Last week, Brian and I had the opportunity to join Jim on his business trip to Dallas. It was a wonderful adventure on many fronts; we explored the Dallas Zoo, Dallas Acquarium, and the stockyards in Fort Worth. The longhorn cattle were something to behold and the friendly Texans who we encountered during each of these experiences couldn’t have been nicer! I confess that I was a bit suspect of the locals southern hospitality initially (must be a Jersey thing, lol), but it didn’t take long to realize that it was truly genuine. We were welcomed wherever we went and the reception for Brian each time was fit for a king!
We also mixed a bit of business with pleasure by touring one of the special needs facilities for disabled adults, as well as one of the resource centers in the Dallas area for Down syndrome. These visits were well worth our time and provided us with insights as to what resources are currently available. Like many special needs parents, we think about our son’s adult years a lot, specifically, what is going to happen after his formal education is over? Where will Brian go? What will he be doing? We pray that he will not be sitting home doing nothing. Brian still has 6 years of school left, but that time will pass quickly, so it’s never too early to explore and research potential options. It is a faith walk for sure, as there are so many unanswered questions at the moment…
During our visit in Dallas last week, Brian and I also had the chance to interface with many typical parents and their kids during our visits at the local mall, zoo, and acquarium. These families were quite curious about Brian and genuinely interested in him. It was a disarming experience at first, but one I grew to like very quickly. We received very few stares of disdain, and only one “eye roll” when Brian waved to a woman and her child during our time in the Dallas Galleria Mall. There were also a lot of “Y’all are amazing parents”, “Brian is an angel”, ” Y’all are so special and blessed”, etc. I politely responded with a thank you, but at times internally rolled my eyes too. I have no doubt of the sincerity behind these compliments, and I’m sure I would have said them myself if Brian had been a typical child. But our reality is very different. Brian is certainly not an angel all of the time and some days feel more like a curse than a blessing. Brian is also not always accepted for who he is in the community. I think a lot of that has to do with misinformation and a lack of communication. Sometimes people only see a “snapshot” of who Brian is, then make assumptions about him that are not accurate. As a former educator, it is natural for me to teach and inform others about my son, when the opportunity presents itself, IF I feel the person is receptive. While the greatest support system and understanding comes from other special families, special parents also want relationships with extended family and typical families. I believe these relationships can flourish when we “speak our truth” about our special journey with our disabled children. While there are many specific things that each special needs parent would like for their extended family and friends to know about their disabled child, the following is true for most special needs families across the board:
1. We don’t want pity because we have a disabled child. Compassion and understanding are much better alternatives.
2. Staring at our child is rude and makes us uncomfortable and annoyed.
3. If you are not sure how to interact with our children, please ask! Your preconceived notions about disabilities may be pleasantly altered when you see what our kids are capable of!
4. We appreciate when our children are invited to your social gatherings. They may or may not be able to attend, but the point is, our kids are also included.
5. Similar to #4, we special parents also appreciate invitations to socialize with both special and neurotypical parents. Raising a disabled child can often be an isolating, lonely experience. It helps to connect with other adults.
6. Please don’t minimize our challenging situations with well-intentioned platitudes- it can sound patronizing!
7. Please don’t judge our parenting style with our children, nor offer advice unless we specifically ask for it.
8. If you are looking for a gift idea to give to a special family, your time would be most welcomed! Time together with our children or time just with our children, so that we parents can go out for a meal or to a movie for a few hours, would be greatly appreciated!
9. If you are looking for gift ideas for our kids, please ask! My son doesn’t like toys, but he loves books, music, and swimming.
10. Our parenting experiences may be quite different, but fundamentally, we are just like you: we love our children too and also want them to be healthy and happy.
11. We worry greatly about who will care for our children later on when we are no longer here. It’s the Damocles sword that hangs over our heads daily…😞
12. We may appear strong, but we struggle both physically and mentally with the demanding, often repetitive care, of our kids.
13. Advocating for our children and managing every aspect of their lives is a lifetime commitment that is often exhausting.
14. We will go to any lengths and/or take any necessary measures to ensure that our children are afforded opportunities to learn and engage in life experiences
15. The “Highs are Higher” and the “Lows are Lower” in our world. Little steps are HUGE accomplishments, while setbacks, big or small, are felt more acutely.
16. We love our kids with a fierce intensity- we are their protectors and advocates. We are the “voice” for our children and always will be throughout their entire lifetimes.
17. We are not “super parents”, rather, we are ordinary parents who have been placed in extraordinary circumstances.
18. Our kids show us how to live in the moment, one of the best gifts my son has given to me.
19 Being the parent of a disabled son has made me a more mature person, has taught me perseverance, and continues to teach me patience.
20. You have 3 choices when you have a child with special needs: 1. you keep going, 2. you give up, or 3. you take breaks when you can’t keep going and you want to give up. Self care is not a luxury, but rather an absolute necessity .
That’s all, Folks, until next time- thanks for reading! 😊
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