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.

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.