The overwhelming grief that poured over me when our son was a newborn diagnosed with hemophilia had mostly to do with the future. There was the death of dreams. Fear of what might happen to him ripped at my heart. And the discouraging comments that came from others leveled me: "He will never play football;" "He had better have a good job or he'll go broke paying for health care;" "Don't expect him to ski like your husband;" "Trampolines are definitely a no-no for him!" The wet blanket of perceived limitations thrown over me by medical professionals and others threatened to suffocate me.
When our youngest was diagnosed with her autism spectrum issues, I found myself with even worst angst. Unable to use medication to assist her because of allergic reactions, I sometimes wondered if I would be visiting her in a jail cell some day. I could not perceive how such a dysregulated child could learn and exercise self-control. There were no assumptions on my part of what sort of worker she would be.
Thank God that all the naysayers were fools; our children were far more capable than we could have imagined; the future looks brighter than ever for them! There has never been a better time in history for our children with chronic illnesses and disabilities to be alive. While we still have miles to go and mountains to climb in the world of special needs, the options today are better than ever before.
If I had to tell you only ONE question to explore with your challenged child, it would be, "What do you want this to look like?" My eldest child was extremely helpful to me in helping my other children because she knew what she wanted life to look like after high school. Her desire was to go on to a private, local college with small class sizes, pursuing a degree in communications. Having a clear picture of what she wanted helped immensely in beginning our quest for options.
While our children may have certain constraints on their abilities to understand or verbalize their dreams for the future, we parents need to meet them on their own level. The minute a mother like me makes certain assumptions, we find ourselves in conflict and trouble. Think possibilities for your child! Don't be afraid of your child getting their hopes up only to have them deeply disappointed later. Do you best to help them make it happen instead!
I was delightfully surprised at the many post-secondary options available to children of all abilities. For starters, the ADA extends to the college setting, so accommodations must be made in accordance with Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990. This expands the possibilities for our children in amazing ways! Physical challenges, psychological issues, and learning difficulties all fall under this sort of umbrella.
Of course, some universities are better at these adaptations than others. For example, the University of Wisconsin - Whitewater is well-known for its excellence in inclusion. When we chat with other parents who are just a step or two ahead of us on this journey, we can better learn in what direction to guide our kids.
A child with more profound cognitive delays, behavioral difficulties, and lack of speech might not be headed to the typical university. However, that doesn't mean that there are not INCREDIBLE opportunities for them. Near our home in Wisconsin, places like Shepherd's College and Wisconsin Independent Learning College are offering a bright hope to my friends' children by teaching them basic life skills, featuring programs that get them working in jobs such as culinary arts, technology, and horticulture, and one even offering on-campus living. Wow! To see their kids beam with the pride and self-confidence they have gained through these educational communities ignites the heart!
Online college is another opportunity for students of nearly every ability level. Self-paced learning can help our kids reach their potential in a setting that is most amenable to them. The Accredited Online Colleges has an extremely helpful Guide for Online Colleges & Disabilities to assist in sifting through rights and best ways to select an online facility that meets goals.
While the thought of paying for such higher-learning might seem daunting, there are also myriad funding sources as well. The new ABLE accounts give us the ability to now save for our children in a tax-free manner that does not threaten eligibility for government benefits. (See my previous post TRANSITIONS TO ADULTHOOD: ABLE Accounts.) Grandparents, friends, and relatives can help our children by adding funds to those accounts. State and federal grants also assist with higher education costs for families on a sliding scale, based upon our financial position. In addition, families like mine are also blessed beyond merit or community scholarships with scholarships directed towards specific diagnoses or those with disabilities.
Every child may not desire to pursue further education past their high school years. There's even great news for these kids! Each individual state has established a department that addresses vocational and rehabilitation services. This assures that our kids may find meaningful work to the best of their ability level. (See TRANSITIONS TO ADULTHOOD - 4 Tips on That First Job.)
Not matter what the choice, there ARE possibilities for our children. Parents like me no longer have to acquiesce to the dread of all those limitations spoken over our beautiful sons and daughters. The future isn't necessarily a closed door.
As for our household, I spend every day encouraging my kids towards their goals. My eldest is already in college near a terrific medical facility. The next wants to go to college for accounting. And to my delight, the youngest wants to attend technical school for a job in law enforcement. It may not be an easy journey, but like the Proverbs 31 woman, I can now laugh at the days to come.
PRAY: Abba Father, thank You for caring about our children more than we ever could. Thank You for more opportunities for them in life than there have ever been before. Holy Spirit, fill us with Your wisdom and discernment as we explore options for our kids beyond high school. Go with them into adulthood, and shine Your light through their remarkable lives.
~ Barb Dittrich