Patience is probably that one tool in the special needs parenting toolbox that we all strive for, but probably have the hardest time fully grasping. Why? Many reasons, honestly.
We all look at our children and want them to be able to do the same things the other children are doing. We want them to be participating like the other kids and being able to enjoy things in the same way that the others are. We become frustrated as parents for our children. Notice I am not saying ‘with our children’ but ‘for our children’. All of us, at one time or another, have become very frustrated, upset, or however you would want to describe it, at watching your child struggle to do something whether it be homework or play a game or event interact with others in ways that you see other kids doing. It is HARD to watch sometimes without feeling like the world is collapsing around you out of fear/concern/worry for your child.
Let me give you an example. The Boy Scout troop here at FSDB is a mixed troop – we have young men who are deaf or hard of hearing and we have young men who are blind or visually impaired. They do everything any other troop does, just with some accommodation for their sensory loss. A couple of years ago I had a very smart young man join the troop. He is blind. He only stayed with the troop about 3 months, then one day just stopped showing up. He is a day student (does not live in the dorms on campus, but lives locally with his family and attends the school). Dad had been bringing him and even volunteering with the troop. When I contacted the family to find out what was going on, mom told me that the issue was dad. Dad had become incredibly frustrated over watching his son try and do the knot tying work that all scouts do. Now I will tell you that yes, learning to tie different knots is difficult for a person who cannot see them, but no more so for a person with motor skill issues or for some of us who just can’t tie knots if our lives depended on it. Unfortunately, in this case, dad saw it as an issue with vision. It bothered him so much that the dad just could not come back, and as a result, this particular scout wound up dropping out of scouts.
You may ask what this dad was thinking, but if you are a parent of a child with special needs, you will probably understand. For myself, I think back not too many years ago to when my son Ian decided he wanted to run track. As many of you know, Ian is deaf and has motor skill issues. Well, at his first track meet, I remember sitting as far to the back and as far to one side as I could get in the stands. Not because I didn’t want to watch, but because I was terrified I was going to completely lose it in front of everyone. I didn’t, but I sure came close. I don’t know how to explain the mix of feelings, that were running – between pride of his accomplishment, to fear that he would fall, to overwhelming relief that he was able to run, especially since there was a not too distant time when we didn’t know if he would walk. Today, 3 years later, Ian is still running. His times have improved greatly from that first year, and now there is a student from the blind department here at FSDB who also has similar motor skill issues. The coach always arranges for them to run in the same heats in the 100 and 200 meter sprints. And do they compete with each other! And they are good friends. For both, it isn’t about winning (though they certainly like the bragging rights for that week), but about how much their times improve.
Our society is also very time-driven and to-do list driven. I’m sure all of you will agree that part of parenting a child with special needs is realizing that the clock moves differently for our families. Patience can be sorely tried as you watch the clock continue to move. Often, the simple logistics of going anywhere can take what would be a short trip and turn it in to a ½ a day. It is hard not to become frustrated as you watch the clock move. When that starts happening it is hard to just step back and wait. When Ian was little and we were going somewhere, we used to plan our day, then either take what we planned on doing and cut it in ½, or we doubled the amount of time we would need. We just knew that was our life. Still it is hard. Stop watching what your friends are doing or what the Joneses down the street are doing. Step back and think about what you are doing and how that is working for you and your family. This is one of those cases where, for me, I try to remember what Lewis Carroll once wrote, that “One of the secrets of life is that all that is really worth the doing is what we do for others”. Maybe you don’t get everything done that you want, but enjoy doing what you can and help the rest of the family enjoy it and appreciate it. That will mean more than the extra stop you didn’t have time to make.
Then there are the meetings and paperwork, trying to get to doctor’s visits or to school for an IEP or other meeting, and often having the sensation of being a gerbil on a giant wheel, running and running, while never getting anywhere, and you ask yourself, ‘where is the progress?’ and ‘how do we ever get to the point where it feels like some of this is really making a difference?’ In many ways, this kind of patience is often the hardest because it is one that we as parents feel we have the least amount of impact in the process.
So often in these situations we have to trust the opinions of others that we only know from school or from a meeting or meetings that happen a couple of times a year. You work with the school, for instance, expecting to see progress and (in your mind) none results. A very hard situation to be patient in…. I know, I’ve been there. When Ian was in elementary school – first grade, as a matter of fact - I will never forget talking to his Occupational Therapist and expressing how frustrated and how my level of patience had worn down. I was not seeing Ian progress with the academics, and wanted to see it happen NOW. As we talked, she said something that stuck with me. To paraphrase it, she told me that he had made a lot of progress. And yes, it was very hard to see, and no, most of it was not academic. But, she and the Physical Therapist both were at a point where they were happy, because they believed that Ian was finally, physically, at a point where his body was ready to learn. Basically, all the years at that point, in preschool and early intervention, etc. had been used to get Ian to a point where he was controlling his body and not the other way around. Now, finally, we were at a point where he could begin to really take in the education. You know what, they were right. They did know what they were doing, and were working in Ian’s best interest. It wasn’t until after the fact, that looking back, I was able to see the progress he really was making and how much that meant as we have moved down the road of his life.
Finally, and especially for the parents of younger children, there is the desire for answers and the wish to know the future for our child. We all want someone to say us that we can stop worrying because this is what WILL happen in the future, that the choices we are making are the right ones, and everything will be ok. We want the issues solved and resolutions to questions now, when the answer may take 2 or more decades to fully answer. Talk about grinding patience into dust under the heel of a boot!
Every year I will talk to several parents who are just at their wits’ end with worry because they just want to know everything will be ok for their child when he/she becomes an adult. Unfortunately, there is no way to know the future. There is no answer available now for what the future truly holds. That is hard to accept for many of us, simply because we hope and wish and want to ensure that our children will be able to have decent lives. Yet, patience is required. Try to work on what you can now, don’t fret over past mistakes because you can’t change them, and have a flexible plan for the future. I will tell you that if you asked me when our son was 4 if we would be where we are at 17, I would tell you that my answer would not have been even remotely close to right. What the future holds is something we cannot tell. All we can do is have patience, continue to push ahead, and do our best as parents to help our children arrive at adulthood. Remember what William Wordsworth said, “Life is divided into three terms - that which was, which is, and which will be. Let us learn from the past to profit by the present, and from the present to live better in the future.” But to follow that advice, you must have patience.
So, on many levels and on a regular basis, our patience is tested again and again. With such pressure on patience, it is hard not to expect our patience to be weakened or even to collapse all together at times. Yet, as we talked about earlier, patience is one of the best tools a parent has, and one that when held on to and used appropriately, can have incredible benefits in raising a child with special needs. Don’t let your patience be overwhelmed by despair or frustration. You have time, your child has time. Have the courage to have patience and to use it well. Remember:
“Our greatest foes, and whom we must chiefly combat, are within.”
- Miguel de Cervantes
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