Friday, December 23, 2011

Embracing Miracles

It's that time of year again. Christmas is upon us, and it's time to reflect on the past twelve months. It's nice to think about our successes as well as our shortcomings and how we hope the new year will be better. It's a good time to consider what we have learned. Somehow, in the midst of the mundane yet crazy busy year, I have learned to truly believe in miracles. Maybe I always did, though. Maybe this blind faith was always lurking just beneath the surface, but needed something concrete and personal to bring it forth.

Let me explain. My youngest child is now age 3 1/2 and has demonstrated the ability to eat a normal meal only a handful of times. By "normal," I mean an age-appropriate portion or consistency, and I also mean that the meal would take place without gagging, choking, pain, tears or vomit. Actually, just getting him to the table at all is sometimes a feat. The main issue is gastroparesis, a condition that makes it hard for him to take a lot of food in at once, as the stomach doesn't pump efficiently. A recent trip to the nutritionist shed light on the fact that he is getting only half the amount of calories daily that a child his age and size should receive. This is not despite our best efforts, of course. He is still on formula, and it's done well keeping him alive, but he can't drink enough of it or add enough regular food to meet his appropriate caloric intake.

Despite this, he is not losing weight. He is, in fact, gaining. It's very slow, but it has happened. Because of this, he isn't a logical candidate for a feeding tube yet, even though the tube would ease our minds. In fact, his stomach moves so slowly, that if a tube were to be placed, it would go into his intestines instead of stomach, anyhow. That makes me really realize how tough this disease actually is. And yet... somehow... he thrives. Several doctors and therapists have mentioned that they can't explain scientifically how he could be doing as well as he is. In our numbers and facts-obsessed world, this just isn't ordinary.

During another recent appointment, I was told to consider that maybe Joshua simply doesn't even NEED those extra calories the way a typical child would. One theory is that he is often fatigued and therefore not overly active. Still, this thought is hard to feel at peace with. It's asking me to believe in unusual circumstances. It's asking me to trust in things I cannot see or have the knowledge to understand. It's asking me to believe in something that, in some of my darkest days, I have doubted, and that is a higher power.

But, this is what it has come down to. Until we reach a point where something tips the scales the wrong direction or some other decline happens, we have to just trust that all is well. Within that, believing in miracles has really become not an option, but a necessity. On a daily basis, I have learned to coast along on faith. The logical side of me still argues with this idea at times. It is very hard to put your child to bed at night knowing you weren't able to nourish him the way a chart would say you should, and yet trust that he is alright. There are still moments of doubt and tearful calls to the doctors. They question their judgement at times, too. It's a tough situation for all of us to navigate.

However, there always comes the blessing of a new day, with Joshua in his little footed sleeper, smiling and announcing he is ready to cuddle. I am always ready for the challenges we face, even when I feel slightly deflated. His smile and blue eyes inspire me. That, and the chance to look for more miracles. If I have one in my life, there must be more waiting. I look forward to another year of discovering them.

Merry Christmas and Happy 2012!

Tuesday, November 29, 2011

My Current Top 3 Things That Work

I've been thinking about parenting, and special needs parenting in particular. So much of it is guess work. I am constantly asking myself if I am doing the right thing. There are many decisions I have struggled with. In the end I generally feel good about choices I have made, but at times I could have used assistance from other parents who had been through similar decisions before. Of course every child is different, so what I have so say now may or may not apply to your situation. However, on the off chance that this helps someone, I will write about a few of the best things I have done so far for my youngest child, now age 3. These are the choices that have helped make our daily living easier.

1. Getting a wheelchair.
I realize for some families this is a necessity and not even a choice. According to our orthopedic doctor, we HAD to get one, too, and yet technically Joshua falls into a gray area. He does walk. Sometimes he can even run! But, his gait is clumsy and he tires very easily. We worked around this issue for years by using a baby stroller, of course. However, it started to become apparent that Joshua was not going to outgrow his issues, and that at times the walking even looks worse than it did before. On top of that, he is extremely tall for his age. His head was uncomfortably above the top of his regular stroller. I had the prescription for the wheelchair on my nightstand for quite some time before I could look at it without wanting to cry. Once I made the call to set up an appointment for measurements and choosing a seat, though, I felt more accepting. And when I saw how excited Joshua was, my heart was even happier. I started to see his wheelchair as freedom... for us both. This will enable us to take long walks or go on long family outings comfortably for years. It does resemble a stroller. It's a nice style. It's even "fire engine red" (per a certain 3 year old's request!) We don't use it every day, but I love knowing it is there. If you are on the fence about getting a wheelchair for a child who is mobile yet struggles, my advice is to go for it. I don't think you.ll regret it, ever.

2. Getting a handicapped tag for my car.
This is related to #1. We got our tag quite some time before the wheelchair, though. It came at the perfect moment, right before a trip to California in which, for still unknown reasons, Joshua lost his ability to walk for a few days. I still use it a lot. Like the wheelchair, I don't use it every day, but I love knowing it is there. I don't abuse it. Whenever possible, we try to park close yet save the actual handicapped spots for people who need them more. I do feel good about knowing we can park in handicapped when we need to maneuver the wheelchair, or when Joshua is sick or low energy. At times, he requests to walk, which I hate to deny, and the tag also comes in handy then. He simply cannot comfortably walk on his own from a far away spot. Being able to park in handicapped and then helping him successfully make it to the door helps his self-esteem, rather than him feeling like everything is too difficult for him movement-wise. If your child is mobile and doesn't always "look sick," be prepared for the potential for clueless, rude folks to question your use of the handicapped tag. This is a downfall, and yet it has only happened to us one time. I think the general public is getting a bit more educated that you cannot always SEE a disability clearly. Plus, when you know you are doing what is right for your child's needs, of course it should not matter what others think, anyhow. Handicapped tags or plates are there for those who need them. If your child falls into this category, even mildly, I suggest you get one.

3. Not obsessing about potty training.
This is tough as a parent. There is a lot of pressure from friends and relatives. Like with other delays, I have had to not think about the chronological age of Joshua too much and "what the other kids are doing." He's always gone at his own pace. I do have days where I panic about the time line a little. And, I have even wondered if his stomach issues and weak muscle tone could make full training an impossibility. I will cross that bridge when we come to it. For now, 99 percent of the time, I am able to gently suggest to Joshua that he could try to go potty, but let it go when he can't or won't. I change his diapers without complaining in front of him. He still drinks formula, eats baby food and sleeps in a crib. It therefore shouldn't be shocking that potty training is on the back burner. There are so many other things to work on! I think his little brain is going all the time. He's improved his speech and has become somewhat social at preschool! These are things to cheer about and focus on. I hope I am not still changing diapers when he is in kindergarten, but one day at a time will lead us to whatever outcome is meant to be. If your child is similar, try letting the potty thing go to some extent. Encourage, accept, don't pressure, and see if you both feel a lot more content with each other.

There are other decisions I feel good about, too, but right now these are my top 3. Of course I have my share of mistakes also. (See previous blogs for some of those confessions!) There are so many important things to figure out all the time while raising children. When kids have extra needs beyond the ordinary, life becomes even more confusing, but remembering to relax and ask for help go a long way towards making daily living easier.

Thursday, November 3, 2011

This Is Why It Hurts...And Why It Will Get Better

Often there are things that happen during the day which are so draining, I don't feel like talking about them later. They are the ups and downs of everyday life, sometimes too mundane to rehash. Then there are the things that are so painful to me that I can't speak of them out loud, even if I wanted to. Sometimes, though not always, I can write about them instead. I know my last blog was all about looking on the bright side. I'm still in that mind-frame. But I am also a parent, and a sensitive one at that, and I had a tough day.

There is always a learning curve in mothering. At first you have to try and decipher the sounds of different cries, to change a diaper, to breastfeed or mix formula. Later, there is the discipline, potty training, or choosing a preschool. Second or third babies are easier in these regards, unless they have special needs, in which case you are learning all over again.

Such is the case with my third child. He isn't even the only special needs kiddo in our bunch, but of course every situation is unique. So far I have learned how to give him medicines, mix his supplements, clean vomit out of everything, order and feed his special formula, use an EPIpen, carefully read food labels, organize his therapy appointments, do exercises with him at home, keep track of his rotating needs with various specialists, coordinate habilitation and respite workers, advocate for him at school, count calories, order him a wheelchair, use a breathing machine, have him fitted for shoe inserts, smile when he has nights in which he wakes up as much as a newborn, bravely hold his hand as he goes for x-rays, MRIs or endoscopies, stay up late searching for answers on the internet, ignore depressing statistics, and countless other jobs I thought I could never handle. Meanwhile, while I don't do it perfectly by any means, I also have responsibilities with my other kids, my husband, my house, my parents, my volunteer commitments and my friends.

So, the other day when the endocrinologist said we needed to start checking blood sugar levels at home for hypoglycemia, I confidently thought, "Sure, no problem." Ok, I was a little nervous, because the nurse only gave me a very quick demo, but I still believed I could handle it. Unfortunately, I was mistaken. Not only did I not understand how to do the test well enough, but I also got emotional.

Today I picked Joshua up from preschool, and he felt cold and clammy, one of our signs that his blood sugar may be too low. I waited until we drove a couple minutes to the Target parking lot, because he was so worked up at school, and then I got out our blood sugar monitor and the supplies. Still confident despite his wails of protest, I didn't waste too much time bribing him with the promise of a blue icee and getting started. With trembling hands (a surprise to feel), I used the little lancet that came with our kit. It seemed I didn't get enough blood for the test to work. Determined, I got out another strip and lancet, adjusted the setting, and went for it again. This time I drew enough blood and I hurt him on top of it. I think the silent tear and look of disbelief on his face at that point was far worse than the earlier screaming. (In moments like this, I always think of that line from that old song, Mandolin Rain- "listen to my heart break..." - because surely mine is ready to rip in two). I apparently didn't have the strip in the monitor correctly that time, because I still didn't get a reading. At this point, I gave up, went in to Target for the treat, and we went on our way.

After an OT appointment, we returned home and this was all still weighing heavily on my mind. I knew if I could just learn this important job, my mind would be at ease. And so, before Joshua's nap, I somehow worked up the courage to try again. He was not a fan of this idea, of course. In fact, he was flailing, crying and screaming. (What a great time to be wielding a needle, right?) I finally had to get tough and have my husband hold him down while I did the test. This time we were back to the "not enough blood" problem, and I didn't have the heart to try it a fourth time. I ended the afternoon feeling like a failure.

I know that I will manage to learn this, the way I have learned everything else. I need to breathe and get the basics down, which will empower me, which will in turn calm my child. I know I am doing it for his own health and safety, but this is the first time I have had to hurt him. Regardless of the caring intentions behind it all, and the fact that I am following doctor's orders, it pains me greatly. I will eventually file this away under "things that seemed like a big deal at the time but aren't anymore." I can't say I will look back and laugh. I won't. But, it will get easier.

Tonight I will forgive myself for not being perfect. Tomorrow I will cover Joshua with kisses and hugs when he wakes up and we'll look forward to a new day together. I need him to know that I am not always good at things, but that I am not afraid to try again. I want him to understand that sometimes life does hurt, but that the great moments outweigh the hard ones. It's a tender age to learn such lessons, but I believe it is within his realm to understand. When he is older, I will be able to explain more to him, like how truly privileged I feel to be on this journey with him, to be his mother, and to have been entrusted with his care.

Sunday, October 23, 2011

Focusing on Ability

I have written before about the ways in which Joshua, due to health issues and developmental delays, is still babyish, and how at times this is a blessing in disguise. I still feel this way. The sentimental mommy in me is never in a hurry for him to grow up. But I realize that there are undertones of negativity to this, too, as it focuses on what he CAN'T do. For example, right now, at age 3 1/2, he is still not potty trained, still walks awkwardly, still drinks formula as his main nutrition and rarely sleeps through the night. I do spend a considerable amount of time thinking about these concerns, writing about them, or discussing them with close friends.

About a week ago, we needed things at two different stores within a shopping center, and I decided we would walk between stores rather than re-parking. Given that Joshua has had a bit more energy lately due to a new med (hooray!), I didn't even bring the stroller. Joshua's brothers were with us also, one of whom is pretty much never in slow motion. In an attempt to keep up, Joshua was walking pretty fast, with his feet turning inward and his left hand raised slightly more than what is normal for the age, with his right arm flailing. I found myself watching him a little sadly and thinking, "He lacks the ability to walk normally." Then, I stopped myself and re-worded this internal observation to simply this: "He has the ability to walk." He can walk! Seriously, what a miracle, given the early days where we never thought he would! It certainly put things in perspective for me. Since then, I have used this as a mantra on days where he seemed really behind with his motor skills or when I made the mistake of comparing him to his peers. I would think, "He has the ability to walk," and then suddenly nothing else mattered much.

This lead me to think... what if I looked at all of his struggles this way? Then, "He lacks the ability to eat properly and is still on formula" could become: "He has the ability to drink formula." See what happens when you take out the negative details? This could even work for other things in my life, and not just pertaining to special needs or to Joshua. I see it as a way to slow down and calm myself when thinking about my many responsibilities or when the future seems to be way too much to process. One example I can think of is how I always criticize myself for what I can't get done rather than what I can. This can be overwhelming. So, instead of thinking, "I lack the ability to keep the house clean and organized," how about: "I have the ability to clean or organize small things one at a time when the schedule allows." Or, for that matter, how about, "I am grateful to have the ability to get out of bed in the morning and accomplish all that I can."

There really is a lot of power in positive affirmations. Words, whether spoken out loud or thought in my mind, have always held a lot of power for me. It is therefore crucial to me that I remain aware how truly lucky we are, and that I am as positive as I can be with my vocabulary. Try choosing your words more carefully. What do you have the ability to do? What do your kids have the ability to do? Maybe the inabilities will fade while the good stuff moves to the forefront where it belongs.

Sunday, September 4, 2011

Letter to a Younger Me

Dear Debbie at age 16,

I know life seems hard now. You worry a lot about what everyone else thinks. There are events that seem monumental currently, but that won't matter in the big picture. It is difficult, at your age, to understand this. There is so much coming down the line that will be challenging, so you should have fun now while you can. By the same token, in ways, the wisdom of age will make you a happier person. Years from now, this will all make sense.

Let me share with you a few things I have learned:

Beauty is not all about being young and skinny with great hair and perfect clothes.
I regret that it took me so long to realize this, but it is true. It's the reason that mom I know from the pre-school who is bald from chemotherapy has never looked more gorgeous. It's the reason my 93 year old grandmother radiates with beauty when she smiles. It's the reason that, much to my surprise, I feel most attractive not when thin and made up, but with weight to loose, a baby on my hip, and his sleepy head on my shoulder. Beauty comes in many forms and does not have to be found in a conventional way.

Heartbreak doesn't last forever.
I know it feels like it will. But the world is big, and the relationships you form now are just the beginning of a life of connecting with others. If someone is cruel to you, run and don't look back. You are so much better than that. By the same token, if someone does treat you right, don't assume that will come again easily. True love is rare. If it matters, it will endure, and you should embrace that. Also, don't overlook people. Sometimes the ones you take for granted now are the ones who care the most, and who will do anything for you, even decades later.

Struggles make you stronger.
This is something your parents or teachers will say often, and that you will roll your eyes at. It turns out it is good advice. Not only does adversity make you stronger, but it also makes you a more interesting person. It sets the stage for challenges that will come down the road, because life definitely is not easy. You can choose now how to view things, whether to see them as road blocks or blips on the radar. Try to do the latter. Also realize that out of those situations that are the most difficult can come your finest hours. It's this ability to get beyond a D on a test, being picked last for the team every time, or having a fight with your best friend that will empower you to, years later, be able to pick up the pieces. There are things that will happen to the adult you that you can't begin to imagine now. You will need to learn to advocate for yourself so that you can fight for your children. They will need your positive but firm voice to help them get what they need at school, in doctor's offices, and in life. You will be their biggest fan, but not if you can't believe in yourself first.

Maybe part of the joy in our lives is not knowing what lies ahead, but I also think glimpsing the future can make you slow down and realize what truly matters. You will have so many good moments to outweigh the bad, you will laugh more than you cry, and you will be loved.

Debbie at age 36

Sunday, August 14, 2011

On Thinking You Know...When You Really Don't

One of the downfalls of sharing so much online is that it occasionally opens one up for criticism. I have had a little of that here and there, and it has never been anything too dramatic. Something happened the other night, however, that shocked myself and many who saw it unravel. I don't like to continue negativity, but in as positive of a light as I can spin it, I need to talk about this. It isn't just for me. It is for the other parents who also share online through blogs, Facebook content or Twitter. I have enjoyed reading their ups and downs, their daily anecdotes as well as their struggles. We need to continue to tell our stories, because they matter. I plan to do so. I will not let one cruel person make me question what I share.

In the midst of an ER run with my youngest the other night, (because he had a very high fever), I went on Twitter via my phone to pass some time in the waiting room. I asked if anyone was still awake, because, hey, the ER in the middle of the night is a little lonely. One of the first people to respond was someone I share mutual friends with, but do not know well. She has caused waves with others in the past, but I, because I am a nice person, continued to follow her online and allow her to follow me, too. It started out with her asking if I needed anything. Sounds nice enough, right? Then it very quickly proceeded to her accusing me of lying about not being able to attend a pot luck she was having over the weekend. After that she started making cryptic comments about how she hoped my child would get better and for me to read into that however I wanted. It really made no sense. Then right after that, which I unfortunately did not catch until the next day, she "happened" to post a link about a mental illness in which a parent somehow finds the time to fake illnesses in their child, make them appear sick and "hospital hop" seeking attention. This was followed by the hashtag: #justsayin.

This person has met me only twice in real life and has NEVER met my child. If she would have taken the time to learn the whole story, rather than just the window crack she could see on Twitter, she would know this:

Joshua has developmental delays as well as some health (mostly gastro-intestinal) concerns. I have spent a lot of time in my writings saying how fortunate we are, and that our problems are nothing compared to so many. I don't seek sympathy, but I enjoy sharing what I do know and reading about others who have similar concerns with their own kids. When someone tells me that a blog entry, or even a tweet, was something they could relate to, it makes me feel good. Our doctors have had a hard time getting Joshua to fit any one clinical picture, which is not unusual. It may make unkind and closed-minded people, such as the woman mentioned above, assume there is "nothing there" then, but that is not so. For lack of knowing what else to call it, for now, our doctors use "mild cerebral palsy," while also being quick to tell me they know it is more than that. Again, this is not unusual. There are so many neurological, genetic and metabolic conditions that it is like throwing darts in the dark sometimes. Some children never receive a conclusive diagnosis.

As for the hospital trips, maybe this person could have taken the time to ask about our schedule. We go to the children's hospital here once or twice a week just for simple pediatric therapies such as OT. Also, all of Joshua's doctors work out of that hospital, so whether we have a check up with a specialist or just a run of the mill cold to look into, that is where we go. Our ER visits are likely an average amount. I go if there is an alarmingly high fever, vomiting that will not stop, or an injury, as any good parent would. So yes, you may see a "check in" to the hospital more than what seems average, but it is not always for something major. It is definitely not for something I have made up for "fun" (in all that spare time I have, you know!)

Maybe this person has seen me say that we are going to California and Wisconsin for medical care soon. I happen to know many parents who have traveled out of state to seek medical care for their children. It isn't that abnormal. If this woman would have taken time to ask, I would have explained this: We were told to seek a second neurological opinion on Joshua. The question of metabolic/mitochondrial disease has also been considered, and so I was fortunate to find a doctor somewhat close to us in California who specializes in all of these areas. We are going to Wisconsin because our gastro-intestinal doctor said it is the next step. In fact, he wanted us to go to programs back east that lasted two months! I was happy to find a shorter plan in Wisconsin. Joshua has already been through feeding therapy at the hospital here, and it didn't increase his volume of how much he ate. He has flat-lined on growth. (Miraculously, he is not losing yet!) He will not be able to sustain long term on the amount he is eating. We don't know enough about his gastroparesis to know what his stomach really can handle in one sitting. He may have hit a ceiling as far as his eating ability. Our doctor feels that it is vital to get more information and maybe do some intensive feeding therapy, seek alternative ideas and gain knowledge for what the future holds. It may still result in a feeding tube being placed. I asked about twenty times over the course of several months if we really needed to travel for this, and each time the doctor or his nurse reminded me of the reasons that we do. I hate to fly and be away from my other two kids. This is not something I want to do. It is something it turns out I HAVE to do for my baby. Who wouldn't?

I choose love and explanation over hate and yelling. But I still had to speak out about this because the woman behind the ridiculous assumptions was so wrong, and because I am sure there are other parents who have been in this situation before. I will continue to share our journey. I will be open about my bad days as well as the good. I will do everything I can to help my child until his doctors and myself are at peace with knowing we have turned over every rock within reason. It is not crazy. It is responsible, logical parenting.

Sunday, July 24, 2011

Precious Time

Given the experience I have had with special needs and the time I have had to get used to the idea, I have been pondering why I still feel such a roller coaster of emotions over it constantly. Sure, autism is tough to manage, but I have been down this road before. And yes, boy number three has more physical movement struggles than I have dealt with before, but there is something else. I thought about this all week and then it hit me: I have a chronically ill child. Yes, autism is chronic, but what I mean is: my third born feels physically sick more often than not. I am talking about the extra diagnoses that make him medically fragile.

Some of the things we deal with are reflux, gastroparesis, food allergies and fatigue. On a daily basis, he may feel too full after just a few bites of food, might have a burning throat or upset stomach, or be overly tired while his peers run circles around him. It is heartbreaking as a parent to see your child in pain so often. Our medicine cabinet is much fuller than I would like. We have tried many medicines to control the symptoms as well as added some vitamins to the mix. His formula is a special kind that requires a prescription as well.

And then there is the great unknown, and the fact that his collection of symptoms suggests a larger, all-encompassing diagnosis that has so far alluded doctors. The immature gait, the unexplained fevers, the slow stomach, the lack of energy, it all adds up to something, they say. "Something"- and yet no one knows what.

At certain times I have expressed my desire to appreciate every day, but I doubt I have ever written with brutal honesty this simple fact: I do not know how long my child will live. Yes, his ailments may turn out to be pesky things that will improve some with time, and he may learn to adapt and live a full life. Without a clear diagnosis, we live in doubt and sometimes fear. I do realize we are not alone in this, and that many other parents, TOO many other parents, share this experience. And yet somehow it has been hard for me to identify my feelings about it or want to share.

This is why I drop everything and lay down with J.C. when he wants to cuddle. This is why I sneak into his room to look at him sleeping at night, or why I sometimes am secretly excited if he wakes up. This is why I do enjoy my breaks but miss him after a few hours away. He calls to me... time calls to me... more precious when it might be too short.

Friday, July 8, 2011

For the Love Of Twitter

Several months ago, at the urging of a friend and also driven by a willingness to help my favorite local non-profit, I joined Twitter. I thought at first that I would just get my feet wet, learn the ropes, and share pediatric feeding or autism tips occasionally.

I certainly did not expect to quickly connect with many other people who not only wanted to exchange information but be my friend. Taking that one step further, it was not long before a group of us decided to meet in real life, and we continue to support each other via tweets, whether it is someone needing advice or simply making each other laugh. Did we get along just as well in person as online? Yes.

Something invaluable to me has been connecting with other people within the autism community. There is simply no better forum for fast, appropriate exchanges of all kinds of information on the spectrum. It is also so nice to tweet out a "having a rough day with kids and autism" kind of thing and have a warm response of, "I know how you feel" and "Hang in there!" I feel like I get similar support on Facebook, yes, but there is not that "sharing with the world" feeling by any means. There is something liberating about saying what you know or feel and knowing it is "out there" for anyone to read. I have connected with so many bright, positive and productive parents of children with autism this way. And, as a mom of two kids on the spectrum and with other medical issues at play, some days, sadly, Twitter is the only adult interaction I get.

Some critics of Twitter will say, "Yes, but do I really need to know that you ate a sandwich for lunch?" To this I say, no, most people on Twitter are not sharing mundane tidbits like that, but if they do, then yes, it matters. That is part of the point. The every day things, the meal you enjoyed, that movie you just saw, or the song you are currently listening to are part of what makes you unique. If you balance that with good information, positive interactions and support of others, then followers will value hearing about the little things you love, too.

I can't fathom that my interest in these connections I have made will diminish at all. In fact, I think that with each day that passes, with each new diagnosis (or heartbreak over the lack there of) with the kids, I will crave this mix of fun and intelligent exchanges even more. Don't have Twitter yet? Try it... with an open mind... and watch what happens. I predict only good things.

Monday, May 30, 2011

As The School Year Closes...

This past week marked two milestones. Ben completed 4th grade. Zachary graduated from kindergarten. I spent their last day at the school, complete with tissues.

We had to say goodbye to the fabulous teacher Ben was lucky enough to have for two years. In this time, the teacher has taken on the daunting task of trying to figure out how Ben operates. What things set him off? What methods work well for him? And what, (because he will never open up), is making him sad on certain days? The teacher has dealt with Ben saying the same line to him, at the same time, every day for two years. Yes, every day after lunch, Ben repeated the same sentence to him. And yet, he never lost patience. We received hand-written notes daily. As a parent of a child with special needs, this is invaluable! I feel so fortunate to have had this truly amazing teacher work with Ben for two years. I am forever grateful to his dedication and his ability to see the potential and the intelligence in Ben. The best part of the last day was seeing Ben's smile as he participated in a party with his seven classmates. He proudly showed off a K-Nex amusement park they had built. It felt like the culmination of what I have known he needed all along, and all I have tried to do for him. This is what I have most wanted for him above everything else: moments of true joy.

Zachary participated in a darling performance on the last day, complete with a kindergarten-sweet rendition of "What A Wonderful World." I sat through the show thinking that, for all the times the special needs of his siblings take over, we have not done too badly after all. The most tear-jerking part of the performance actually came when Zachary's classmate reached out, twice, to help guide a profoundly handicapped girl through the stage movements. It touched me because I knew Zachary, had he been standing next to her, would have done the exact same thing. Like Ben, Zachary had a great teacher this year! She was just the right mix of kind but firm, and he flourished under her guidance. Much like the gifted/special ed class is perfect for Ben, the regular ed classroom is the right fit for Zachary. In every way, he fits in, understands the work, and enjoys the academic challenges without a need for extra assistance.

I know not every day of this past school year was perfect. I know I forgot to sign some papers and that we missed the boat on a few homework assignments. I know there were times that other kids were mean on the playground and I didn't always know what advice to give. I know that I wanted to be there more. But I think the overall picture was one of success. I look forward to the years ahead, even the looming teenage ones. I feel empowered to weather any storm, because we have done it before. What always comes through in the end is the light.. a small ray of hope that is laced with the best emotion one can feel towards their children: PROUD.

Monday, May 2, 2011

What I Wanted To Say...

Last week, I was asked by someone I know if I ever wish I hadn't gone for the third baby, "since he is so much extra work." The question floored me, and I had to remind myself, as I do often, to choose love over anger. I have to assume the question proposed still could have been laced with good intentions. Perhaps this person was trying, in a strange way, to say that he sympathized with the busy days and emotional overload that comes from raising a child with extra needs. Too shocked by what was uttered, though, I could only respond a pathetic, "no" before walking away.

If given another chance, this is what I would say: I do not ever regret having a third child. The hours spent at therapies or doctors' offices exhaust me, but they are not an interruption to my life. They simply ARE my life. The joy that has come from my son outweighs any difficulty. I would feel this way even if the needs at hand were far more severe than they are. I know this in my heart. Everything he accomplishes is a miracle because we never know how far he can go and it all feels such a glorious surprise when he learns a new skill. Yes, I feel bad that things are hard for him, but isn't life, in certain ways, hard for all of us? And think of this: While he may struggle to run and jump and maintain endurance, he is learning, at a tender age, to stop and smell the roses. He appreciates the shape of a leaf, the feel of a raindrop on his skin, or the warmth of the sun. Truly, the observations he makes about things we often overlook astound me.

Due to some portions of his neurological and medical issues, I will admit that in my darkest hours, I worry for his future. Will his left side always be weak? Will his stomach ever learn to handle more food intake? Will he always walk "funny"? Will he require a wheelchair? Will he live to be an old man? But then I come back to this thought: All that truly matters is now. This moment. This child. This life. This miracle I have been entrusted with.

So it isn't about regretting having a third child. It is about what I would have missed if I HADN'T- which is everything.

Monday, April 25, 2011

Overdue Recognitions

This blog is dedicated to the unsung heroes, the everyday people who silently do great things behind the front lines without expecting recognition. In my house, that would be my husband and my middle son.

Because I am so open here and on other forums about my children's special needs and our crazy daily schedules, I get a lot of nice compliments along the lines of, "You are a wonderful mother" or "I don't know how you do it."

This is how I do it- I have, thanks to my husband, been able to dedicate 99 percent of my mental and physical energies to the care of these kids. We function as a family because I am not worrying about cleaning the house or cooking dinner while I shuffle the kids to therapies or medical appointments. If dinner does happen, it is usually via the crock pot, but if it doesn't, no one complains. I am also able to mentally "check out" a few times a week to listen to music, go to a movie, get coffee with a friend or read. My husband understands that these things are necessary. Sometimes, even after working a full day at the office, he allows me to relax while he makes dinner or, better yet, takes all three of the kids out so I can have a quiet house for an hour or two. He also takes his turn with some of the medical necessities, taking our oldest to the psychiatrist, doling out the line of medicines to everyone in the mornings, or taking kids to urgent care when the unexpected happens. He lets me sleep in some Saturdays, even though he is exhausted, too. He helps motivate our toddler with feeding issues to eat, while silently suffering with a swallowing disorder of his own. He does all of this and doesn't talk about it much or expect anyone to sing his praises.

Following in these footsteps is our six year old, positioned in-between two special needs siblings. Somehow, in the blur of our days, he learned to read, write and make sandwiches. He quietly gathers homework items for my oldest, who is unorganized and easily overwhelmed. He hands me wipes and blankets when my youngest refluxes or cries. He opens doors when I am pushing a stroller. He even offers to carry the diaper bag. He wordlessly folds a basket of laundry when I am so tired all I can do is stare at the walls. He has learned by example that creating order in simple things makes the huge issues of life feel lighter. He appreciates someone noticing his skills, but doesn't demand that you do.

I am immensely proud of these two guys for the way they help balance our intricate family life. I literally could not do it without them, and I hope they know how much they are loved.

Thursday, March 24, 2011

Autism... Not Just for April!

April is Autsim Awareness Month, and we are already hearing stirrings about various events and reasons to support the cause. It is my feeling that autism is widely known about but not well understood by the general public. It is one thing to donate a dollar to Autism Speaks at the Toys R Us check out or display a puzzle piece sticker on your vehicle. But how can you truly raise awareness either in yourself or for others? And how can you make it reach beyond one special month of recognition?

I think it starts by erasing what you think you know. Many people feel bold enough to insist what autism is or isn't, even if they have no experience with it themselves. Autism is a spectrum disorder, meaning that there are kids at mild and severe levels plus everywhere in-between. Autism does not look the same in any two people. It is unlikely but possible to spend time with someone with autism and not see any "autism red flags," on a good day. In that, one of the hardest things for parents of the higher-functioning kids is hearing, "Well, at least it is mild!" Yes, we count our blessings, and yet this is like saying someone's tumor is "a little bit cancerous." When autism affects your household, on any level, the emotions at hand are fairly universal. I do not believe that parents with mildly affected children process the diagnosis differently, and in fact, the isolation level may be higher due to a lack of sympathy from others.

Even if you do not have a child with autism, you might know one. Your student, nephew, neighbor or friend's child might have autism. If nothing else, your own kids will one day study and work next to someone who is on the spectrum. With 1 in 88 affected, it is inevitable.

Reacting with compassion to individuals with autism makes a better world for all of us. In practicing kindness, we are reminded that we all are different in our own ways and simply want to fit in. The same goes for how we react to the parents of children on the spectrum. If you see a child acting out in public, please do not assume the parent has no control. In fact, he or she may be ready to cry with exhaustion after trying every standard trick in the book. Parents of autistic children spend many hours reading about autism, working on behaviors, and driving to and from costly therapy or doctor's appointments. They have had to fight hard at schools to get their child what he or she needs in the classroom. They sometimes have to make heartbreaking decisions about medications. They feel guilty about not spending enough time with their typically developing children. They often do not have time for socialization the way other parents do. They question their own strength every day. There are many lonely times.

In April and beyond, consider what you can do to help. You might be surprised how small but well-thought-out gestures can have lasting effects. It doesn't have to cost any money. In fact, some of the best gifts I have gotten were a smile or a nice compliment. If you have it in you to do more than that, consider telling your friends what you have learned about autism, or even blogging about it. Bring a meal to a family in crisis or offer to babysit for them so they can have a much-needed night out. Volunteer for a local autism organization. I think everyone benefits when kindness is at work, not just those on the receiving end.

Sunday, February 6, 2011

Milestones... Hit and Missed

All of us like to set goals and deadlines for ourselves... ("I will lose 10 pounds by next month... I will paint the bedroom before Christmas... I will get my in-box emptied by Friday").

We set deadlines for our children's milestones as well. You often hear someone state that their child has to be potty trained before the new baby arrives or that the pacifier must be a thing of the past by the time the child reaches a certain age.

I have definitely had my share of these moments as a parent, being convinced that a certain skill must be achieved by a specific date or that a habit needed to be broken by a particular age.

I was especially textbook-following with my first child. I did everything when I was told (Bottles gone by 12 months... check! Crib gone by age two... check!) When he failed to walk at 11 or 12 months like his little buddies in our playgroup, I went into panic-mode. He didn't fully walk until 14 months, which was so late in my mind, yet in retrospect was perfectly within the normal range.

I relaxed more with my second child, who happened to hit milestones early yet hold on to comfort items (like his beloved pacifiers) much longer than I would have allowed my first child to do. I started to learn it was ok to stretch the limits of normal.

This was good practice for having baby number three, for whom everything has been slow. He sat at eight months, not six. He walked at 17 months, not 12. Still, I got stuck on a few of those self-imposed mothering deadlines, anyhow. I thought he needed to learn to run by the time he turned two, and he did, somewhat, though it never looked quite like a normal run, and it still doesn't. He chooses not to move fast very often, and some days even a slow walk is a struggle. Knowing his stroller will be outgrown at some point and he will need assistance for longer outings, I looked up "child wheelchair" the other day, and then decided that was the saddest thing I have ever Googled, but the fact that I was able to type the words and consider some options for the future was a good sign of acceptance.

I remember finding it odd when Joshua had to remain on formula past his second birthday. At the time, I prayed he would be done with it by age three. Now with his third birthday less than a month away, I realized that I actually no longer view a specific end in sight for this nutritional support he receives. Somehow in the blur of day to day life, I have let this former deadline go. I am no longer thinking of how he "must" learn to eat better by a certain age, and I am not worrying what anyone else thinks when we are out and they see me pouring formula into a sippy cup with a soft spot (which actually looks quite a bit like a bottle). Instead of viewing the formula as a negative, I have started to view it as a positive, allergen-free, high calorie lifeline for Joshua. It is a part of him and it may be for many years.

The silver-lining to having a child who needs to take his time with things is not only that I have gained patience, but that we have a baby for a little longer than most. It is hard to complain about still needing a crib, stroller, diapers, pacifiers, blankies, baby foods or formula, because truthfully, this is a beautiful stage of life that typically passes too quickly.

Thursday, January 20, 2011

But Who Am I?

It has come to my attention that even when someone directly asks me about myself, I still end up talking about my kids instead. It is true, they are a huge part of my identity. There are aspects of my personality and outlook on life that are different now than they were before becoming a mother to these three unique individuals. Despite this, I know that there are also things that are intrinsically me, and that haven't changed over time. I am going to challenge myself now to describe the person I am without mentioning my kids or my role as their mother. I know this will be difficult!

I was born in Illinois and I was a concerned and quiet child, preferring to be alone, but developing some wonderful friendships as well. I was cautious, not the least bit athletic, and I collected dolls. I read constantly. A trip to the library was my favorite outing.

I became slightly outgoing in high school to an extent, but more so in college. Leaving home to attend school out of state was one of the best things I ever did.

Colorado continues to have a special place in my heart, but I adore the desert of Arizona. I like the summer monsoon storms, the smell of creosote after it rains, the brown mountains and the impossibly blue skies.

Writing has always been a part of me. I wrote my first short stories at the age of three and later developed a liking for poetry and newspaper articles. I have also written about things that are true and painful to me. In every way, words provide me a healing that nothing else can.

Music is something else I can't live without. I am able to love a song for its melody, but it is the lyrics that really stand out. If I can relate to the words, I will listen over and over again. I find comfort in this the same way I do in writing.

I care deeply about my friends and family, and I fear I do not convey this to them enough. When I hurt someone I love, I torture myself over my mistake for weeks before I can let it go. I am not sure if this is a character flaw or an asset, this level of concern.

I am generally serious and like to plan things out but I can have unexpected spontaneous moments, too. The older I get, the better I am at being unafraid to say what is on my mind or do what feels right in the moment without over-thinking the consequences.

My happiness is not a constant emotion, but rather a feeling that builds from little positive experiences. More and more, I realize these fleeting, blissful minutes in time are the things I will actually remember years later, not the stress and agony.

There are a few experiences that can always calm me and make me feel small again. They include looking at the stars, being near the ocean, spending time with someone who has known me for decades, and walking barefoot on the grass.

I love jeans and flip flops, but sometimes dresses are fun. I feel naked without a necklace on. I like my hair long and I don't see that changing anytime soon. I seem to view myself as about ten years younger than I actually am. I think this is a healthy form of denial.

I believe most bad days can be fixed by hearing, "I love you," eating french fries, watching a good movie, getting my toes painted or buying new lip gloss.

I like to give generously. I have the tendency to donate to a good cause or buy a worthy teacher a nice gift before I put gas in my own car.

In the past, aside from writing, I have worked in childcare and medical records, as well as a few other "odds and ends." I am not very career-oriented, but I do set my goals high just the same. In the future I would like to do more with my interest and experiences in the special needs community, whether that be through more writing or another form of support.

Now I am feeling a little uncomfortable dwelling so much on myself. Want to hear about my kids?!