Getting the Hang of Medical Appointments

This week it was time for the dreaded visit to the doctor so that V could be cleared for anesthesia. Next week she has a dental cleaning scheduled at Shady Grove Hospital, and any necessary scaling or restoration work that they find necessary. Last year, this medical appointment was a disaster because her new doctor and his staff did not understand how badly things can go when V has to wait in an office for a long time.

This year, I called the doctor's office before leaving our house for the appointment, to make sure that the doctor was running on schedule. Good thing that I called. He was not even in the office at 15 minutes prior to our appointment and still had 2 patients waiting ahead of us to see him. The nurse agreed to call me when he finished with the first patient, and we agreed that we would wait at home for that call, and only leave home after we heard from her. An hour later she called us, we left home, and when we arrived at the office the doctor was ready to see us immediately. V was reasonably cooperative during the exam and transitions in and out of the office. I had time to talk with the doctor about her health and to get a blood work order as part of an annual physical exam. This was a dramatic improvement over our experience last year.

We have started calling the psychiatrist office ahead of the appointment to determine if she is running on time as well, and then adjusting our arrival at the office accordingly to avoid the wait in the office or sitting in the car for a lengthy period of time. This is reducing the stress and anxiety related to these appointments for us all.

Yesterday, I spoke to the nurse at the hospital regarding the procedure that is scheduled for Monday morning. She was very understanding about the difficulty of waiting in a waiting room, and suggested that we arrive an hour before the procedure instead of the standard 2 hours. Then, I will go inside and register her while she waits in the car with my husband. When they are ready to take her back to a room, then we will bring her inside the hospital and avoid time sitting in the waiting area.

As the Beatles sing, "It's getting better all the time." So true.

Is There Justification for Denying Access?

When V was in school, I was surprised by some of the things that she was denied access to. I say to you, as advocates for your child, PUSH!

Push for an explanation that satisfies you, and then, when you get one, work to find a way that access can work. Ask the question, "What, other than my child, has to change to make access possible?" "What steps can we take to make this happen?"

At one point, I was told that V could not have access to a computer at school because she would break the equipment when she became agitated. Well, she had never broken any computer equipment, including the equipment that she had access to at home. The excuse was mere supposition. With supervision, which should not have been a problem since a 1:1 aide was part of her IEP, there really should have been little risk. Years later, when we wanted to put a computer in her room, and knew that she would have to be alone with it at times, we had a computer station designed that had a plexiglass door in front of the monitor, and locking keyboard drawer that solved the problem. I made the special education department of MCPS at the board of Ed aware of the design and the company that could duplicate it for them, so that they would not have to deny another special needs student access to technology. As far as I know, they have not taken advantage of the desk design, but have found the money to put electronic signs in front of all the local schools. Now, which expense would have had more impact on student learning?
It is your tax money that is being spent, and you have a right to have a say in how it is spent. Speak up!
I found out about the Dynavox voice output device years ago (1996 to be exact). I thought it could open up all kinds of possibilities for V in the realm of communication. Insurance would pay for it if a Speech and Language pathologist would write a report that indicated medical need. Someone who can't communicate if they are in pain, hot, cold, or tired is certainly at medical risk without a means to communicate with doctors and family. Instead of supporting the goal and working toward it, I was told that V was not ready for such a sophisticated device and therefore no recommendation would be written for the insurance. She was 12 or 13 then, and in the rest of her years of schooling, she was never any closer to ready for such a sophisticated device, and never receptive to speech services. Only since the end of school have we seen steady and significant progress toward those goals. Was it a lack of belief in her ability to make progress that kept school personnel from supporting access to technology and working to get her ready to benefit from it? Did they just not believe that she had enough potential to make the investment of money and time worthwhile? Was there a lack of creativity and motivation to think "outside the box" and look for a different delivery model of services that she would be receptive to?
In retrospect, even though I was always told that I was a strong advocate for V, "a poster parent" as one administrator called me, I wish I had not taken no for an answer, that I had pushed harder and perhaps V would have lost fewer years of progress.

Where does the negative thinking and dismissive attitude toward our children come from? Don't accept it.
* incidentally, our speech therapist works part time for MCPS, and she is awesome!

Fitness for Health: 2nd Visit

Just because Nyle (V's O.T.) and I were impressed by the facility and founder of Fitness for Health, didn't mean that V would feel the same. The only way to decide if the center would be a good fit for V was to take her there to work on the equipment with the FFH trainer that would be working with her as a client. Today we did that. I was hoping that Nyle could join us, but her schedule didn't allow her to be present again, but since we had left her evaluation with Marc when we went for the first visit together, they were prepared.
The timing of the visit was not ideal because they had several other children there who were very active, loud, and dealing with emotions... all issues that could have caused behavioral issues with V. She handled the sensory load pretty well. First, she saw a bag that someone had left on the trampoline, grabbed it and looked inside and found food. Uh Oh. Food obsession triggered. It was tricky getting it away and out of site, and required that one of her own snacks be retrieved from the car and brought in for her. Time was lost to snacking. Now they know not to have food laying around when she comes again. We went first to the the larger of the two rooms that use a black light and floor lights to make equipment glow in the dark. V surprised us all by kicking around the glowing soccer ball. I didn't know she could or would kick a ball, so that was good to see. The balloon caused a little sensory overload and V needed to sit down and collect herself before continuing. Then we went into the main room with the rock wall and 30 foot long trampoline. She walked with me over several long, 10 inch thick floor mats that made for a nice, unsteady surface. Good. Walking on unstable surfaces is one of her OT tasks to work on her balance. She walked on the trampoline. Good again. We tried out the equipment that required her to tap on various lights to put them out and involved bending, stretching across, and stretching up, along with visual and auditory tracking. At first we motivated her to tap the lights with stickers, but soon she became so engaged with the activity and the verbal praise that everyone was giving her, that she forgot about the stickers and only cared about finding and tapping the lights. For a first visit, she engaged quickly in each activity presented and experienced fun and success. She was in no hurry when it was time to go, and turned back around to the tire swing and crawled into it, hanging on it, smiling happily.
My decision was made. I can see that she can make progress on her goals at this place, where the staff are patient, skilled and understanding, the activities are motivating and fun. The staff agreed that she could benefit from the activities that they have to offer. Now I have to write it into the plan of care and budget for the new fiscal year, and justify it well with the O.T. evaluation and goals. I am crossing my fingers that it will be approved.

Good News for Asperger's and High-Functioning Autism or PDD

One of my Google Alerts about the latest research including an interesting article about a summer camp for youngsters that are on the autism spectrum, but high-functioning. Although, this description does not apply to V, there are many out there that might find some hope for improved social skills from reading about this program.
To get the whole story, copy and paste this URL :
http://www.canisius.edu/newsevents/display_story.asp?iNewsID=6402&strBack=default.asp

Bubble Blowing Happiness

Last night I came home and checked in on V and her staff. I found Aisha holding out the wand of bubble liquid to V's face and V was blowing with all her might and then reaching out to catch the bubbles. Aisha was laughing and praising V, and I joined in with clapping and approval. They were happy and having fun and I was happy too. First because Aisha was repeating an activity that she had observed during an OT session and was reinforcing the work that she knew Valerie needed, and second because V was doing so well and enjoying herself.
I couldn't wait to share my observation with our OT, and Nyle wrote back,
"You know, when I first started working with V*****, she couldn't blow a bubble because her oral-motor muscles were too weak and she couldn't calibrate her blowing to get enough force. This activity is very good for building up the muscles she needs to form words more clearly. It's also good for eye tracking and convergence, which helps to integrate the brain."
What a little thing, so insignificant to most children and parents, but important to us because it shows progress toward more important skills. Staff reinforcing what they observe specialists doing is what I have wanted to see and I am seeing it, more than ever, now.

Real Feelings

It occurred to me that someone reading this might think that I am always hopeful and optimistic about V, our life and her future. Most of the time I just think that I wouldn't make anyone's life any easier by whining about the way that I hoped or wished things would be or should be. Most of the time I accept and live in the reality of our situation, counting my blessings and recognizing that it is hard to raise a child without any disabilities too, just in a different way. I have not had that pleasure myself, and I tried to share in it vicariously by teaching elementary school for a few years. It's not the same. Those children move on with their lives and most forget you were ever a part of their day to day routines (I think).
Like other parents who are told that their child is not developing normally, I got scared and sad, and grieved for the lost path that I thought we were going to take. I left the world of "This is what happens next in your child's development" and joined the world of "Who knows what will happen next, or when it will happen". I might as well have thrown away the child development book that I studied in college that explained what is typical at 2 years, 3 years, etc. There was no book and no person who could provide answers to questions like, "When will she talk?" "When will she learn to dress herself?" and "When will she read?" My only option was to love her, give her what help I could, and wait to see what would happen. Over time I learned to be her voice and to advocate for her with teachers, therapists and doctors. Sometimes I became really angry and frustrated with them all.
I tried to join a parent support group when V was very young, but came home from each meeting with a headache from the stress I experienced in those meetings. They were years ahead of us in their experiences and I could not relate to the things they were dealing with, but it frightened me that I might someday be able to. So, at that point, I determined that our lives were not going to revolve around V's disability. We were going to have lives that were as normal as possible, and I would do what I needed to do, but not immerse myself in the subject of what was wrong or missing in our lives. That was how I functioned without becoming overwhelmed by how different our lives were becoming from that of my friends. It was lonely and isolating being the only person I knew who was dealing with our particular kinds of troubles. As a single mother, I had no partner to share the ups and downs with. When V was very little, she was included in birthday parties that my friends with normal children held, but as she grew the invitations stopped coming. There were no invitations to come play and no little friends coming over to play with V, just the two of us at home. The children of my friends had grown and moved on to socialize with other children at their own developmental level. V was left behind, and me along with her. I continued to get together with other adults on my own when V spent the weekend with her dad, or I had a sitter, but the strong chance that V would have a meltdown and become aggressive or destructive, kept her from being part of those activities. Peers, outside of school, were non-existent. I could not imagine what it would be like to grow up without friends the way that she had to. I have always recognized that no matter how hard it has been for me to care for her at times, it has always been harder to live in her head 24/7/365. At least I got breaks to live a normal life, to escape stress and frustration. There have been times I have thought that if I had a chance to trade places with her, to give her a chance to live in a body that works as it should while I exist in the one that she has to, I would gladly make that trade so that she could have a chance to have friends, boyfriends, an education, a husband, children, a job, grandchildren, travel, sports....everything she has to miss out on because her body won't do what it was supposed to. I have stared into her eyes, looking for the loving, intelligent soul that I believe is trapped inside and I have wondered if we will finally get to have a real conversation when we get to heaven. I hope so. It would be tragic to never have that chance. I love her and I get to say it every day. She loves me, but never gets to tell me so, so she gives me smiles, hugs and kisses instead.
I try to keep an emotional distance from what we have both lost so that I can hold myself together enough to act on her behalf. If I talk about it too much, my throat gets tight and my body trembles like I am cold and need a sweater.
I try to be okay with the life that V has, but that doesn't mean that I don't miss what it should have been. I should have been sitting at her high school and college graduation while she walked proudly across the stage for her diploma (not certificate), and I should have been taking her prom and homecoming pictures after helping her shop for a dress. I should have congratulated her on her first job and I should be looking forward to her wedding and her children. It's not fair and we have both been robbed of what should have been.
So, if you read my posts and think that you are alone feeling sad, isolated, angry, helpless or frustrated, you are not alone at all. I choose to focus on those things that I can control to maintain my own mental health and to be the best mom I can be, and I look away from all those negative feelings most of the time. But only MOST of the time.

Fitness For Health

In Rockville, Maryland, there is a fitness center unlike any I have seen or heard of. This is a place that has staff who have experience working with the special needs population and have worked collaboratively with special education teachers and occupational therapists.
Nyle, V's OT, and I visited this place today, to determine if it would be an appropriate place to work on her gross motor skills, balance, posture and motor planning. They are equipped to do these things and much more. Marc Sickel, founder of Fitness for Health, showed us around and discussed the philosophy of the program. Nyle thought it was the most state-of-the-art facility that she had seen, and better equipped than any occupational therapy clinic.
An article by Jessica Clancy that is included in the client packet we were given says this place is "customizing programs for kids who are all over the spectrum when it comes to motor skills and cognitive development." She goes on to say that clients with ADD, autism, and an array of genetic disorders have been helped here. Non-disabled clients are served here as well because the facility and staff make fitness and learning fun. Some of these kids participate in "learning through movement" to address academic skills as part of a fitness/play activity.
We will take V to see this facility in the next week or two and see how she responds to the environment and the instructor.
It is a very impressive place.
To read more about this and watch news video clips showing the facility, visit the website at FitnessforHealth.org