Bloom

IMG_7765Dada and Mimi finally arrived in Denver last week. It was so wonderful to have them both here for a quick visit. Tommy has a very clear grasp on the “visitor” system here in Denver. Visitors = toys and life is good. Tommy leapt into his dada’s arms the moment he saw him and the world was complete again. It always seems like his time here is so quick, but Tommy thrives when he’s here and it’s precious to watch.

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Last week something in Tommy clicked. Throughout each of his OT sessions his confidence level was high and his interaction with other children in therapy was beyond my belief. His eyes twinkled, his smile beamed, and he surprised me every single day with his energy and perseverance. I get so emotional just thinking and writing about it. He used every ounce of everything he had in him and leapt and jumped and did amazing things. Something clicked and it was magical.

At the end of the week Rob and I sat down with his OT for our weekly parent education session and she immediately asked how I was doing. As a mother, I spend every waking moment of my life worrying about my babies and my husband and so when she asked me how I was doing I sort of took a step back. I kept telling myself I was fine, but then my eyes filled with tears. Mostly happy tears for all of the incredible work he had accomplished throughout the week; but also tears of fear. I lay awake at night thinking about the “what if’s” ahead of us. I have so many fears about leaving our amazing support system up here; but she consistently reminds me to relish in the amazing achievements, even those ever so small little moments in time.

Over the past six weeks I have developed such a loving friendship and partnership with his therapists. They both wholeheartedly accepted us on the first day we walked through the doors at the STAR Center, and have since walked with us through some grueling days and some amazing days. They have held our hands, listened to hours of questions and seen me through a lot of tears. They are so much more than Tommy’s therapists, they are my friends; and I am forever grateful for this time we’ve shared together.

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In addition to some huge achievements during his OT sessions last week, Tommy continued to learn about several new foods and work up a few of the steps to eating with some of them. While he may not actually eat some of the new foods he’s introduced to, he was able to physically and visually tolerate some of them which is more than I could ever ask for. “Food School” as we call it, is tough. It’s exhausting to experience with him, but incredible to witness at the same time. Every day we work through agonizing baby steps with every single new food he’s introduced to, so literally if he’s able to look at it, it a win for the day. Baby steps.

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His food intake at home has been steady. He is on a medication that stimulates his hunger so we are grateful for a larger quantity of food in his body. He’s eating the same foods he’s always had, but more of them. I’ll take anything I can get. His sleep, however, has not been so great. He continues to wake up every day around 4:00am and if he does nap its brief. We are desperately trying to work through this with his therapists and have a few options we are experimenting with. He is exhausted beyond belief but manages to power through his long days.

Long days give us more time for memories. Every moment he shares with Claire brings him so much joy and laughter and it’s so beautiful to watch. He talks to her and protects her; but he’s quick to put her in her place when need be. She is everywhere every single second and he is never far behind her. I cannot believe she will be one year old in October. At times I take a deep breath and smell her precious baby skin after her bath. I squeeze her delicious thighs and wrap her little fingers around mine. I try to relish in whatever little moments I can steal with her alone. I take a moment to stare into her eyes and take as many mental pictures of these moments as I possibly can.

IMG_7662I thank God for her go-with-the-flow attitude and typical “second child” demeanor. I like to say God gave us exactly what he knew we could handle during the past year. I’m grateful for these two beyond belief.

IMG_7808There are times when I gaze into Tommy’s tired eyes and imagine the child he would be if he had a full night’s sleep, a full stomach, and muscles with full power to take on each day. His hyper-mobile joints require so much more work from his little body and his lack of sleep and food certainly don’t help. But then in an instant I blink and in front of me stands this amazing little four-year old boy who is blooming right before my eyes.

Incredible things are starting to happen each and every day; but to be honest, I remain cautiously optimistic about every little milestone he achieves. Anyone that knows me, knows I do my best to remain optimistic about everything in life; but when it comes to Tommy, I can’t help but remain realistic. My fears as his mother will never go away, but I have so many hopes for the amazing things I know he will accomplish in his life. I don’t know what tomorrow, or next week, or even next year will bring; but in this very moment, my darling boy is blooming.

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A Knot In Our Rope

IMG_7534I blinked and our four week break at home had flown by; and while I enjoyed so many things about being back at home, all I could think about was getting right back to Denver. Tommy was so happy to be home, and mentally and physically he needed the break desperately. We spent a lot of time relaxing and playing with those Tommy knows best. He missed cousin J more than anything and when they finally reunited, their laughter was infectious.

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Around the third week of our break at home, Tommy started regressing. His food intake fluctuated more and more each day, he was waking up at 4:00 am every morning with a few appearances as early as 2:15 am, and he wouldn’t go back to sleep. He was exhausted, we were all exhausted and the cycle continued. The only thing that got me through those last few weeks was the comfort in knowing we would be back with his therapy teams very soon and they could hopefully help us through it.

I am beyond amazed and proud of my darling husband who, despite our excruciatingly early wake up calls, managed to work all day and head off to graduate school twice each week. He left early Friday morning ahead of us to drive all of our gear and the car up to Denver. He dropped off the car at the airport on Sunday morning and got on a flight back to San Antonio. An hour later the kids and I landed in Denver. This past week he finished his final project and presentation of graduate school and I couldn’t be more proud of him. He has worked so hard and sacrificed so much for all of us during one of the hardest seasons of our life. I honestly don’t know how he did it, but I cannot put into words how proud of his incredible accomplishment I truly am. We miss him terribly.

IMG_7585We arrived at the STAR Center and it was as if we were coming home to family. Tommy and I had missed everyone so much. I was finally able to take off a subconscious shield of armor I had placed upon my heart when we left. I found it surprisingly hard to transition from a space where I didn’t ever have to explain myself or try to justify his situation to anyone, to being home and having several varying opinions on his progress.

I heard countless people say to me, “He looks fine…He’ll be fine…He’ll be eating new foods in no time at all…etc.” And while I so appreciated their concern and opinion, it’s always hard to hear someone tell you something about your child that they know nothing about. In fact, I had heard these words for four years and the bottom line is, we have life-long challenges ahead of us, and frankly those words just sting too much. I simply lead them to my blog to read and educate themselves and those that had further questions I was glad to answer.

As a mother with a child struggling with something so dynamic and unseen to the naked eye, it’s brutal to listen to others tell you about your child when the one thing I found myself needing most during our break was listening ears. I needed a minute to break down, to grieve, to breathe, and just be. I am so blessed with some of the most amazing friends who pulled me out of the house and sat with me. They just listened and supported me through lots and lots of tears that I had held back for four weeks while we were away.  In my opinion, the single most important thing anyone can do for a mother during a difficult time is simply be there for them…listen to them…and ask questions so that, in turn, you can better educate yourself on a little glimpse into their world.

IMG_7741_2Our first week was hard. His little body has worked tirelessly these past few days and he’s exhausted but happy. Right off the bat, the therapy teams were most concerned with his lack of sleep so we are testing a few options to see if hopefully we can come up with a solution. The problem is, oddly enough, he sleeps better here than he ever has in his entire life. We are trying to nail down the amount of mental and physical work his body needs to promote good sleep. The goal is to eliminate any regression when we get back home, so in the mean time I continue to enjoy my 5:30 and 6:00 am wake up calls…and I’m not complaining one bit.

One of Tommy’s many struggles with SPD and dispraxia includes transitions. We have grown increasingly anxious about his transition into the new school year, and in an effort to help him we introduced Tommy to a new group model of occupational therapy that will continue for the next three weeks. Once a week, he and two other boys his age, all with similar SPD struggles, spend one hour together to work on social integration. It is our hope that this will start to help him develop tools to prepare his body for the transitions ahead of him when we get home. This will be one of our biggest battles when we get back so we are focusing on lots of tools to support him in every way possible. The smallest transitions for a normal child can take months and months of work for Tommy, but our hope is that this upcoming school year will be as smooth as possible.

IMG_7650_2In addition to his occupational therapy, his feeding therapy has kicked into high gear this week as well; and it’s been increasingly hard to experience with him.  This week the team discovered another road block that may explain why he’s been struggling with various multi-sesory exercises we’ve been working on during his feeding therapy. They have identified that Tommy has an extremely over responsive tactile system which can send his body into a “fight or flight” mode when a new texture is introduced that is overly stimulating to him. This is a critical component when it comes to his eating because if a texture is the slightest bit over stimulating visually, has a strong smell, or intense texture it will take massive amounts of work to get past the textural component before he will even begin to work with it. Only after he has developed a motor plan for the food and knows its safe to look at, smell, or touch; then he can begin to work up the steps of eating to eventually become comfortable with it. Eating is more work for us than you can even begin to imagine; but he amazes me with his perseverance and patience and I am grateful to walk with with him through this each and every day.

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IMG_7605While the week was filled with some really tough moments, we had an amazing visitor to help brighten our week.  You may remember from my first post about SPD when I spoke about the moment when I called the first occupational therapist that was highly recommended to me by my dear friend. I called this woman whom I had never met and broke down in tears begging her to help me with my child. She came to evaluate Tommy the next day and the rest, as they say, is history. Mandy came this past week to visit us and the STAR Center for two days and it was so wonderful to have her. She was able to observe Tommy in OT and feeding therapy and speak with his therapists face-to-face. Her passion and love for my son is indescribable and I cannot even begin to express how much her visit meant to me.

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IMG_7661On Saturday we attended a fundraising event at the STAR Center for the clients and their families. The weather was beautiful and the activities were perfect for kids just like Tommy. When we arrived we saw a huge bouncy house and walked right past it as we usually do. Tommy has never jumped in a bouncy house because he is usually too uncomfortable with other children and there is never an opportunity to clear it out to give him a moment to jump freely. Until now…

IMG_7696The moment we noticed there were no other kids around we jumped in together and I prayed that he could experience this joy if even for a brief moment. He had the time of his life and I haven’t seen a smile so big or heard a laugh so hard in a very, very long time. My heart burst with joy for my precious boy and it was perfect. The smallest moments of joy mean more to me than anything and that twinkle in his eye during that moment was priceless.

IMG_7705Sister got in on the fun too. She, thank God, continues to be so easy going. I find myself holding her a little longer just before bed and when she wakes in the middle of the night in an effort to steal a few little moments with her when I can. While I’m constantly trying to support Tommy I often times run out of every ounce of energy I have when I can finally focus on my precious Claire. I know these darling baby moments won’t last forever so I’m trying to appreciate any time I can get. I am madly in love with her.

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At the end of the event we had some time to speak with the amazing Dr. Lucy Jane Miller who founded the STAR Center and has written and published two books and countless other articles on SPD. She is a pioneer in the field and is known world wide for her tireless efforts in research. The moment I met her I felt a lump in my throat forming and couldn’t help but tear up. I was at a loss for words and simply said, “Thank you. This place and the work of his amazing therapists has given us our son back.” Tears filled my eyes, but I knew I didn’t have to say another word. I know she felt the depth of my gratitude. She is a wonderful woman and I am honored to know her.

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During our time at home I had lunch with a wonderful woman who explained life’s struggles in a beautiful way. She reminded me that this moment in our life is simply a knot in our rope. A moment in time that has rocked our world and changed us; but is making us stronger in return. We’ve climbed this far in our journey and I have to allow this knot to help support my feet as I climb on toward the next knot that will come our way in life. This climb is tough, but I wouldn’t have it any other way.

Nine Months

ClaireMy precious Claire you are a beautiful light in our lives. It’s been nine amazing months and you have been such a gift. You continue to adore your brother. He snuggles and holds you, and he constantly keeps you safe when my eyes turn away for just a moment. He always says he wants to protect your head so you won’t fall as you are crawling around everywhere…it’s precious. You go with the flow. You smile every minute and you laugh often. We still think you look just like your dad with those precious cheeks and your stunning baby blue eyes. You have two tiny teeth and are growing more as we speak. You weigh a ton and you eat constantly.  Your just a happy, happy baby. Thank God for you sweet lovey.

 

Home

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When I walked outside of our hotel in Denver early on Saturday morning it was chilly. I took one last deep breath of the crisp, cool air and sadly loaded the kids in the car and we were off. I looked out our car window at the beautiful mountains in the horizon. It had rained hard the night before and it was as if the skies opened and the sun was radiating through the clouds. I absolutely didn’t want to leave.

I love Denver. I love the air, I love the mountains; but most of all I loved our protected little world of the most amazing therapy for our son. I was terrified to come home without the comfort of knowing that tomorrow would start another day of amazing work and growth for Tommy in the perfectly controlled envorionment at STAR.  I know in my heart this four week break is so necessary for him. There will be no occupational therapy and no feeding therapy, which is so hard to believe; but at the same time, so critical for his little brain to relax. He worked harder up there than I could have ever imagined, and now it’s time for him to just be the little four year-old boy I know he can be.

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When we got back on Saturday, everyone was exhausted. We walked in the door and dropped our bags and crashed. As I write this, I still see several of those bags in the distance, untouched. There are piles of laundry, dishes in the sink, and two Real Simple magazines begging to be opened…and all I have the energy to do is sit in my bed and write.

So many people have checked in on us over the past few days and it has meant the world to me and Rob. Several have asked how Tommy has been adjusting to being home and the truth is he’s so happy. He’s spent a lot of time just being with family and enjoying his playroom again, which he loves. Our precious pups have loved having everyone back in the nest too. They want to be right in on the action and stay as close as possible to the kids.

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Every day this week I’ve been doing the best I can to slowly unpack and organize the house so that it is more manageable for Tommy. My hope is to get to a point where everything he needs in his daily routine has a consistent place and a visual cue for him. It certainly won’t happen over night…but we’ll get there.

One task we started immediately when we returned home is our new meal schedule. Although I was apprehensive about it, Tommy has been adjusting well and has managed to sit at our table and eat everyday, five times a day, with no problem. This is a HUGE mountain we are climbing; but the predictibility and consistency of our meal and snack times has helped him tremendously and I’m thrilled with his progress. We eat at the table, in Tommy’s special chair, with a red placemat and yellow plate five times a day. Breakfast is (at or around) 7:00am, snack 9:45am, lunch 12:30pm, snack 3:00pm, and dinner at 5:00pm.

Everyday he gets to choose his meals and snacks from a list of his preferred foods. After he chooses one it gets pulled from his list to try to push him to expand his foods throughout the day. The goal is to have one food from each group at each meal, and the goal is to give him some control of his meals to get him re-engaged with eating. It’s been tough considering he has so few foods to choose from, but he’s slowly getting the hang of it.

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The biggest challenge with this process is the fine line we have to walk to keep each meal he eats new and engaging. The goal is to prevent what they refer to as “Food Jag” where he will eat a food so much that he will eventually refuse it.  We do everything in our power to avoid this by ever so slightly altering the look of the foods. For example, he loves mini circle shaped pancakes and we have to cut them into different shapes or use cookie cutters to “surprise him” and keep it fresh and exciting.

The question I am asked the most is if Tommy has tried any new foods yet. Sadly, the answer is no, not yet. Because of his Dispraxia it will most likely take him years of being exposed to a “new food” before he puts it in his mouth and actually eats it. He will have to subconsciencly work through the 32 steps of eating that include tolerance, interaction, smell, touch, and taste before he actually eats it. This is our biggest challenge every day to continue to expose the same foods we’ve slowly been learning about from the beginning of his therapy. We have to walk a very fine line between acting like its totally normal to “learn” about foods at every meal and making sure he gets some sort of interaction with it, while not over loading him with it. There are some foods he can’t even tolerate visually so we are working at a snails pace. Every day has its new set of challenges and every day I have to constantly remind myself of the massive work and patience it will take to walk on this journey with him, but I’m up for the challenge.

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In the mean time, Claire’s enjoying the extra meal times and sister doesn’t miss a friggin meal. She just eats all the time and it warms my heart. As odd as it sounds, this is the first time in my life I’ve really had to feed a baby because the truth is that it never happened this way with Tommy. I can’t keep enough food in my house for her and I just love it.

The sweetest moments happen when I least expect it. I look at her and I look at Tommy when we are at the table and she is constatly staring at him, studying his every move, smiling and cheering him on as he eats. It’s as if she knows the amazing things he’s doing. They’re a great team. She loves him and I think the feeling is mutual.

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Clarity

kidsI really can’t believe we are rounding out our final week of our first leg of treatment. It has absolutely flown by. These two are still having a ball with each other. Claire started crawling on July 1st, my parents arrived for a visit last Wednesday, and we received two precious care packages with tons of goodies for the kids. Lots of love, lots of laughs, lots of memories.

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During our first week of treatment we received more information than any human brain can possibly process in a year. We were so grateful to finally have the words to describe this horribly bizarre and dynamic “thing” that was going on with our son. I guess I thought we had finally received our answers and we would continue on through our eight weeks of treatment and many years from now we would eventually get to a place where Tommy would be somewhat “cured” and he would ask for enchiladas and seared sea scallops and we could go on about our lives with a healthy, thriving boy. The therapists have been fantastic about slowly and methodically explaining each and every subset of SPD and which parts of the disorder specifically pertain to Tommy. We were told very specifically about Dispraxia and I remember simply nodding my head as if I understood. But I know now, I didn’t. It was as if my ears shut off during this part of the conversation but my head kept nodding. It wasn’t until a meeting this past Tuesday with the psychologist on staff that I really heard, absorbed and processed what was really going on.

The doctor and I were in the room and Rob was on the phone listening in from miles away. We went into the meeting with questions about how to parent a child with SPD, specifically as it relates to discipline. Tommy is generally an amazing little boy and while we don’t have to usually discipline too much, we recently have had to buckle down so much more this past year. He would frequently throw tantrums around meal times, when he had to get dressed, brush his teeth, or do anything without several warnings…”We’re leaving in 10 minutes Tommy.  In two minutes you have to get out of the shower.” Etc, Etc. So we simply thought we would ask questions about discipline and get answers from a specialist that had incredible experience with children struggling with SPD. Little did we know that every moment of the day Tommy was either struggling with a fight or flight reaction sensorily or simply reacting out of frustration from a subset of SPD that we had yet to really understand.

She started off by saying very simply, “If a child is Dispraxic on a level of 1 to 100, Tommy is about a 120.” My heart shattered. This was the first time I had really, really heard those words.

IMG_6994_2The Dispraxia Foundation website describes it as “…a neurological disorder throughout the brain that results in life-long impaired motor, memory, judgment, processing, and other cognitive skills. Dyspraxia also impacts the immune and central nervous systems. Each dyspraxic person has different abilities and weaknesses as dyspraxia often comes with a variety of comorbidities. The most common of these is Developmental Coordiantion Disorder (also known as DCD), a motor-planning-based disorder that impacts fine and gross motor development.”

The Doctor explained it to us quite simply. Imagine everything you do is a sequence set of stepping stones to get you from point A to point B. Children like Tommy can stand on point A and not see the next stepping stone in front of them. They can’t properly process the next movement in their brains. She went on to explain that most normal children may have to learn something new in life maybe 10, 20+ times in order to have a generally good grasp on how to do it. For example, learning to put shoes and socks on. Tommy will have to successfully put his shoes and socks on 1,000+ times, in the same context in which he originally learned the action. So if Tommy learns to put his shoes on in a blue chair right by our front door, he will have to repeat that action for years before he can do it without assistance. This is just one of the thousands of examples of everyday tasks that may seem so simple to most, but for someone dealing with Dispraxia require monumental feats to accomplish.

Another example happened just yesterday. We purchased some child scissors for him the day we arrived here and he’s been cutting everything he can get his hands on. I pick up strips of paper every day. Yesterday when he woke up he went right to the drawer where we always put his scissors and he grabbed them and walked over to me and asked, “How do I cut mama?” He had forgotten the action overnight.

Dispraxia and motor planning affect Tommy with his eating as well. He will have to repeatedly learn about a single food thousands of times, hopefully try it, know that it’s safe, and continue to try it again thousands of times before he will remember its ok to eat it. This is why he may try something one week and then two weeks down the road not want anything to do with it…this is very typical for Tommy. Our new schedule includes three meals a day (all at or around a specific time frame) and two snacks. Every meal will occur at the same table, in our kitchen, in the same chair, every day for years in order to set a consistent routine for Tommy to allow him to properly learn the action of how we will eat our meals. Of course there will be times when our routine will have to be adjusted for special occasions, but generally speaking, this is our new normal. During the school year he will have one snack a day and then come home for lunch, so he will learn the action of eating his snack at school and hopefully it will become safe and consistent for him.

IMG_7099Tommy cannot dress himself, he cannot fasten a button or zip a zipper. He will rarely use forks or spoons to eat. He will not play on a playground when other children are present, except if at his school because it’s familiar. These are just a few of the thousands of textbook things Tommy can and cannot do as a result of his Dispraxia. The conversation with the psychologist finally brought so much clarity to our situation, but at the same time brought so much sadness.

Dispraxia will affect Tommy for the rest of his life and we will have to make life-long adjustments at home and at school to continually set him up for success every single second of the day. The positive side is that Tommy’s intelligence will not be affected at all, meaning, he can learn anything and his brain will still function normally; however, its the act of learning and remembering a motor plan to execute the actions he’s learned, that is not functioning properly.

When we get home, I plan to create pictures for visual cues of most everything in our home as it pertains to Tommy. Our therapist are helping me so much with this and I will continue it through to every room in our home. This will help Tommy to remember where everything belongs and help him to remember, for example, what the action of putting on his shoes or brushing his teeth looks like.

IMG_6895_2After our meeting I went home and couldn’t even get the words out to explain to Marijane what was going on. I tried, but it was so hard. Over the past few days I’ve taken short breaks to sneak away and research Dispraxia but the minute I do I just start to get overwhelmed, and emotional and I have to step back. It’s taken me days to write this with a clear head and no tears when I think about the road we have ahead of us.

Tommy is alive and flourishing. He is happy and physically healthy. This is not fatal, but there is no cure. I’m trying to stay very positive; but for a moment I needed to feel sorry for myself and pray that God would give me and Rob the strength and the patience we need to constantly support Tommy. There are going to be days when I know it will be excruciating to walk Tommy through something he’s learned a billion times, but I know I can’t show him my exhaustion. He deserves nothing but total support and we’re going to give him every ounce of it in us.

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Rob and I were given a precious gift on a beautiful summer day in June four years ago. He is not ours to keep forever, but God has entrusted him to us to help him learn and flourish and grow into the amazing man I know he will become. We have a major job to do. We have days ahead that will be full of joy and days that will be full of frustration and exhaustion. However, I know God will continue to guide us in the right direction. I’m standing at the edge of a major crossroads in our life and I’ve just got to grab Tommy’s hand and jump. I believe in him, and I believe his future will be bright.

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