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.

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.

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.

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.

Sincerely,
Debbie at age 36

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.

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.

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.