There were things I pushed and dared myself to do - like drive the road to Hana. Which is an insane road, even for an experienced mountain driver like myself, but it took me to some of the most breath-taking destinations. Black sand beaches, water that swelled red with shrimp, beautiful and peaceful cemeteries that I walked through, high cliffs and the ocean that I had never ever seen before. The bluest of the blue that just went on for what looked like eternity. I learned to love the stripped down version of myself there. I went without make up, my naturally curly hair completely untamed, wild and free from products and hair accessories, my dress attire simple Hawaiian sundresses. I had my first Mai Tai drink and went to a traditional Hawaiian Luau. I did all the tourist kinds of things like a dinner boat ride, submarine exploration, and found myself emerged in a freak wave from the ocean while attempting to build a sandcastle in the sand like a small child. I lost a flip flop, and the beach chair from the hotel that all went out to sea, and learned sometimes when your back is turned that you can get hit by the biggest wave when you least expect it.
Yet, with all the things I did, it was that banyan tree in Lahania, Maui that perhaps gave me the biggest lesson of all. It's this incredibly massive tree with branches that are just endless. The tree's canopy spans a quarter-mile, but it's base perhaps the most intriguing. Buddhists refer to it as the "tree of enlightenment.' The banyan tree is majestic and strong and represents personal growth and wisdom. Through life's experiences your roots get driven down deeper, and you become even stronger - stronger than you ever thought you could be when you were simply starting out as that small tiny seed. When I touched it, it was like the tree was schooling me. I sat there in awe of it's enormity. Yet, in hindsight I hadn't a clue what it was trying to tell me at the time - I just was allowing it to record it's message into my soul, so that I'd be able to replay what I needed at a later time.
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There are countless times once you become a special needs parents that you have to exercise being unpopular. Times when you have to have the bravery, courage and strength to be your child's advocate and champion in all things. You cannot take the path of least resistance - even when you may want to. Finding your footing the equivalent to realizing how deep your roots are planted and just how strong your branches are. You can't look back on anything with regret, because the focus is always and forever the best interests of your child.
It is often very difficult to find quality therapists - especially the older your child grows. It's almost as if therapists prefer to wash their hands of children once they get to a certain age in childhood and express to parents that their child has no more potential to progress. In reality the their jobs indeed do get harder, just as our jobs as parents get harder as they grow. There is more lifting required, sometimes limbs stiffen more, children's over all tolerance may vary, and it's not as easy as it is to work with a three or four year old little cutie. What I call therapist abandonment happens frequently and for a variety of reasons.
I had such an abandonment today in fact. In the course of four years Noah has gone through six speech therapists. It's a type of therapy that simply doesn't have therapists that have a longevity of their profession. Many leave and move onto jobs in public schools, or resume furthering their education, leave to become instructors, some have complete career changes - turn over for speech therapists is uniquely high - higher than both physical therapists and occupational therapists combined. Finding a therapist - a good therapist that is skilled and proficient in AAC communication is very hard. Most therapists may briefly touch on those things, but unless your child has a mild speech impediment, or needs to learn sign language your options for AAC therapists are super small. Three years ago, Noah's then speech center no longer had an in-home therapist willing to drive to our area and we were transferred to a "sister company."
It was evident that the our first therapist with the new agency was new both to her job and profession and lacked that employment spark and interest and made it known that the job was a stepping stone and resume builder for her attempts to further her education. Half-way into our year with her she told me that Noah wasn't making significant progress and that it wasn't worth the investment of her time and asked me to invite the owner of the company to come along to one of Noah's sessions so she could show that Noah was making no progress. I should have kicked her to the curb then for having little faith in my child and should have had the backbone then to speak up and tell her that it was indeed her shortcomings of knowing how to work with children an AAC devices, yet I consented to the meeting which years later turns out wasn't even the owner of the agency - in fact to this day I have no idea who her companion was that she was demonstrating that Noah had no capabilities in AAC communication to, even though he had and was using a device for some time. She eventually decided to pursue a master's degree in Georgia and I was relieved that I didn't really have to address her lack of confidence in Noah and his capabilities.
You always hope you will get an upgrade when any therapist moves on to something else. But my hopes were quickly dashed when her replacement worked at a local college as a speech pathologist instructor and made it known that she had little time for Noah. In fact, I was lucky to see her once monthly, even though I know she continued to bill Medicaid for weekly visits and was thereby committing fraud. She hated Luke, and demanded that I have him leave the home while Noah did therapy - something that was impossible. Luke never caused any trouble but she did not appreciate his presence nor his interest as a sibling. I got in the habit of asking my mother to come over to play with Luke in his bedroom to pacify her dislike for Noah's little brother and her unwillingness to allow him to simply watch his brother's therapy session. I spent eight months asking her to do an evaluation and trial for a new speech device for Noah only to be met with continual excuses and resistance for ignoring my continual requests. The final straw was when she called to tell me she had acquired PTSD because her neighbor's house had been broken into and she couldn't see Noah for two more weeks until she recovered from the stress. I expressed my concerns to the company and at that time was met with understanding.
A temporary therapist came into the home to conduct the evaluation for Noah, complete paperwork and submit referrals. He was a rather impressive therapist and rare. His eye to detail and willingness and techniques to draw out the very best in Noah was indeed inspiring. Yet, sadly a therapist that didn't do home visits and we didn't have the ability to make the drive to him weekly. He was patient, kind and understanding and even willing to come to the home multiple times to get the evaluation completed even when Noah fell critically ill last April and was out of commission with all therapies for three weeks. He worked timely, his correspondence and communication with me was excellent and it was what any parent could have hoped for.
We were put on a wait list of sorts for Noah's newly assigned therapist to complete school and move to Colorado. I was cautiously optimistic. I know that freshly graduated speech therapists can be either a blessing or a curse. Sometimes they're so motivated to learn they succeed and even do dances around their well-seasoned co-workers, and sometimes they fall flat on going the distance and really learning their craft well. I started to experience frustrations with the lack of ability to program and learn Noah's new device. Which was causing me to download all of Noah's needs, learn the system on my own, and expect very little troubleshooting help or assistance from Noah's speech therapist. Of course there were other little difficulties too, like the therapist repeatedly holding Noah's eye lids open when he felt that Noah was being lazy or tired or tickling him. Something that you absolutely do not want to do to a child like Noah who has a severe sensory processing disorder.
The agency's response of Noah's therapists lack of programming skills and knowledge continued to be reaching out to the manufacturer of the device instead for tips. Noah's had his new device since July of 2016, yet still doesn't have any functioning mount for his wheelchair. The agency attempted to make him one out of spare parts that turned out to be neither safe or secure for Noah or his device. It could easily tip over and hit the ground if you so much breathed on it. I asked the agency to help me troubleshoot with finding a workable mount - knowing that I would have to fully fund it out of pocket because of Medicaid's low reimbursement rate - but there were no suggestions or options presented. So I'd spend nights after Noah went to bed into the early hours of the morning researching mounting options on the Internet looking at pictures and specifications to find viable options because I couldn't light Noah's speech therapist or agency to assist me. I asked for a trial of a couple products that I felt might be a good mounting match, only for the agency to deflect responsibility onto Noah's DME who has no experience or contract with mounting agencies. After two weeks time I hadn't heard back from anyone, so I coordinated trials on my own within 2 hours time.
There is nothing worse than feeling like you're doing a therapists job and not getting paid for it. I'll have to pay shipping costs both ways on both devices, submit a credit card to secure a deposit of sorts - and fill out applications on my own. And I am sure the therapy center simply didn't want to incur the costs of trials for a client thereby trying to push responsibilities back onto Noah's DME instead.
Yesterday, I outlined all these difficulties with the hopes that the agency would step up and say yeah we've kind of failed a bit and dropped the ball and we're willing to see what we can do better or how to make this better for you and Noah. Yet, today the response email was we're dumping you as a client, here is a list of companies you can check out instead, and by the way we want our parts back that we lent you for Noah's "Frankenstein" mount. I'm disappointed of course that was the response and the feelings of the agency, and I know that there are lots of other parents experiencing similar difficulties with the same agency because we all talk to each other - so these difficulties are not isolated to just Noah. I would have hoped that they took my concerns seriously and didn't take a dismissive tone or attitude towards it all.
Parents like me tend to stay in bad situations because we feel like we don't have a lot of options. There are not many speech therapists experienced in AAC devices - and as such we're often willing to assume a bad therapist over no therapist. But we're doing such disservice to our children when we do that - and to ourselves. I deserve to have the kind of genuine help that I need, my child needs support and deserves to not be without a speech mount for now going on seven months because I can't light anyone's fire to care enough to get it right. I don't deserve to have to ask for the company to come out and train me because the speech therapists are unwilling to learn the device well enough to know what they're doing.
So, Noah is Speechless - (yes, find the humor in it) because we all need a little laugh to get through the hard parts. But I'm going to pick up the pieces and find something better. I know I will - because I have faith that someone will go the distance for Noah. Someone will be his champion, someone will care enough to be beyond awesome. And so I wait for that next door to open. But while I do, I take solace in the strong roots that continue to drive down even deeper.
"From little seeds grow mighty trees."
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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