Nov. 10, 2021
Our next area of focus-Family and Spiritual-is the only area that is even more emotionally charged than finance. I like to think of special needs parenthood as comparable to typical parenthood in the way that extreme sports are comparable to typical sports. Both are difficult and require a lot of practice and skill, but extreme sports are much riskier pushing to find the edge of what is possible. If something is a hardship when parenting typical children, that difficulty is multiplied for special needs parents. If the hardest part of parenting is when your children grow up, then it takes a surreal amount of effort to survive a special needs child becoming an adult. Having parented both a typical child and a child with autism, I can attest to the difference. I don’t remember the first “conversation” that I had with my typical son, but the very thought of the first “conversation” that I had with my child with autism still brings a tear to my eye. Because I had to fight harder for every milestone and had to accept that some milestones will not come in this lifetime, each milestone means more. The pain and joy are both heightened to an extreme level. Every special need parent has their “war stories”, but universally they live in fear of their child having to face the world without them by their side. Moving out of the family home often seems impossible. Our typical son left home at the age of 19 to do missionary work in Southern California. It was hard knowing that we would not see him in person for two years, but it was bearable. He emailed once a week and we sent care packages and the two years flew by. A year before he left, our son with autism moved to a house with roommates that was about 1.5 miles from our family home. I was in a full-blown panic attack every time I went to the house to prep it for his move in date. I had to develop a mantra and chant it the entire way to the house just to be able to breathe. It took every coping strategy in my toolbox to face the fear of letting him move out despite a decade of preparing myself for this eventuality by allowing him to go to overnight camp, travel with others, stay at a care providers house, etc. Even remembering it sends a chill through me. After he moved out, I was on an emotional roller coaster for at least six months. Every time we did something that we would not have been able to do if he lived with us, I was so grateful for the opportunity and then the guilt would come for feeling grateful. Everyday I had to stop myself from spiraling down the “rabbit hole” of thinking he was being abused or hurt in some way. On the other hand, he loved it, just like every other 19-year-old. Within a few months, he would waive his hand in my face and say “bye” if I came to his house, obviously communicating that he did not want me in his “bachelor pad”. We were blessed to have well qualified care providers who had known him for years and that made success possible.
A mother on the brink of a full-blown breakdown and an adult child who has the communication skills of a typical two-year-old but loves his independence. Is this a relationship that you want to get in the middle of as a care provider? No, but that is where care providers and the agencies they work for end up. Right in the middle of one of the most emotionally charged relationships on the planet – an extreme parent-adult child relationship fraught with some of the most profound obstacles that you can imagine. The first step to dealing with this effectively is acknowledging that it exists and recognizing the challenges to this family relationship.