When we discussed starting a blog for our website, I immediately asked if the first one could focus on parenting. Carol, Theresa, and I have always agreed that the joys and trials of parenting a child with communication difficulties pulsate in our waiting room. A knowing nod, a piece of advice, a referral, and a commiserating remark: sometimes that’s all we need to get through a difficult week of parenting. In a world where we often feel judged, and even isolated, the waiting room can be not only a safe zone, but also a place to refresh our resources.
As most of you know, I also have a “child” with a language disability. I asked her permission to discuss our lives before writing this column. She is, after all, a young adult, and she deserves the right to keep her life private. Nevertheless, she is a very happy young lady, and she felt that by sharing some of these insights, we might be able to bring joy to some other people as well.
Keep in mind, that some people, my co-workers for example, seem to glean these traits without this particular type of parenting experience, but I’m the type of person who obviously needed my daughter’s help. As a result, here are my top five lessons that I’ve learned from parenting my child:
1. Empathy. To be fair, I was always an empathetic person. How could you enter this field and continue to love it without compassion? However, I think my empathy started with another important person in my life with learning disabilities: my brother. He is a mere 13 months younger than me, and he has dyslexia. Unfortunately, we went to school in the dark ages when he was not labeled LD, but “lazy”, “stupid”, and “a troublemaker”. I always knew how smart and wonderful he really was, and it broke my heart to see him struggle over things that came easy to me. Today, my brother is a successful businessman who is both the toughest and most generous man I know. Nevertheless, when you hold your own child as she cries over homework, or exclusion, or even the pain of surgery, it brings empathy to a whole new level. Suddenly, you listen more closely to others; you care more about other people’s problems; you’re just nicer.
2. Patience. Being a mother to any child can teach you patience, but as your child with LD falls apart because they can’t find the words to express themselves, because they are over-stimulated, or because their routine has been suddenly changed, you know what patience truly is. True patience is not blaming the child for not understanding the material, but altering the delivery of the information twenty different ways until they “get” it. Patience is starting every single school year calmly discussing your child’s strengths and needs to a whole new set of teachers. Patience is throwing away a copy of your local newspaper every time they run an opinion column on the unnecessary expense of special education.
3. Strength: You cannot raise a child with special needs and be a doormat. You climb a mountain every day, go to bed at night, wake up and do it again. You know what is best for your child, and you must have the strength to deal with those who think they know better. You must have the strength to deal with those who judge you and your child. You must have the strength to carry through, consistently, with whatever educational goal and plan you are currently implementing. You must have the strength to fight the system and create solutions. Finally, having strength requires that you take care of yourself. Don’t feel guilty about taking time for daily walks; going to yoga; spending money on organic, locally grown, in season food; getting eight hours of sleep; and finding time to be alone with your significant other. I not only need the strength for my daughter today, but I need to be around for her for a very long time.
4. Organization. I would be lost without my planner. I color code my family’s activities and appointments. I record the books I want to read, the purchases I must make, and my daily to-do lists. I also have my daughter’s medical and educational life in files. I keep copies of all correspondence dealing with school, activities, her work, and social agencies. I keep track of deadlines, transportation, and social engagements. My son and my older daughter live in fear that if they stand still long enough, I will label them with my label maker. I operate our lives like a well-oiled machine (until I miss an appointment because it didn't get entered into said planner.) Effective organization also means organizing people: surrounding you and your child with persons who care, are supportive, and who will jump in when needed. We have learned the art of networking!
5. Unconditional love. Obviously, we love all of our children, but I thought it would be easier to take pride in the children who get good grades, who bring home awards, and who win games. Boy, was I wrong. I find myself bursting with the wonderful news of small victories and endearing character traits. Moreover, when we truly love our child with special needs through the tough times, we love others more easily, and we learn the art of forgiveness. We forgive those who don’t understand, but we also forgive ourselves. We cannot be perfect parents, but we have become better people.
A toast to parents everywhere who are just trying to make it through the day with their child's best interests in mind!
-LeeAnne Fura, MS, CCC/SLP
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