1) 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.
2) It takes daily practice and dedication.
So building on the first step, realize that patience is key when it comes to the daily things. The skills that might come easy to typical children don't to special needs children. I still remember when my daughter was a toddler, and I wasn't sure what her disability was, and was even denying she had one. We had a little playgroup at the park once a week, and I would see kids her age climbing the ladder and going down the slide, with smiles on their faces. My daughter wanted nothing to do with those things, and was even fearful of going on the playground. So near our house there was a little park, and I would take her there every day and teach her how to climb the ladder. She physically could not make her legs and arms work to do this, though typical children learn on their own. I would put one hand on her leg, another on her arm, and guide her from step to step. This took months of practice, but it paid off, and she learned what many would consider a very basic skill. But to me, it was even more rewarding knowing our daily practice was successful.
Special needs children need repetitive, daily practice to learn skills. The way I see it, their brains are wired differently, and it's our job as parents to help them connect the little wires to the right places. And this will only happen through constant, monotonous, continuous practice. It can feel draining thinking about how far they still have to go at times, but again, keep going. Each practice session to learn a skill is like a new step on the ladder for their development, and eventually they will get to the top of that ladder, with you by their side.
3) 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.
4) 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.
5) Others will notice the progress in your child more than you. Believe them.
My youngest child was born with an isolated cleft palate. Even though he was born at a healthy 8lb 15oz, his inability to feed like a normal baby caused his weight and height percentiles to slowly taper down to just 1% right before his surgery. He was a tiny thing. But after the surgery, he quickly gained the weight back, and then began talking right after age 1, and then began losing speech because his ear tubes fell out. He then fell a little bit behind and started speech therapy and early intervention classes to help catch up. And during this time of ups and downs, I wasn't really noticing his progress because I was so worn out by chasing him around and basically keeping him alive. But others noticed his speech improving, and his weight climbing steadily, and would comment on this to me.
I find it interesting when we see family members that we haven't seen in a while and they remark that our children look so grown up. Of course I then look at my children and think, hmm, maybe they're right, but I don't see it! The same is true when measuring progress in special needs children. Family members will notice improvements after a long period of time, and your first reaction will be to disagree. But don't do that. Just believe them. You can't see it because in the thick of all the appointments, IEPs, tantrums, giving baths, brushing teeth, getting them dressed, it is easy to be blind to the progress your child is making. Many times, the stress of parenting overshadows the little milestones your child is reaching. But in those good moments, where you feel like you can do this parenting special children thing, you will notice, and you will feel rewarded.
6) It means you can't quit--this is your job.
If you give up on the daily practice, the skills will be lost, and you will be starting over again. One skill that my daughter just mastered is showering. On and off over the years, we have worked on it together. We would make some progress, but then I would grow tired of doing it, impatient, and stop for a while. Each time we went back to it, it was like we were starting over, trying to connect those little wires in her brain again. But earlier this year, I became determined to conquer this skill, so we went at it hard, and she was successful. But we had help--it wasn't just me.
I've never worked full-time outside the home. Mothering has been my job from day one. And each of my three children have been born with unique challenges that have tested me and will continue to test me, that have exposed to me my weaknesses, that have brought me to my knees. There have been days where I wished that I could just walk out that door, that I could change my circumstances. But I can't. This is the job I have been given as a mom, and these kids are depending on me. But it doesn't mean I have to do it alone. In addition to my husband, I have found so many resources. In-home services that provide therapy, respite workers that watch my children, friends that I can lean on for support, teachers that have done everything to help my children, aides that have been life-changing. Without them, I just might have walked out that door, long ago. If you feel like you are headed that way, ask around for help. And be patient, you can do this. Being a parent isn't just a full-time job, it's a lifetime job, and you have the right skills for the job.
7) It will either make you a better person, or a bitter person.
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.
I have a picture of our family when my daughter was only 19 months old, and I keep it on my bathroom mirror so I can look at it every day. At this age, she looked so cute and innocent. Someone had told me she thought my daughter had autism, and I had just begun exploring the idea, though at the same time I was trying to push it out of my mind. Because I didn't really know yet, and because I had no idea what the future held for our family, I was much more positive. Now, 10 years later, I look at that picture and think, this is where it all started. This is where I started on my better path, and strayed to the bitter path over time. I think I am wavering between both, but really striving to stay on the better one. It is possible to stay there, as long as we are patient and positive. 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.
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