1 If I Knew Then What I Know NOW! A compilation of quotes from parents who when asked the question If you knew then what you know now, what would you share with others? they offered the following. On advocating for your child... I would have known I did not have to have all the answers. I simply needed to ask questions that lead me to the answer. After all, there is only one foolish question and that is the one not asked. I would have known early on that I was my child s best advocate. Others can provide information & support but I am the one that knows her intimately and will be with her through life. Everyone else can come and go. I would have asked for a copy of the policy stated by a planning committee member when the policy referenced was used to deny my child services needed for success. I would never ask the question; Can he/she participate? Instead, I would ask How can he/she participate? Once answered it is hard to deny the request. I would have known that the person I needed to change was not my son, but the people in our community. I would have ensured my child had a meaningful life not a meaningful program as I have learned that meaningful programs do not ensure meaningful lives. I would have been persistent in my effort to have my child participate in all school activities of their choosing. Utilizing the IEP planning process to address needed supports (modifications and accommodations) for participation. I would have read all documents and understood them before signing my name. Recognizing that the large print giveth and the small print taketh away. I would have focused on my child s strengths, nurtured and encouraged them. It is through these strengths that we are best able to support her needs. I would have realized early on that life skills are learned through experiencing life, NOT in a separate segregated classroom. There is great power in the natural, teachable moment.
2 On Assistive Technology (AT)... I would have known the magic of Velcro. This was a quick fix for many articles of clothing that had buttons and snaps. And when replaced with Velcro gave my daughter the tools she needed to accomplish dressing independently. I would have known that there is a difference in Assistive Technology (AT) Devices and Services and requested both. To simply provide AT devices without understanding their function is no different than building a house without a foundation it does not work. On behavior... I would have known that behavior of any kind is communication. Realizing the only consistent mode of communication for my son was his behavior. Interventions provided by myself or others caused his behaviors to become more frequent or creative depending on our response. They could be rewarding, encouraging the behavior to continue or frustrating, causing the behavior to become more creative. It was not until I looked at what was happening before the behavior occurred was I able to change the behavior presented. On expert advice... I would take the experts advice with a grain of salt, hold on to the dreams for my son, and do whatever it takes to ensure my son and my family enjoyed a normal, happy life. As it turned out, I learned to do these things pretty quickly, but it took a 180 degree shift in my perspectives and my actions to make it happen! Today, he s a successful college student and lives the life of his dreams! I would follow my motherly instincts and not let the professionals challenge or change my thoughts and opinions about my son or our goals. On disability labels... I would not have wasted so much time worrying about what label my child received. The label alone can not identify strengths, needs, expectations, or supports. For this you must get to know my child intimately; as only a mother could. On Medicaid Waiver Programs... I would have known that Medicaid Waiver Services were for any person, regardless of age, who has a disability not services just for adults. When my son turned 18, I called
3 to access services only to find out there was a 7-9 year wait. My advice SIGN UP NOW! On modifications and accommodations... I would have known that accommodations change how something is presented/measured and modifications change what is being presented/measured. To participate in the school choir one does not have to be able to read music. You simply need an audio tape of the songs before hand and a good memory. I would have known that the modification and accommodation form in my child s IEP was not a comprehensive form but a starting point for thoughtful planning. And that any modifications or accommodations identified by the committee to ensure my child s success could be added. I would have known that you don t have to know how to count money to make a purchase, you simply need to have a credit card or debit card and money in the account. On parent-to-parent support... The best information I received was from experts who have experience in the field of disability parents. The words expert and experience take on a whole new meaning when you talk with those who live with the day to-day adventures of life. I would have known that I did not have to travel the journey of parenting a child with a disability alone. There are many groups, resources, etc. To work on my own exhausting. To work with others EMPOWERING! On People First Language... I would have known that People First Language was not a fad, but a way in which language is used to promote dignity and respect. On possibilities... I would have known that possibilities for children, youth, and adults with disabilities are hindered only by attitude, imagination, creativity and commitment all human barriers that can be removed. I would never say the words won t or can t when talking about my daughter, she proves me wrong every time!
4 I would have known that removing possibilities for my child to take risk also removed opportunities for her to experience success. I would have realized that the dire predictions given to me about my children were based off labels and worse case scenarios. I would have never doubted that as long as we are working toward a goal, we will get there. I would have realized that "this too, shall pass. Nothing stays the same forever, we all grow and change. I would realize that there is always hope for a brighter future. I would have known what the phrase it takes longer, but a person with a developmental disability can learn meant. I've repeated that statement many times through the years, all the while hoping and praying it is true. But honestly, I'd begun to wonder. It seemed like we would go over and over and over certain skills or concepts, and it just didn't make any difference. MY child just didn't seem to be learning. Now that she's a teenager, she's beginning to make progress in areas I wasn't sure she ever would! It's amazing and reassuring, and it gives me the boost I've needed to try again. If I'd known years ago that "takes longer" can refer to many years and not just a few months, weeks or days, I might have been more patient, with myself and with my daughter. And I might've saved myself from all these gray hairs!!! I would have known that the only way a child doesn't grow and change and improve is if one does nothing. Doing nothing is the only thing that ensures that nothing will happen. I would have known that expectations for my child were greater than those without disabilities; use your in-side voice, keep your hands to yourself, eat with a fork, etc... If you question this thought, I encourage you to spend time in a school cafeteria or the hall ways; it s very enlightening. On relationships... I would have known that we all live interdependent lives and no one does everything independently - only what they are capable of. The rest of the time they know who to ask for help; and that in itself is independence! I would have known that loneliness can have a negative impact on your health and would have ensured my child had many opportunities to form relationships with others. To quote Judith Snow, Loneliness is the only real disability. I would have known that social skills could have been addressed within the IEP and developed goals and objectives for my child.
5 On recreation and leisure... I would have known that the educational day did not end when the bell rang and that natural learning opportunities experienced through extra-curricular activities are priceless and can not be replaced. I would have known the importance of recreation and leisure activities and the role they play in developing job skills. Self-confidence, interpersonal skills, working in a group, etc. These are great characteristics any good employee would demonstrate. On self-advocacy... I would have known the importance of teaching self-advocacy skills when my child was young. Setting goals, problem solving, making choices, making decisions and leadership qualities are skills everyone, regardless of age or ability should be taught. On the word special... I would have known that disability is a natural condition of the human experience not special. Special is just another term used to justify separate, segregated services and supports. On supplemental aids and services... I would have known that supplemental aids and services provided for or on behalf of my child could include staff development.
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