My Momma Said There'd Be Days Like This!

It might be more appropriate to say "Weeks like this". Winter in Wisconsin can be a beautiful time...

...but it is also a time of sickness, viruses, sinus issues and let's add in hip pain. It appears that our changing weather fronts are causing havoc with Sam's hip. We were in an upswing with more mobility, no traction and improved stability when walking. I quickly thought Sam's new supplements were finally heading us down the right track and they still may be but Sam's hip is still causing him issues. In the last couple of weeks Sam is doing more crawling, less walking, more time spent in the recliner, his frustration level is up and he is whining. Here is Sam today putting himself in traction for the 2nd time today.

Now add two teenagers with sinus, colds and unknown viruses and we have a recipe for disaster. I am also prone to sinus and migraine issues in the winter so we all get to commiserate together. One big happy, err...whining family of pain and general unhappiness. Oh joy! Ben is going in to the doctor today for a possible ear/sinus infection. Danielle will be starting rehab for her knee injury from volleyball (great more therapy sessions in a week). I continue to rub Sam in with oils, diffuse them into the air and struggle to get him focused on learning something...anything...even just a daily life skill or two.

Our current focus has been on something near and dear to Sam's heart....eating! My goal is to get Sam making meals for himself. It seemed like such an obvious and simple goal. We all eat, we require food and eating is one of Sam's favorite things to do. Yep...it seemed easy...until I tried teaching him how to make breakfast. Sam struggles with auditory processing...let me explain that in laymen terms. Sam hears but does not listen and comprehend well, he often tunes people out when they talk because it is too difficult to follow. I kinda picture Sam's processing like the old Charlie Brown movies where the teacher would talk and all we would hear is "Wah wah wah wah wah". Sam tends to pick up on the first and the last word or two of a sentence. When people ask Sam "How are you?" he will often say "11 years old" thinking they asked "How old are you?" If they have that confused look he will then quickly say "I'm good" and smile. Sam struggles to follow auditory directions. Sam has both a hearing and processing issue so something we take for granted, understanding the spoken word...eludes him. Now that doesn't mean that Sam can't follow directions or understand concepts it just means it's a ton of work for him to hear, listen and comprehend and it is imperative to work with him in a way that works and makes sense to him. It's equally imperative to be patient with him, give him time, allow him to express himself and work with him in order to hold a conversation. One of my favorite things about Sam is when we are working through a conversation and I'm answering appropriately which means I've understood and interpreted what Sam has said...the look on his face and how his eyes light up is priceless. Now did you read that last line? That thought process is what keeps me talking and communicating with Sam each day. It is work to converse with Sam. You have to be patient, interested, listen at a level that most people will never develop. You have to be present, in the moment, committed and you have to enjoy the experience. It is a lot to ask of a person...but isn't that what we are asking of Sam and even more??? We are asking him to work through his hearing issues, pick up what he can, process it and figure out the missing pieces, pull out an appropriate answer, manipulate an articulation system that has some broken pieces and respond. Ask an adult who has suffered a stroke how frustrating it is to communicate. That frustration can often lead to depression or anger but the part that amazes me about Sam is no matter how frustrating the process he continues to work with me. Teaching Sam to make a breakfast is a challenging and patience building experience. Let me share the journey with you.

Sam's breakfast usually consists of 2 eggs made in coconut oil, 2 slices of gluten free bread with ghee butter and organic cinnamon and a glass of apple cider or fresh squeezed orange juice. The first part of working with Sam is to show him the expectation so I demonstrate making the breakfast. I show him where each of the items is stored and I walk through making the breakfast. For most neurotypical kids this step would be enough to complete the task. Not so for Sam. We began with locating and getting the items he needed for his breakfast. I first tried to walk him through step by step auditorally which failed epically within the first couple of instructions. He got frustrated, sat on the floor and refused to even acknowledge that my lips were moving. Okay...regroup...I'll write out the instructions because Sam's reading is stronger than his ability to follow auditory instructions. So I wrote out the instructions and Sam struggled with processing the whole sentence and finding where he left off so he kept trying to start from the beginning each time. Frustration x 2 = Mom and Sam looking at each other hopelessly. Okay...regroup...what if I do a visual guide. Walah...a visual guide to help direct Sam on what he needs for breakfast.

I showed Sam how to use the guide and he really enjoyed watching me but when it came his time to follow the guide...not so much enjoyment. He got a plate and called it a day.

Whew time to rethink. I know Sam wants to eat, I know he can follow a visual guide...yep...I'm pretty sure this is behavior. Time to switch over to my behavior analyst hat. This does require walking around the kitchen and the hip is a wee bit painful lately so we will place a chair centrally located in the kitchen for a rest stop. Sam was happy to just sit on the chair and say "NO" when asked to get out his breakfast items. Grrrrr...I know you can do this Sam. It's time to pull out the big guns. I say "Sam, you do or no breakfast." Said with an authoritative"I mean business" tone. Sam understanding his lack of doing means no food is starting to get his attention but he is still whining and refusing to proceed.

Sometimes with Sam, the best thing is to walk away and let him think about it. I again using my best "I mean business" tone say "Sam, you do or no breakfast." "I'm taking my shower" "Sam do it". I walk away feeling somewhat deflated, teaching when it doesn't work is very deflating to the ego. I'm not asking him to prepare a gourmet breakfast for the two of us and have it on China by the time I finish my shower. I just want him to pull out the supplies needed to make breakfast. As I took my shower I tried to keep positive thoughts that he was doing it but if I'm being honest I kinda figured I'd be regrouping again.

I finished my shower, got dressed and headed to the kitchen. I was happily surprised to see Sam sitting in a kitchen chair with a smile on his face. This is what greeted me on the guide.

Okay, not perfect, but it was an attempt and I rewarded him with a high 5. We then looked at the guide and I was able to quickly walk him through the corrections that needed to be made. I gave him the benefit of the doubt on the bread because his bread only had two pieces left and it was under the bread he pulled out. The pan he chose was conveniently sitting on the counter so he didn't stress himself in getting the right pan out of the cabinet. The salad dressing I believe was Sam's attempt at humor because he couldn't wait until I asked him about that item. He smiled and even laughed a little when I asked if we use salad dressing for breakfast. He quickly told me "cinnamon" and got it out. The items missed were quickly found and placed on the guide. He did it and the look of pride on his face was hard to miss. The next day it was easier and each day it has gotten easier except when the hip is hurting too much.

The next step is to show him how to make breakfast. To most of us it's pretty simple, but take a moment and break the steps down to single instructions?? Yep, are you feeling more challenge and fun is about to befall us. My first instruction was regarding the toaster. Sam was happy to get the toaster out and plug it in. I was encouraged, even feeling a little confident that this was going to be the easy part.

And then it happened.

I asked him to get two pieces of bread and put them in the toaster. A simple instruction unless you struggle with fine motor skills and those two little pieces of bread are being held hostage by of all things, a twist tie. The twist tie is a seemingly harmless invention created in 1939 by T&T Industries unless you are Sam Mayer and it is the obstacle that stands between you and those two pieces of yummy bread. The twist tie was the end of the cooperation. I tried to show Sam how to untwist the tie but he wanted nothing to do with it. My mind began to figure out a compromise. I could put his bread in a ziplock bag...but then...I pictured Sam as an adult at the grocery store unable to buy anything that had a dreaded twist tie. Damn you, twist tie! You won't win this battle. To work on the twist tie I would bag some of Sam's favorite snacks and have him master the twist tie. But Sam is no dumb bunny...he simply ripped the plastic and left the twist tie intact. Hmmm...I found some wire ribbon, kind of like a big twist tie and I wrapped it around his Ipad. He tried to pull it off but I made sure it was pressing into the rubber cover and then I saw the thought process occur. He was replaying my instructions, "Gwab tie and twit". In my mind I'm pleading with the powers to be to have him "twit" in the right direction. And it happened, he got it and again the look of pride and "I can do it" knowledge was upon him.

The next morning he grabbed that bread with gusto and with the words "Gwab tie and twit" it was opened, the bread was in the toaster and he pressed the button down without me saying a word. I was so proud of him. Another seemingly simple instruction accomplished. Our next step will be to remove the hot toast and butter it. And he'll do it. The bread may be in pieces the first couple of times but with patience, persistence and practice that skill will be learned too. I'm still trying to wrap my mind around cracking the egg, putting it into the pan, turning on the burner and flipping the egg with the spatula. Yikes!! What I want to demonstrate is the technique of breaking it down into doable steps and what I want to convey is the courage and encouragement to take those steps. Is it work?? Yeah...but someday when I come over to have breakfast with Sam that he prepared for us at his house...I will smile!!! At any point I could choose to give up, to take the simple way out and just continue to make Sam his breakfast. But Sam is teaching me to appreciate the small steps, to realize and problem solve the things that could defeat us and to keep moving forward.

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

Wrapped Up In My Thoughts For Valentines Day!

As Sam continues his rehab from hip surgery I find myself at a place where I can think past one step at a time or one day at a time. We have managed to get through the surgery, we have figured out the daily process of caring for Sam and now my mind is daring me to think of the future. This is a very slippery slope for so many reasons.

On Sam's 9th birthday I got really brave and I gathered family together to help create a vision or path for Sam's future. To see this path go to the right side of my blog and click on Path Planning for Sam's Future. We brainstormed, we voiced our concerns and worries, we shared our thoughts and we jumped into the process of dreaming and planning for Sam. That in itself is a huge step...because when you give birth to a child with special needs or your child suffers a life changing illness or injury your dreams for them are often shattered. Your life takes a drastic turn and you feel like the weight of the world has been dropped on you. And it is not just your dreams for your child that change. Your life has been forever changed.

I am thankful that the Lord has always helped me view my life in the "glass half full" scenario. When people have asked me in the past "Do you worry about Sam's future?" My explanation has always been that I take life "one day at a time" and that worry is a waste of time. Although Ben and Danielle do not face the medical, physical and cognitive challenges that Sam has I still don't know what their futures will be like either. Life happens and as the Lord has demonstrated to me in many different ways...I'm not in control. I do realize that planning/preparation/time are all areas that significantly increase in scope when thinking about Sam's future versus Ben's or Danielle's. But that isn't the part that has me tied up in knots.

The part that has me tied up in knots are all the decisions I have to make for Sam and how do I know if I'm making the right ones. I have always been of the mindset that I will be able to figure out things for Sam through his life experiences, much the same way you would do with any child. You give them the experience of trying a sport or taking karate and if they like it you continue to pursue it. If they hate it or dread going you try something else, but you keep on trying until you find something they like to do or a way they can do it and feel good about it allowing them to feel good about themselves or what they have accomplished. I have never been the type of parent to make my child do something if they hated it because I thought they should do it. Now don't get me wrong that doesn't mean I haven't had them try things that they did not initially show interest in. I like to encourage, even push a little, okay sometimes a lot but I rarely demand. I try the best that I can to read my children, understand the struggles they face and assist them with coming up with strategies for success but it is so much more difficult when it comes to Sam. Let's just consider his recent diagnosis of hip dysplasia and Perthes. I have spent countless hours trying to explain to people that interact or work with Sam how Down syndrome, his brain injury, apraxia, his respiratory issues and hearing loss affect him. I don't know if I even understand all of that and have explained it very well. Now I can spend a few more hours trying to explain hip dysplasia and Perthes.

Jeff and I originally thought as many others did that this diagnosis requires a surgery like when you get your tonsils out and then you are good to go. But as I researched Perthes and hip dysplasia I soon came to the realization that this was going to be another life altering and life long challenge which even with a positive outcome from surgery could lead to arthritis or complete hip replacement.

There is a saying in the Perthes community that "Perthes will do what Perthes does". I take this to mean that you can address Perthes with surgery or treatment but it will continue to go through its stages of progression and nothing is definite. Every child's journey with Perthes is unique to them. Sam had surgery to address first his hip dysplasia and to put the femur back into the hip socket along with building a better socket. This better structure should allow his Perthes to go through it's stages of die off and and then absorption of the dead bone and finally regrowth. His surgeon created a pocket for the regrowth. The regrowth is a process in itself, an estimated 3 year process where his body will lay down new bone and we hope and pray it lays down enough and it grows back in a desirable shape. Hope and pray, two words that seem to define much of Sam's journey.

As I try to wrap my mind around how Perthes will continue to affect Sam I decided to go back to my best resource, the Perthes listserve. Since Sam is not able to answer questions I asked them to ask their children a series of questions to help me understand how Perthes affects them and hopefully in turn I can figure out the best way to help Sam. Here is what they told me.

1) Is your pain from Perthes a sharp pain, radiating pain, throbbing pain or please describe it the best you can? I think what struck me in their answers was that they all had pain of some type every day, no matter what stage they were in. Many talked about knee and thigh pain and didn't feel hip pain until it was a sharp shooting pain. Most of the kids very rarely complain of pain because they live with it every day. The best way to tell is a change in their gait or an increased limp.

2) Does your pain get greater with physical activity and if so what type of activity normally increases it? All of them responded that their pain is greater with physical activity. Physical activity being walking, bending and sitting/standing most of them have strict restrictions on running or jumping. Sometimes pain comes on from just sitting, no trigger, it just hurts to sit.

3) If you had to rate your pain from 1 being minimal to 10 being the worst what would you rate it? Most of them start the day with low pain which increases with activity during the day. Activity pushes the pain into the higher areas. Please remember that activity is the normal day to day motion not running a marathon or playing basketball.

4) How often do you take pain medication and for how long have you been taking it? Answers varied from every 4 to 6 hours to as needed to nothing because of a high tolerance for pain. Most have been taking it from the beginning stages of Perthes and on, some as long as 9+ years.

5) What scares you about dealing with Perthes on a day to day basis? Fear of falling, looking different, friends not understanding the pain issues, teachers/therapists/administrators not understanding Perthes and how it affects a person on a daily basis or thinking they are using the diagnosis to get out of things.

6) What helps you the most when you are experiencing pain? Medication, rest/inactivity or other. Heating pads, hot baths, traction, massage, changing activity (lay down instead of sit) (or walk instead of sitting), medication for quicker relief.

7) What problems do you run into at school because of your Perthes? Teachers, gym teachers and administration that do not understand the disease or the pain that comes with it and do not believe that the child can determine what they can or can not do at any given time. This diagnosis does not meet IEP standards so accommodations are not always easy to get. Sitting for long periods of time, sitting/standing issues, restrictions being adhered to in regard to gym class about running and jumping. Walking distance between classes or classes being on different floors requiring steps. Busing issues for wheelchair accommodation.

8) How long from diagnosis to present have you been dealing with issues related to Perthes? 1 to 9+ years.

9) Does your Perthes cause sleep issues? Most said "yes", regular activity causes discomfort when trying to sleep, heating pads are often used and the sleep cycle for both the parent and the child is disturbed.

10) What physical activity do you feel helped you the most? Swimming is the favorite followed by hippotherapy (therapy on horse back) and riding a bike.

11) How does Perthes affect you as a person? Most of the answers indicated that it had both positive and negative effects. Perthes like any disease or diagnosis affects the whole family. The children often feel bad that their friends view them as different or don't understand why they have limitations, the parents worry about the decisions made regarding the disease and hurt because their child is hurting. As I have learned from watching Sam's siblings and cousins dealing with any disease or issue usually teaches empathy, consideration, greater understanding of differences and appreciation of life's blessings.

12) How often do you use a wheelchair, crutches or walker in school? Depending on where the child is on their journey with Perthes they use a combination to help with pain management as needed, sometimes all the time if they are in pain others don't use them. Some use crutches or a wheel chair for in between classes or for any distance.

13) What school accommodations have been most helpful to you regarding your Perthes? Accessible busing, higher desk, higher lunch table, adaptive PE, floor wedge to stretch hip, leave class early so not bumped into by other students, pick a helper to assist as needed, all classes on one floor, okay to be late getting to class due to slower walk, no running or jumping activities, accommodations for movement in class or place to stretch out.

As I read through all of this it is a lot to think about especially in regards to Sam. Sam does not indicate pain. Even after surgery I had to determine through changes in his personality or other indicators (leg twitching, grimacing or traction positioning) if Sam was in pain and needed pain medication. Sam's reply if asked is always "No, all better". His tolerance for pain is off the charts...but pain does affect him just as pain affects all of us. When you have a head ache or back pain and your children are asking you to do things are you as open and accommodating as when you feel pain free? Probably not....so this complicates an already fine line we walk with Sam in figuring out what is behavior and now what is pain related behavior. In Sam's case due to his lack of solid communication behavior can indicate A) I don't want to do this B) I am frustrated because I don't know what you want me to do C) I didn't hear you or I didn't process everything you said D) You are boring the crap out of me E) I don't understand F) I want to....(fill in the blank) eat, watch TV, go outside...and this is all that I can think about (aka one track mindset) and since those options don't make it exciting enough let's add G) I'm in pain but I'm not going to tell you.

This decision making is compounded by my wanting to have Sam take the lead, show me the path or indicate some direction. Does that make sense? It is his life and although I realize as a parent I need to provide guidance so he is safe I often worry that when a child has special needs we provide too much guidance and take away their individuality similar to what happens as we care for aging parents. We begin to decide if they can drive, live alone, handle their finances and we begin to take away their identity piece by piece. With special needs children this process begins at birth and follows them through out their lives, I often feel like the definition of a helicopter mom. Being an "A type" personality really doesn't help with this control issue either.

And then I stop and think...contemplate Sam's journey before the diagnosis of Perthes. I have often wondered why Sam took such an interest in hiking, learning to swim and riding his bike this last summer. In the stage of Perthes he was in two of those activities were likely to cause him pain...and yet he persevered. Was this God's way of preparing Sam for what was to come, to help encourage him to push forward during his rehab and regain the abilities he acquired last summer? Was this God's way of letting me know that even when I don't know all the answers or I'm not even aware of certain conditions he is and he will guide Sam. I'm pretty sure that this is yet another lesson someone is desperately trying to teach me. You would think that as much as I have gone through with Sam I would catch on a lot quicker, I would have a better understanding but each twist in this journey seems to send me in a whirlwind and I struggle to maintain my balance.

A friend of mine gave me a little book called "One Minute Prayers for Women". I tend to open the book and begin reading wherever it opens to. Here is what I read:

He Hears Me

This is the confidence we have in approaching God: that if we ask anything

according to his will, he hears us.

1 John 5:14

Lord, thank You for hearing me. Your ears are open to the musings of my heart, the longings of my soul, and the questions of my mind. There is nobody else in my life who promises to hear every part of me. Even in my most insecure moments, I utter words I know will reach your heart. I dwell on worries my friends would not take seriously. I have fears that, brought up in daily conversations, would sound unreasonable. Yet You listen.

It is a gift to be vulnerable with the Creator. You are my Master, yet I can come to You with the simplest needs or concerns. As your child, I seek Your will and Your response. As my Father, You listen.

I closed the book, thanked God for listening, thanked God for my friend Lisa who gave me the book and I again begin to hope and pray.

Step 7 & 8 of the Path Process

Step 7-Planning the Next Month's Work. An overwhelming theme came through Sam's Path Process...think about small steps that move Sam toward his goals and dreams. It's funny because that seems to be an underlying theme with Sam in general , he is not known to make huge jumps in his progress or development...slow and steady has been our motto.

In this step we looked at what we will have to do, who and how. We will check into church groups, come up with small chores around the home and shop, check on volunteer opportunities at St. Johns, Sam's church and hopefully locate some social outlets within the community. We were getting tired and I felt the need to really sit down and review his dreams and goals to determine what these small steps would and should look like. This step will require further thought and a lot more definition but it was a start.


Step 8-Committing to the First Step. This step requires you to commit to doing something and exactly what that something will be. As a known procrastinator it does not surprise me that this step is not well defined. For those who know me, I can get a lot done but I tend to fly by the seat of my pants and deadlines are necessary to elicit action. So what I should have committed to is a timeline for each step defined. We talked about getting a YMCA pass for the family with family support funding, having Sam go on a sledding trip arranged by his sister and cousin, Ben taking him snowmobiling to introduce a new sport to him, working with the school to arrange short visits and putting together his medical and diet list. Over the next week this step will be revamped and dates, people and actions will be well defined.

Sooooo, what have I learned from the process??? We have a lot of work ahead of us and as we have done all along we will take small steps toward reaching the goals. I recently explained Path to a friend this way. I guess what drew me to PATH was the idea of building community around an individual with special needs. I had done community building in order to build Possibility Playground, an extension of that just made sense to me. Unlike my other children I don’t really anticipate that things are just going to happen with Sam. My experience with Sam has been that he can do things other kids do but he has to be taught, shown or presented with the situation. He doesn’t easily pick up on things on his own. I think partially because of his hearing issue, his speech issue and the Boldt/Mayer characteristics of working only on those things that really interest you. I think Sam would be a kid that would easily get lost within the school system because he can play his Down syndrome/brain injury card very well and if you are going to think or accept that he can’t do something he’s more than happy to live up to that. But with a little push, a change in how things are presented, Sam has continued to amaze me with what he can do and what he does understand. For me the biggest challenge is not if Sam can learn it but how I need to teach it to him. The Path process allows me to bring other people into the process, sometimes it takes another person or another set of eyes to figure out how to best work with Sam, it is one of the reasons why I love having Sam in NACD. Along the way I’m sure we will find those people who do not work well with Sam and those that get it and see the ability that needs to be brought out. As we find those people, we add them to the circle of people who continue to interact with Sam. I guess having a second child with a learning disability I have had the opportunity to see Ben’s path and can now think about Sam’s with a little insight. Although the diagnosis is different the underlying theme is the same. I’ve spent years helping Ben understand Dyslexia and his learning disabilities with Reading, Writing and Spelling but always reassuring him that these are challenges but they do not define his potential and together we have developed a system that works for him. He is in the general curriculum, he knows what to ask his teachers for, how he needs to take tests and what adaptive technologies he uses to complete his assignments. Along the way we have had challenging times and we have added people who work well with Ben to his circle of support. As I always say, “this isn’t the program I signed up for” but all 3 of my children have taught me so much on the very different ways they learn and they are so worth the time and effort invested. I know with Sam, I need to recruit more people to form his circles of support and the Path process seems to be a great way to get this started. I have come to the realization that I don’t think there is enough of me to really work on all the different areas of Sam’s development. I think Sam will greatly benefit from working with other people, in different situations and learning how to make that work. With both of my boys it’s scary, putting them out there in the world and wondering how people will treat and work with them. We have had situations with a teacher, a peer that have severely affected self esteem and feelings of worth which are by far the hardest to work through but strength is often gained through adversity and Ben has learned to build a shell, a shell that deflects the negative and is reinforced with daily encouragement from the people within his circles. Hopefully, through Sam's path he will do the same.

Steps 4, 5 & 6 of the Path process

Step 4 - Identifying People to Enroll. This step is where you list people, resources, networks and connections that will help Sam realize his goals.


Sam's family all jumped in. His brother, sister and cousin were top of the list wanting to help. The top of my list was Grandma, my mom, the woman who has helped me from day one, who encourages me, listens to me, cries with me and celebrates with me. She and my Dad are Sam's biggest cheerleaders and my number one source for encouragement. We listed Sam's home program NACD, we have a lot of work ahead of us and I know they will help to direct and guide me. We listed his Uncle Faron to assist with financial planning and special needs trust assistance. We listed his teacher, Special Olympics, his church, the YMCA, the state funding organizations, his boss (could be Ben or his Dad), the community, his girlfriend and his roommate. I have added others to this list that I want to work on specific areas with Sam. His Uncle Randy and Uncle Dave come to mind as two people who will help Sam realize his work goals, step by step, slow and steady.

His therapists, we have a lot of work cut out for us and I will need their expertise and help. I would also list organizations in the community we hope to expose Sam to in order to help him build his friendships.


Step 5 - Recognizing Ways to Build Strength. This step has to do with defining what knowledge does Sam need, what skills need to be developed, what relationships need to be maintained. In a nutshell, how do we keep Sam healthy and working toward his goals.

Sam's health has greatly improved with his diet changes, nutritional supplements and exercise. We will need to help guide Sam in making good food choices, remembering to take his supplements and finding someone to exercise with him or work as a trainer for him.


We still have a lot of work to do with Sam's speech. He has made wonderful progress since receiving his hearing aid but we still have a lot to accomplish. We talked about helping Sam increase his social awareness, having him do things that will help him to be respectful and respected. His faith is important and we will have to work with the church to help him become a confirmed member. We want to help him find a peer group, social outlets like 4H or the boy scouts. We need to expose him to what is out there and let him pick which ones he likes.


His home program through NACD, http://www.nacd.org/ came up through most of the steps because we have made the most progress by following their recommendations. It will be with their help that we will help Sam reach his full potential and realize his goals and dreams. I feel so blessed having them guide me and always pushing me gently to expect more.

We determined we will need to define what a job at J & H could look like for Sam and the steps that will have to be put in place to make that happen.


Step 6-Charting Action for the Next Few Months. Honestly by this step we were losing a little momentum and getting tired so we took a break and had some birthday cake. Sugar will always give you a little zing to finish off the process. This step looked at what can be accomplished in the next 3 months.



We decided we could investigate what social outlets are available for Sam. We will check on the progress of his Family Support funding. Brooke and Danielle will try to arrange a play group or take Sam on some outings.

We will begin to work with the school, slowly transitioning Sam into a school environment mainly for socialization at this point, academics will continue to be taught one on one at home.

I would add to this list signing up Sam for the Challenger baseball league and Special Olympics.

My next post will deal with the last two steps of the Path process. Throughout this process and future Path sessions these last few steps are what will continue to push us toward the goal. One step at a time, but always, always moving forward.


I will leave you with this quote from Mark Twain:

Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.

Step 2 "Sensing the Goal" & Step 3 "Now"

The second step of the Path is "Sensing the Goal". The Dream is an expression of identity and orientation. It gives direction. However, the Dream is not the pathfinder's goal. The goal helps the pathfinder realize and deepen understanding of some of the values expressed in the dream. To describe the sense of success, the pathfinder uses the thinking tool of looking backward. The pathfinder vividly and concretely imagines that success has already happened and describes the changes that have resulted as if they are real.

Because this is a first Path for Sam, he is young and we really wanted the family, friends and supporters to join in and knowing that there will be many more path sessions for Sam we visualized what life would be like for Sam at age 19. In most cases you would look out 18 months to 5 years.

At age 19 Sam is in school but may be thinking about graduating and working full time at J&H. His job is established and he is working independently. He has graduated from his home program NACD which would mean he has achieved his neurodevelopmental goals. Sam is speaking and hearing clearly, he is able to express his wants and thoughts. He understands and handles his chores on his own in preparation of living on his own. He is caring for a pet and he is a member of the YMCA and working on his health and physical fitness. He has pride in his achievements and has an award or trophy for one of his accomplishments. He is involved in his church as an usher or volunteer. Of course I can't forget his brother's goal for him, he has his drivers license. Whew...that's a lot to complete in 10 years.

And yet, when I look at this step now I would add even more. I would add his various trips and travels to places that interest him. I would talk more about his circle of friends and their activities and outings. I would talk about what sports he's now involved in and the many activities or hobbies he enjoys which will probably include new toys, like a jetski or golf cart. I would add that he is happy, he feels connected to his community and he loves and cherishes his family and extended family.

This is a great deal of information to think about and reflect on, so Step 3 has us look at what Sam's situation looks like now. A snapshot of the present.

This is what Sam's snapshot/present day situation looks like now. He is homeschooled with assistance from NACD, http://www.nacd.org/. His abilities vary from Preschool to 2nd Grade. He is happy, his health continues to be a concern but is improving. Sam's immune system is becoming stronger with his diet and additional supplementation of Vitamin D, CoQ10, C and Zinc. He is always hungry and his diet and access to food must be monitored. He is talking more and more with the addition of his hearing aid and Speak supplment, http://www.speechnutrients.com/. It will take Sam another year to become fully comfortable with his hearing aid and his new way of hearing. He has learned how to scooter utilizing his weaker right side. His endurance is improving. Due to his homeschool situation and health issues he currently has few friends. Sam is currently best described as an "observer" instead of a "doer".

This gives us our starting point and really gives you an idea of how far we have to go to reach Sam's goal. Next we are on to Step 4-Identifying People to Enroll and Step 5-Recognizing Ways to Build Strength. But for now I need to build some strength by getting some sleep. I think I have given you a lot to think about and stay tuned for the remaining steps to Sam's path. This journey is going to get exciting!!!

Step 1 "The Dream"

Step 1 in the Path Process is "The Dream". Dreaming for most of us is easy...we just do it. But the process of dreaming for Sam had me feeling a little uneasy. It's as if I was daring to dream. Dreams of friendships, employment, independence, happiness, college have all spun around in my mind many times but they never quite gained a solid footing. I couldn't quite wrap my mind around these dreams.

And yet, when I sat with my family, friends and supporters of Sam we hit on all these areas and more. As the "Mom" and Path facilitator I often had to take a step back, let go of my fears and truly dare to dream. I like the Path process because it leaves you with a visual image of the dream which is what Sam is holding. I look at this page of the process often to encourage me and keep me focused.

We dreamed about Sam living independently. Wow, that alone is a big step for me. We discussed the possibility of Sam living with another person with a physical disability but not a cognitive one and that they could help each other out therefore not feeling like a burden to anyone. We discussed Sam living with a friend in a duplex with a support person or family living next to them for a reduced rent. It was really amazing to brain storm about all the possible situations and how we could help others while at the same time helping Sam.

During this process we also talked about Sam's gifts. What does Sam bring to the picture?? I'm sure most of the people present could attest to the fact that knowing Sam has changed their life in some way. His smile, his laughter, in a very simple sense...his presence has touched so many people. No one will forget Sam singing "Jesus Loves Me" or the amazing smile he had on his face as he sang "Happy Birthday". As I looked around the room, his smile and excitement was just contagious...everyone was smiling, everyone was taking a picture of that moment, a moment of sheer joy that will be with them forever. This little boy who has overcome so much, who on a daily basis has more hurdles than you or I could imagine just emits pure joy.

We dreamed about Sam learning to care and cook for himself, driving his own jet ski, even.....(big breath here) driving his own vehicle and if not driving then arranging his own transportation. We dreamed about his involvement with his church, Special Olympics, team sports and a music group. We dreamed of his friendships, a girlfriend (yes, that was another deep breath) and his love of travelling. We dreamed about college and what that might look like. Yes, I said the word "college". We dreamed about possible employment options for Sam. My brother and I both gave examples of when we have seen Sam show pride in his accomplishments. My example was something that happened recently at the shop. My husband has his own heating and air conditioning company and Sam lives to go to work there. But I asked, what would a job look like for Sam. One weekend, a month or so ago, I stopped at the shop to check up on my boys, all 3 of them were there. Ben was working on his recyclables and Jeff and Sam were washing vehicles. Sam wanted to wash my car. While I sat in my car, Sam worked with his Dad, soaping his brush in the water pail and then lifting it to the side of my car and scrubbing. To most people that would not have been a big event, but for me...watching Sam lift this heavy brush to scrub knowing what I do about his muscle tone, his right side weakness and his sensory issues I could only smile. To watch him use his right hand to control the pressure washer as he pressed with his left hand simply amazed me, I couldn't have come up with a better PT or OT exercise if I tried. But what really grabbed my heart was the look of accomplishment on his face, the pride he took in knowing he was helping his Dad out with something that had to be done.

My brother gave the example of him picking up Sam from the shop and unloading branches from his truck. Dave also saw that look of pride as he was doing something that mattered and really that is what we hope to arrange for Sam. A job where he can feel and sense his accomplishment. My brother in law always dreamed of Sam being a caretaker for an apartment building that he and my husband would build and own. We talked about what that would all entail and the skill sets Sam would have to have. We talked about Sam possibly taking over Ben's recycling job and what skills he would have to have to do it. I think the neatest thing for me as a parent was to just talk openly and honestly and to dream again. It was exciting, it was scary, it was challenging. But one thought, one idea that just kept coming through is that we need to take baby steps, small steps forward and the next part of the process was developing some of those steps.

This dream is our dream for Sam, it is not solid or finite, it will change and it will weave around what Sam's dreams are. As he matures and has more of a say in things, this Path will become his Path, what he wants, what he is interested in and what he wants to do.