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.