remember the people you know whom you love and care for.  More importantly take it as if it were YOUR child.  What would you do if someone was being disrespectful of your child? Don’t be afraid to take the opportunity to stand up for us and educate the person.  True, that some people will never change or understand, but how do you know they won’t if you don’t try? Also, take the time to educate your own children about accepting people of all abilities.  Children are much quicker to learn, accept, and move on.  Teach them young so that when they are older they can pass that on to their own children.

Thank you again to our family and friends, you guys have been awesome and we really can’t thank you enough!

Tomorrow’s topic: Happy Valentine’s Day! I love my tubie!

For all Feeding Tube Awareness posts, click here!

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This blog on our lives – Dad’s thoughts

I very rarely get on here to post my own personal opinions about certain subjects.  I normally let Vanessa do the talking as she is a much better writer than myself.  I can’t begin to thank you enough for showing interest in our son.  I will admit that it is hard to explain to people what is wrong with my son when I feel that there is nothing wrong.  The kid smiles, rarely cries, and is so motivated to learn new things that I don’t see his age, but rather his progress.  This is my first child.  So therefore everything he has done is a blessing.  The kid could barely crawl and now this dude is in the kitchen climbing up the pantry shelves trying to get candy.  Ok, so maybe that last little bit was a lie, but you get my point.  Back to the reason I am writing this blog.  I have seen such a HUGE improvement with Vanessa.  Not at all saying that she was crazy before, well… let’s not get into that PARTICULAR subject haha.  But, I honestly see an improvement on her outlook.  We can turn this unexpected reality into a blessing that no person could have ever imagined.  Her ability to reach out and help other people has just blown me away.   Her knowledge continues to grow on all of Braxton’s conditions.  I feel that I need to my handy dandy notebook around when she talks just in case there is a quiz later on this sermon.  HAHA.  I really mean it when I say thank you to everyone who reads and comments on this blog.  I know she is one dedicated person, especially to my son.  When she was breast feeding she would wake up every 4 hours to pump just so he had the proper nutrition.  This went on for over 9 months.  I was PRAYING for the day that she would be able to sleep longer than 3-4 hours.  She is similar to me in the fact that when we don’t have much sleep and we are hungry…well…Godzilla seems to come out in us and we attack the city.  😀 So when this blog came around I was all for it.  I know her being able to release her emotions and concerns has helped a lot because everyone needs to find some way to release their feelings.  This blended diet has been the best thing for Braxton which proves that formula is not always the best thing for a child.  I recommend it to anyone who is having problems feeding their children without throwing up.  I used to get an evil eye from people that would stare at my son while i feed him with a syringe.  I wanted to stand up and yell out “What are you looking at you ignorant MF!!”  But, then I realized that some people were never taught proper manners and are naive to think that feeding through a tube is so “special.” I honestly am all for the tube.  I think that it is a great thing.  I find out too that this is not uncommon either.   We have gone to meetings where the families talk about losing their son at 4-6 years old from an undiagnosed syndrome. 4-6 years old!!  That is horrible!  I can’t even begin to imagine their pain.  So if my son needs to be feed through a tube for all to see then so be it.  I am finding that is could be much worse so in stead of focusing on the negative, I need to focus on the positive. The kid laughs, smiles, and tolerates more than the average kid and I am proud to say that I am his father.  I fear him going to school and being teased about whatever his condition may be.  Hopefully the tube is out by then, but who knows.  I know his hearing loss is probably from my side of the family as I had hearing problems as a child also.  I know one thing tho, music is in his blood.  As son as I start to play some melody for him on piano he will stop, look, listen, and fall asleep.  I keep getting way off topic which is a very common thing for me.  I apologize.  So with all being said I appreciate all of you guys.  Some of you are old high school friends of mine and some of you are people I have never met.  All I know is that you guys have given Vanessa the strength to carry on in a normal happy life.  I appreciate that and will continue to do anything I can to help our family live as “normal” of a life as possible.  Now that I said that I don’t mean that.  About the “normal” thing.  IF anyone knows me then they know that I am not normal LOL. I just pray that we live the lives that God planned for us to.  There is a reason behind everything even if we don’t see the miracle yet.  So thank you and I hope you continue to keep up to date with these blogs.

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What’s been happening

Well, that took entirely too much time to set up! I should have started this months ago!! Well, you have an update and everything that’s been going on and where we stand with all the doctors.  Just a little more about the past month or so…

Most recently, Braxton was in the hospital for pneumonia and croup. 4 day hospital stay…not fun! He’s been a pretty noisy breather since birth and seems to ALWAYS be congested and has a never-ending cough.  Well, I started noticing the cough getting worse and then he started running a fever.  Then, he just didn’t seem like himself at all. Just lethargic and cranky.  Took him in to the pediatrician and she did a CBC and his white blood count was elevated which showed the likelihood of something bacterial instead of just a virus, so she gave Brax a shot of Rocephin (a pretty powerful antibiotic) and told us to follow-up in the morning.  She said it was pneumonia and sent us for a chest x-ray to be sure.  We hadn’t even left the parking lot and the Imaging place had already called the doc to confirm.

We went in the next morning and Brax didn’t seem any better.  So she gave him another Rocephin shot and sent us home with a script for an oral antibiotic to start the next day.  Later that day, I just didn’t feel like the shots had done him any good.  He was still just very sleepy and not wanting to eat or anything, so I called to see if I should be worried.  I mean, I know this is pneumonia and no shot is going to make him be ok within hours, but I thought I should at least have seen SOME improvement and I hadn’t.  Sure enough, doc agreed and said to take him up to Dell Children’s ER and see if he needed to be admitted.  He was admitted, mostly because I told them he was having problems keeping feeds down and they didn’t want him dehydrated so wanted to keep him overnight.  Well, overnight turned into 4 days.  His fever spiked up to 103.8 a couple times and he had several breathing treatments and oral steroids.  Finally, his fever broke and he started coughing less and even kept his food down.  They let us go home.  He’s been ok since then at home.  Just about back to his normal smiling self.  He still just doesn’t really seem to want to eat though.  In fact, I think his stomach shrunk since he hadn’t been eating well the past few weeks.  We’ve had to step back down on his feeds to work him back up to his full feeds. Ugh..it’s never ending I tell you!

Hospital Pics…. even in a purple hospital gown, he’s gotta be the most adorable baby ever! 🙂


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