Tuesday, September 22, 2015

Why Patience is Essential to Raising Special Needs Children

Perhaps the first attribute I discovered that I lacked after become a mother was patience. Raising a special needs child means waiting, a long time, to see any progress. And at the same time, it means learning to control your anger or frustration, trusting that things will get better. Though I am still learning how to be patient, I wanted to share some ways that I have begun developing this crucial characteristic:

Realize that progress will not happen overnight.

Over the years, I have delved into many different therapies for my daughter on the autism spectrum. Vision therapy was one that intrigued me about 5 years ago, and though it was costly, and very time intensive, I went for it anyway. I would take her out there, the doctor would show us what we needed to do, and send us home with a packet full of stuff to work on before the next week. So we'd try, really hard, to incorporate this therapy into the others she was doing, and after a few months of not really seeing any progress, and feeling defeated by my inability to be dedicated to this home program, we quit. I never saw the progress that could have resulted because in addition to giving up, I also had the attitude of, "This isn't going to do anything for her. Why am I wasting my time?" I never gave it enough time to show results. I wanted the progress to be quicker, and I wasn't willing to put in the time to see it. So I threw in the towel.

Raising special needs children is a process, a commitment. You will not see amazing things happen right away. It's not like curing your child of a common illness where you know the end will come. For special children, the end is indefinite, undetermined. And because of this, you will feel weighed down by lots of behaviors and overwhelmed by lots of therapy appointments. Just do the ones you think will help your child (and you will know, I promise), and be dedicated to them, for the long haul. You will be able to look back on the many years of speech or occupational or physical therapy and see what a difference it has made. If you give up, you will never know how far they could have gone. Be patient, keep going, and don't throw in the towel.

Don't compare your child to others.

This is very easy to do, even now that my daughter is almost 12. One skill that we've been working on for years now is swimming. She is still deathly afraid of swimming in a deep pool, and because swimming isn't typically something you can practice all year, she loses the progress she makes each summer and it feels like we are starting over. We felt this again as we started swim lessons a few weeks ago. And I have to admit, looking out at all the kids swimming independently in their group classes, and then seeing my daughter with her private teacher, still struggling to just put her face in the water, was a little disheartening. But I tried to focus on the progress she made during those two weeks and not even care what others were doing. After all, she's only going to go as far as she is comfortable doing--I can't force progress--it's going to happen naturally. And for her, she did hard things. But if I were to compare her to the other, much younger children, I would always feel defeated.

As parents, we want to be proud of our children. We want to celebrate the milestones and achievements they make. But with a special needs child, most of those milestones either don't exist or come much later. This can rob parents of the joy and pride they feel in raising children. But if we watch patiently, and carefully, we will be able to see the progress of our child, just our child. And really, that's all that matters. You will never be a happy parent if you are comparing your special needs child to other children, or even other special needs children, for that matter. Each child is born with a unique potential, and as parents, all we have to worry about is helping them get there.

It means you will have to make lots of sacrifices.

If I were to add up the many hours I've spent on the phone advocating for my daughter, or writing emails or letters for IEP meetings, or driving her to different therapies, the number would be staggering. Just when I thought we'd gotten through one tough hurdle, whether it be for school or a medical issue, and we could finally take a breath, another one would pop up. And this pattern has continued and always will, because my daughter will always have needs, and I can't give up on being a parent. She is depending on me to help her achieve, and I am helping her become as independent as she can be. I have never regretted the many countless hours I've spent on her behalf, because she is worth it. Now this doesn't mean I don't make time for myself, because that is important. And if I don't get it, I will most definitely lose my patience more during the stressful times. But it means that if there's a problem, I am willing to sacrifice whatever time, hobbies, interests, or pursuits in order to solve it. Nothing is more important than that.

No one really likes the word sacrifice, but being a parent is all about it. And because special needs children need lots of extra help, parents will have to sacrifice their time and interests in raising them. Ezra Taft Benson said, "We love what we sacrifice for, and we sacrifice for what we love." We love our children, regardless of their challenges. We are willing to do anything to help reach their goals and succeed as much as possible. It all comes from love--we do it without second-guessing because we love our children.

When you find out your child has a diagnosis or disability, there are two paths you can take: the better path, or the bitter path. You might travel down the better path for a while, feeling confident in your abilities, and suddenly find yourself feeling overwhelmed by it all, and start trudging down the bitter path. I have been down both, and found that the bitter path is much harder to get off of. Once you are trapped in bitterness, it's hard to go back to that "better" person. I know that raising special children is always challenging, but challenges really are to help us discover how strong we are. Staying on the better path seems easy in the beginning, but as the years go by, you start to feel bitter, because you feel like maybe all this work and effort isn't worth it. What it comes down to is your patience is gone, your ability to endure. And so you have to dig deep, to find that strength again, so you can keep going.

Raising special needs children has been an adventure, a blessing in disguise. And I will keep moving along, patiently, because of the love I feel for my children, and the love they have for me.

1 comment:

  1. My son and daughter are both special needs children. They suffer from a genetic condition called I-Cell disease and they are affected both mentally and physically. Unfortunately, we lost our daughter last year to this horrific disease. I know everything you are going through and can connect you to other special needs parents also. Just let me know.

    Brendon Hudgins @ MedCare Pediatric