Wednesday, February 8, 2012

Finding Answers!!!

Many of you have noticed that my blog posting has dropped off...I've been kinda quiet. It isn't from lack of events or not enough happening to post about. We all know Sam would never allow me to get bored. It was something different.

Did you ever have someone ask you a question or make a statement...and for some reason that question stuck in your head and you couldn't let go of it? You find yourself thinking about what they said and you wonder why you keep thinking about it. I always consider those messages heaven sent. Someone is trying to tell me something or something struck a nerve and it is an area I need to work on or need to focus some attention on.

Every morning I pray that God would be with me and guide me. Well, let's just say there's been a lot of guidance occurring lately. It all started a few weeks back when we found out that Sam's hip had not shown any regrowth and we repeated Sam's bloodwork. The results we got back from the bloodwork was encouraging. Here in an excerpt from my letter to Sam's doctors.

The major changes in the bloodwork to note are:

Test

Sam’s level 11/1/11

Range

Sam’s level 1/13/12

Notes

IgG

685

508-1080

739

IgA

44

52-232

48

IgM

18

36-226

34

Ionized Calcium

1.13

4.5-5.3

4.80

Magnesium

1.8-3.0

2.1

Vitamin D3

32

30-100

58

Original level 18

The changes we have noted are as follows:

Sam is healthy, no illness since his hospitalization for double pneumonia even though his brother and sister have both been sick.

Sam’s eyes are no longer constantly dilated. Both eyes are working properly.

Sam’s posterior rash is showing marked improvement.

Sam’s bowel movements have increased to 3 times per day, formed and light in color.

Sam is able to tolerate a full dose of Nutrivene without any adverse affects.

Sam’s recovery from his course of intravenous antibiotics which would normally be around 6 months to get his system back on track which includes reduction in yeast and excessive stimming is already on track.

Sam no longer is constantly seeking food and has lost 6 lbs.

Sam is able to pull out more words, not just scripted speech.

Sam still struggles with listening, processing and responding unless physically cued.

Sam has shown better intuitive play skills.

Stimming had picked up in the beginning (including vision play, repetitive actions (tapping, arranging, OCD behavior), constant “Mom” request, excessive self talk or playing movie/cartoon episodes out), and has now reduced to a lower level but he still has a great deal of verbal stims. Basically now if Sam is bored he will stim.

Sam is showing better ROM in his left hip. He is now sitting Indian style in his wheelchair, can rotate his hip to go further underwater and is more cooperative in pool therapy depending upon the day and his mood.

Sam is still asking for the wheelchair for distances further than his mobility within the home. He is no longer putting himself in traction but still needs to change position on a regular basis. Sitting for longer periods such as a trip to the Zoo will cause him to lay down more often when we return. I have seen an increase in crawling sometimes from one room to another and he still shows marked discomfort in a standing position.

I would love to say Sam is easier to work with, but Sam is Sam and he has a strong personality (must be a family trait), overall I think he feels better and his frustration level and tolerance of chores, home program and therapy has improved.

Sam continues to have speech therapy (2x per week), aqua therapy (2x per week), NACD (www.nacd.org) home program, respite care out in the community 3x per week and he will now participate in Special Olympics in swimming.

Along with this update I had sent Sam's x-rays and MRI to Dr. Dror Paley, a renowned Perthes specialist located in Miami Florida. Even though the medical records and x-rays got delayed and no one seemed to be sure if they were sent out or not...I didn't get anxious, frustrated or worried. I was calm...not something that happens often with my A type personality. Prior to the bloodtests I was ready to pack my bags and head to Miami for what I thought would be more surgery...but the bloodtests gave me hope. I wasn't disappointed or surprised when I received Dr. Paley's response:

Since the hip is well contained and well covered and since Shenton's line is reduced, the decision making at this point is based on only two factors; hip range of motion and Shenton's line. If the range of motion is good and Shenton's line remains unbroken, then no further treatment is required for now. If the hip range of motion deteriorates or if Shenton's line becomes broken indicating collapse I would use distraction.

We are okay. Now being the A type personality that I am that doesn't mean I didn't have a few further questions about bone regrowth and how long to wait nor did I stop my continuing research on hyperbaric oxygen treatment for AVN...but we are okay for now. We can relax.

I turned my focus on just enjoying Sam. I invited his cousin Eli for a weekend stay so they could spend some time together and go to the monster truck rally. They had some great air hockey matches and I loved listening to the two of them talking together. Eli said he could understand most of what Sam said and to me that in itself was a blessing and showed how far we have come. I smiled as I listened to the two of them talk at night before going to sleep. Sam calling out to "EI" and Eli always responding "Yes, Sam". In order to make it equally as fun for Eli and to accommodate Sam's schedule we also had Eli go plowing and to work with Ben.

Eli, Ben, Sam, Jeff and I all enjoyed the monster truck rally. Sister Danielle was off on a girl's weekend filled with skiing and snowmobiling in Michigan. This was a first time experience for Sam and yes...I wondered how he was going to deal with the noise.

When it was about to begin I put a head set on Sam. He immediately handed it back to me. But then the first truck started it's engine and Sam quickly turned to me and said "Mom, too loud!" I put the head set back on, he tapped it a couple of times and decided it was a good idea. No meltdown, no issue...he just removed them during the down time and asked that I put them back on whenever it got loud.

HE LOVED THE MONSTER TRUCK RALLY!!

All 3 boys wanted to stay afterwards to watch the clean up. Yep, those are my boys.

Our snowfall has been pretty non-existent this year but when it did snow Sam wanted to go outside and play. Putting snowpants, boots, mittens and a hat on sensory boy has never been something to look forward to. Add in Perthes and everything just becomes a little harder, inability to stand for any length of time which means putting on snow pants and boots is a challenge...then let's try to walk with a leg length difference, already unstable balance on crunchy uneven snow. Doesn't that sound like fun?? But this smile...

...and seeing Sam sit cross legged on a sled is definitely worth it.

I love watching the interaction between him and Buddy.

This big beautiful dog is Sam's protector and friend.

Sam and I laughed as Buddy's split personality came out. Here he thinks he's a retriever.

And here, he's playful as a poodle.

Sam did great on our walk through the woods...of course him sitting on the sled and me pulling. No need to go to the gym, I can just hang out with Sam. Between pulling him on a sled or pushing him in his wheelchair and wrestling his wheelchair in and out of my trunk I feel I have completed my workout. Whew!!

Sam often rubs his left leg when we are outside. The only thing I can think of is that his hardware reacts to the cold. As he made his way out of the snow with my help his hip needed a rest before he could venture into the house. So he laid down on the driveway for a few minutes.

It's kinda sad that something so simple like playing in the snow can cause such pain and discomfort.

In an effort to break away from the research and medical issues I even took a day to enjoy one of Danielle's volleyball tournaments.

I love watching her volleyball games and I think she is becoming a very strong player. I am proud of her making the club team and I hope to attend all of her games.

We celebrated Ben's 17th birthday. Time is just going by too fast. I still remember the little boy working on his John Deere toy tractor on the driveway...now he's working on his diesel truck or one of his many other toys.

Everything was going pretty well. I was often times too tired to stay up and write on the blog. Sam's nutritional requirements, diet, therapies, home program and medical appointments seemed to fill my day and I tried to get everything else done in between. And then came the comment that would change my thought process.

Sam and I had gone to the YMCA for his aqua therapy. As usual I sat in the chairs next to the pool with his wheelchair and watched him and his therapist Wendy in the pool. A group of adults from our community rehabilitation center for people with developmental disabilities had just left the pool area. I often watch these people wondering what they were like when they were Sam's age which of course leads me to thinking about what Sam will be like at their age and then I stop myself and remind myself to just take it one day at a time. As I was sitting watching Sam a man and lady came up to the edge of the pool, the lady asked "Are you a caretaker?" Thinking she thought I was a respite worker I quickly answered, "No, I'm Sam's mom". She raised her eyebrows and then smiled and said, "I'm a caretaker for him, my husband." Her husband smiled and waved and then they both walked away. It was one of those moments that you sat and wondered if you had answered correctly. As a mom of a special needs child we are put into many different roles: mom, nurse, therapist, teacher, friend, bodyguard...and caretaker. I wasn't sure if I was struck by the thought of wondering when you go from being a wife or mom...to just a caretaker. Not that being a caretaker isn't an important job but if we were to look at the hierarchy...I think it would rank below wife or mom. I wasn't judging this woman's response because I have long learned that I can not judge anyone unless I walk in their shoes. But something about that encounter kept bothering me. I absolutely understand the role of the caretaker. When Sam was in his body brace he required my full assistance 24/7 and I was happy to do it. I have often heard parents of children with significant medical needs refer to themselves as caretakers. As much as I tried to reason it out or let it go...it just kept coming back to me.

Then the other day Sam and I had a rough start. I wasn't sure if he had slept poorly, if his hip hurt, if he didn't feel good. Add to that the fact that my shoulder and back was sore and I woke up feeling tired not just physically, but mentally. Put the two of us together and we were a force to be reckoned with. I decided to opt out of program and head to the grocery store. As I began to wheel Sam in I began to dread the usual grocery store experience. Sam is a "meet and greet" kind of guy and will say "Hello" to everyone he sees. At this particular store he usually receives maybe 10 to 20% of positive replies. A lot of people ignore his "Hello", act like they didn't hear him (and we all know Sam has never been really quiet) or shuffle off in another direction. I felt the cloud that was following me...creeping in further. We came to the produce area and our first victim...no scratch that....disappointment...no too negative...we'll just say person came into view. Sam immediately smiled and yelled "Hello Lady". She smiled back and said "Hello, what's your name?" Sam answered, "I Sam". The lady replied "It's so nice to meet you". Sam said "Bye lady, later." She chuckled, said "Later Sam" and walked away. I wheeled Sam over to the deli and out of the blue another lady walked up and started up a conversation with Sam. I couldn't help but smile. This lady thanked me for allowing her to converse with Sam. I wanted to pinch myself...maybe I was dreaming. This continued on in every aisle. It was as if someone announced we were coming and everyone was told to be on their best behavior. By the time I got to the last aisle, I was chuckling and thinking "Wow God, you're good". In the last aisle we came across an older man we often see at the store and he never acknowledges Sam. But today he said "Hi young man" and I almost fell over. Sam was in his glory and I was again humbled.

When we got out to the car, I thanked God for giving me a much needed boost and I prayed that he continue to guide me. I also asked him to explain why I was so struck by the caregiver comment and can't seem to let go of it.

When I woke up this morning and began to go through my day with Sam...I got it. Sam and I have been working on chores and daily living skills with what I thought was a mild enthusiasm from Sam. Due to Sam's auditory processing issues I have been using visual guides to assist him. Sam didn't seem interested and protested at every chance he could. I had begun to give up, to do the chore myself or to move on to something else...but this morning I decided to see who was the stronger one. I brought out Sam's visual aid to help him collect everything needed for breakfast. This requires him to pull things out of cabinets, the refrigerator, use his step stool and place the items on the counter top. He began to protest. I stood my ground and decided to reinforce the concept. I pointed to the guide and said "Sam do or no breakfast". He got out a plate and put in on the guide and then decided to grab a bag of chips instead. I met him in the living room and grabbed the chips, returned him to the kitchen and repeated "Sam do or no food". I left and went to take my shower. I fully expected that when I came back he would be sitting in the front room watching TV having made no progress toward breakfast and I would have to walk him through it again. But much to my surprise he was sitting in the kitchen and there were items on the guide. Now it wasn't perfect but it was an excellent try. You could see the pride on his face. He had done something that mattered. We made the necessary corrections and I rewarded him by making breakfast. As I was making breakfast a few things struck me. Sam didn't make a good attempt until I left the room, I think he is used to me giving in or getting tired of waiting. My expectations are too low, he can definitely do more than what he is showing me. That's when I got the answer to my question. I am obviously a good caretaker but I don't want to be one. I want Sam to be independent but my actions have not reflected my feelings. When Sam had his surgery I became the caretaker 100% and I had too. But that setback did more than just slow down Sam's progress it made me change my thinking and alter my overall journey. Believe me, Sam is more than happy having me be the caretaker and easing the burden of teaching and helping him to become more independent. Wouldn't any of us like to have someone wait on us hand and foot...but then I see the look of pride in Sam's face when he accomplishes something on his own and I have to continue to move forward, to caregive less and challenge more. It's a difficult line with a child that now has a physical challenge along with his normal day to day challenges. I know this is the message Ellen Doman was trying to get through to me with our latest NACD program.

Jeff and I have talked about building a new home. I have asked him to consider building the one level handicap accessible ranch home we would like but also building a second smaller home for Sam. Someplace he could call his own and be completely independent and responsible for. The lot we have purchased would accommodate two homes and give Sam some space and privacy to work on his skills and abilities while allowing us to monitor his progress. I have learned that Sam often does better when he realizes that what he is doing is important and must be done and Mom is not there to do it for him. Kinda like the mantra that constantly runs through my head when I am cleaning our house "It's gotta be done and if I don't do it no one else will." The fact that I have that mantra is probably another message but I need to picture Sam saying and doing the things he needs to do to be independent. If I set that as the goal I quickly realize we have a lot of work ahead of us. Oh, who am I kidding if I have that mantra there is work to be done with all three of my children. We are starting with chores and will expand to breaking down Sam's day so that he can accomplish more on his own. Letting go and letting him do more. It's scarier than having Ben or Danielle do more, alot more worries and unknowns, but it is necessary. Sam may decide he never wants to live fully on his own and that's okay too. The skills he is learning will make him an integral part of the family he is with.

Let me share what it looks like to shadow Sam and the struggles both he and I face. Yesterday I began with the trip to the YMCA for aqua therapy something Sam does twice a week. I told Sam we were going to the pool and he needed to get ready. He looked at me and didn't move because normally I would put everything together and he would just have to walk out to the car. So I had to stop myself and think what would Sam have to do to go to the YMCA by himself. I told him he needed his YMCA bag. He found it and dropped it at my feet. Do you see the trend I've instilled now??? I asked him "What do you need for the Y?" He told me "swimsuit, towel". I said "Well, you better go get them". He did and I was thrilled to see him put them in the bag and zipper it up. He said "Okay, Mom go". I said "Hmmm, we'll need to get a locker". I was thrilled when he opened the side zipper and said "Okay, card". He watched me get my shoes and jacket and followed suit without any prompting. This is better! As we walked out to the garage he looked at his wheelchair and said "Mom, stop, wheelchair". I played dumb and said "Yep, that's a wheelchair". Sam said, "Mom, stop, wheelchair trunk". I told him "You're right, we'll need to put the wheelchair in the trunk". Sam gets into the car on his own and puts on his seatbelt and of course reminds me to put mine on too. We drove to the YMCA and Sam told me to get the wheel chair. This I have to do so I jump out of the car. Sam always locks his door and waits for me to say "Open please". He smiles and opens the door. I wheel him in since he does not have the strength yet to wheel himself but we work on a small section of self propelled wheeling and then have Sam press the handicap door openers. He presented them with his card with a wonderful "Hello Lady" and even answered when they asked "How are you today?" and got his key. We headed to the family locker room and Sam began taking off his clothes and then waited for me to get out his swimsuit. I went to the bathroom and took time washing my hands so he decided to unzip his bag and get things out himself. He put on his swimsuit and placed the towel on his chair. His clothes remained on the changing platform. I pointed to them with a questioning look and he said "Put in bag". I said "You should do that" and he did. I had to tell him to zipper the bag and then he hopped into his wheelchair. I pointed to the key and he grabbed it. We went out to the lockerroom and more tests for both Mom and Sam appeared. Sam had the key but didn't look to see what number he had and proceeded to try to put the key in the nearest locker which of course caused instant frustration. Yep it would have been easy to grab the key and put it in the right one but than I'm not shadowing him in a way that he will learn what to do in that situation. I told him to stop and look at the key. He of course looked at the back of the key and when I turned it over he said "5" even though the number was "15". I had him try locker 5 which didn't work and told him to look at the number again. After whining he got to the number 15 but still proceeded to locker 13 because that was the closest. I said "Sam, look for locker 15". Yep the frustration was beginning to show for both of us. He finally realized that locker 15 was next to 13 and attempted to put the key in upside down. Deep breath and space as I watched him talk himself through turning the key around and trying again. Finally the locker opened and he put his bag inside. He jumped back in his wheelchair and I waited and finally pointed to the locker. He said "oh yeah close, get key". He handed me the key but what I couldn't help but notice is the look of satisfaction on his face. We repeated everything when we left the pool and I was pleasantly surprised when Sam wanted to help me load the wheelchair and bag in the trunk instead of just jumping in and waiting for me.

Is it time consuming? Yes. Does it test my patience? Yes. Does it require me to continually think about what we are doing? Yes. Does Sam becoming more independent encourage me and scare the crap out of me at the same time, YES! But is it all worth it when I see that look of satisfaction, of a job well done on Sam's face? YES, YES, YES!!

A typical parent can worry about independence but a parent of a special needs child has so many more unknowns. The locker situation would not have frustrated the typical 11 year old, they would have figured it out on their own. Our next step would be to have Sam go in the room by himself, then to go into the locker room by himself and finally have him go to the men's locker room by himself. Doesn't seem really scary to the average parent of a teenager, but in order to make a proper comparison you have to think about doing the same thing with your 3-5 year old child. Letting them go into a room or men's locker room unattended, unsupervised. Now what thoughts come to your mind? Do you feel the anxiety? Do you begin to understand why this process is so difficult for us as parents?

My new mantra "Expect more, do less, patience and persistence will prevail." Add in Sam's mantra "We did it" and how can we go wrong?? It is never too early to start shadowing and thinking about how to teach those things that most of us take for granted. Each day Sam will challenge me to walk a tightrope I often feel has no safety net. How much can I challenge and expect him to do but keep in mind his health and medical issues. How do I help him reach his full potential and yet keep him safe or am I really working on both of those issues at the same time??? Today I pray for courage!! Courage is defined as that quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.

Any intelligent fool can make things bigger and more complex... It takes a touch of genius - and a lot of courage to move in the opposite direction.
Albert Einstein


You cannot build character and courage by taking away a man's initiative and independence.
Abraham Lincoln

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
Winston Churchill


10 comments:

  1. Thank you for your post. It was good for me to read the good news about Sam and you. You are such a wonderful mom to Sam.

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    1. Thank you Mary Jo! Sam puts many things into perspective for me and that's what I try to write about.

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  2. This is an inspiration! Thank you! Great job, both of you!!!

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    1. Thank you Justine. I enjoyed reading your blog also!! Love all the pictures!!

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  3. Palak KrishnamurthyFebruary 10, 2012 at 4:11 AM

    You are so inspiring. I don't follow too many blogs but yours is so inspirational. And Sam looks so cute, i want to hug him

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    1. Palak, Thank you for following my blog. Sam sends a hug right back at ya!!

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  4. Sue, I confess that I'm exhausted by just READING your description of your trip with him to the gym. You're amazing!

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    1. Jennie, I really want to share what our day to day lives are like as you do in your blog too. Our guys are amazing and they inspire us and challenge us all at the same time.

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  5. It was great to hear how well Sam is doing and I loved the quotes you gave at the end about courage.
    Question for you....my son Brian who is also 11 and has DS is in the fifth grade. He has behavior issues at times at school...mostly with swearing, spitting, or trying to expose his private area. Any words of wisdom for me? He knows better not to do those things but for whatever reasons, he does them anyway.
    As others have said, your blogs are inspirational!!

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    1. Well, not knowing Brian it's hard to say but I have always felt Sam's actions speak louder than words. Maybe Brian is trying to get someone's attention or he feels that this is the only way he can express himself. Maybe he feels he is being ignored but he knows this will get everyone's attention. I would feel like something is not right in his world that he feels the need to express himself in this way. I would ask the school to give you more information on when these things happen, what happens before and how is it handled? What are the other children's reactions? I have always relied on the wisdom of Terri Couwenhoven and her book Teaching Children with Down Syndrome About Their Bodies, Boundaries, and Sexuality. She goes through teaching public and private issues on sexuality. It is a must have book in my mind. Hope this helps.

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