As a mom of a special needs child, I spend a fair amount of time telling my story and advocating for our son.
I am truly lucky that I have an amazing support network that, for the most part, lets me go off on tangents and listens and supports me, even if they don’t understand all the acronyms I throw their way.
However, out of politeness or maybe because I never stop talking, I am rarely asked questions about what it’s like to be a part of a special needs family. I decided why not ask my friends, family, and my fellow writers for the BurlingtonVT Moms Blog what they always wanted to know but might have been too afraid to ask? I received so many thoughtful questions and I can’t wait to share my answers.
What should we tell our kids if they ask (loudly) about a potentially special needs kid?
If your child is right next to you, right now is the perfect time to have a conversation. If not, pull them over to you to have a private conversation. Children are naturally curious and if they are asking why a child is in a wheelchair, wears braces, looks different, or uses any medical aids, simply explain why. Your answer can be as simple as,
Johnny uses a wheelchair to help him move around because his legs can’t help his body move.
If the question reflects behavior and how things can sometimes look different for special needs kids (for example, my son receives play cash that allows for him to buy the privilege of eating candy in the classroom to reinforce his positive behavior) I love the line my son’s kindergarten teacher used which is,
Everyone’s here to work on something.
This line is a brilliant way of summarizing that we all have strengths and weakness and that everyone is working on something.
If we see a special needs mom having a hard time with her child, is there any way we can offer to help without sounding condescending?
Yes! The biggest thing that you can do is really simple, don’t stare. We see staring, we feel it, and it hurts us. There is nothing worse than dealing with your child’s behavior while feeling like a stranger is judging you. We also do not need unsolicited parenting advice. Instead, if the mom is still around after the behavior, try coming over and just saying hello. Start a conversation about the weather, the Real Housewives, or whatever beside what just happened. Sometimes it’s nice to have a little distraction.
Now, if you see a situation where safety is a concern, please do ask how you can help. I was once on a soccer field alone, while my son was having a meltdown, and I had my younger daughter, folding chairs, and soccer equipment to manage. There was no way that I could safely get everyone and everything into my car. A kind stranger came over and said, “Do you need a hand?” She helped me guide my younger child, while I helped my older child, and everyone made it safely to the car. I was so thankful for an extra set of hands during a time of need.
Do you feel socially isolated and if so, how do you combat that?
In the beginning, when I first started to identify as a special needs mom, I felt socially isolated. My son was diagnosed on the autism spectrum at the age of two and a half and started intense in-home therapy at the age of three. From the ages of three to five, we were very isolated. While my friend’s children were starting preschool, t-ball, and creating friendships all of their own, we were at in-home therapy, residential therapy, or in a doctor’s waiting room. If you have a friend who’s child is in this age range, please extend your friendship, she needs a friend. Ask her to go for coffee, come over to her house with lunch, or go for a walk together.
As my son gained more skills, I was able to start a pre-sports program with the Vermont Special Olympics that allowed us to get out and create new friendships for our family. We found Kayla’s Directory which provides many social opportunities for special needs children and families to connect with each other. I also have joined some amazing Facebook groups for special needs moms which really helps with social isolation. We are very fortunate to have a great group of friends who have accepted our son after his diagnosis and I am so grateful to have them in our lives.
How can medical care providers be most supportive of special needs parents?
My favorite medical care providers are providers who meet us where we are, are great listeners, and who have a sense of humor. I would say in the beginning that it is essential to listen to what is the hardest for the family, whether it be transitions, eating, or bedtime routines. Whatever is most important for the family, work on that first. For us, it was transitioning between activities. Our team created a timer program that has greatly eased daily transitions for our family. It is easy to get caught up in everything that needs to be helped and have a program become spread out, but I have found it much more useful to keep the focus small and master skills before moving to the next task.
What do you wish you could tell others, but don’t usually get the chance?
I wish everyone knew that my day to day life takes a lot of patience. I can’t tell you the number of times that by the time I get to work at 7:30 AM I am already drained. I wish that people could see all the small extra things that occur each day that add a lot to a special needs parent’s plate. From scheduling appointments, advocating for services, reviewing IEPs, calling insurance companies, managing behaviors, and balancing everything else, it is overwhelming at times.
Should we have our child offer to help if it looks like your special needs child needs help or should your child be given the chance first to try themselves and have their own independence?
Give the child with the disability a chance to try the activity themselves and have their own independence. While it is awesome when peers want to help, the reality is that peers will not always be around later in life. It is important that people with disabilities are given the space to learn how to be independent without others jumping in. Now, if you see where someone is truly struggling due to environmental conditions it is perfectly acceptable to lend a helping hand.
In what ways do you find your day-to-day routines are different than those of mothers to neurotypical children?
My day to day routine is very different than that of a mother to a neurotypically developing child. My son is eight but is cognitively around the age of five. I help him physically with the skills of dressing and all personal hygiene. My son does not yet have the skills to remember what is needed for school each day, so I keep track of returning library books, making sure he has shoes for PE, and choosing items for share. We also have to balance his rigidity around routines with learning the flexibility needed to manage daily life. This can be extremely challenging when he creates his plan and it can’t be met to his exact requirements. We are currently working on expanding his vocabulary and communication skills to help with his rigidity and expressing his feelings about plan changes.
I want to host a playdate for a child with special needs, what should I ask the parent?
First, playdate offers for our special needs children are few and far between, so if we greet your invitation with overwhelming excitement, please don’t be frightened. Ask where would be the best place to have a playdate, offer your house but be open to having the playdate happen at their house or at an outside location. Ask the parents’ comfort level around dropping their child off for the playdate or if they would like to be present- and be open to either option. Also, ask if there are any activities or games that their child enjoys that you can set up during the playdate. Last, ask if the child has any dietary restrictions. Overall, playdates that are set up between two peers that are friends are the best and are so needed for our children.