My husband and I have been super lucky when it comes to our family and having kids with special needs. We both each have cousins who are diagnosed with autism, so most of our family members were already at least slightly familiar with it. They’ve all been super supportive and treat our children with such love and care. I feel truly blessed in this area of my life.
I’ve heard my fair share of horror stories though! In light of what I’ve experienced first hand and what my friends have told me about their families reactions and support (or lack there of), this one goes out to all the family members of individuals with special needs. I want to help you out and give you a few things that you can do to be that shining star family member that your loved one brags to all their special needs parent friends about, not the one that ends up playing the lead role in another horror story that we all wish was just fiction.
First when someone in your family tells you that they or their child has a special need, don’t make any off the cuff remarks based on what you know (or think you know) about autism or whatever other diagnosis it may be. Pay attention to the person who is telling you this information and try to see the reaction that they need.
Do they seem sad?
Give them a hug or a reassuring pat on the arm or shoulder and tell them that you are there for them, but try not to use any blank “Everything will be okay.” statement.
Do they seem confident and matter of fact about it?
Then tell them you admire their strength and ask them what you can do to be supportive or helpful.
Don’t make it about how it will affect you and definitely none of that “They just need discipline” or “They don’t seem like they blah blah blah” crap. It’s not helpful and no one wants to hear it. Not to sounds harsh, but it’s the truth. If someone is telling you that they found out from a DOCTOR that their child has a special needs, then they have it. Your opinion on how to “correct the problem” or how they “seem” to you is not what they need to hear and doesn’t change the facts. I once had someone in an elevator tell me that my daughter just needed to be spanked and follow it up with “What ever happened to when people were just strange? Why do we feel the need to label everything now?”. Well what happened was we became more medically advanced, realized the term “strange” was offensive and started getting people the help that they need. Ugh! Anyway, what I’m saying is, don’t let that be you, especially not with your family.
My next piece of advise... do your homework. If the diagnoses your loved one just received is autism, go to autismspeaks.com or to your state’s autism website (here it’s autismnj.org) and learn. If it’s a different diagnosis find a reputable website or medical journal and read up about it. The more you know the more understanding and helpful you can be. Then if they come to you for support of advice you will be much more equipped to give it. Don’t however call them up afterwards and try to give them a bunch of unsolicited advice based on what you’ve just learned.
Next, be willing to listen. Sometimes when you’re finding your way through being diagnosed or having a child that was just diagnosed what you really need is someone that cares about you, who is not your spouse that is going through it with you, to sit down and nod and be reassuring while you word vomit for a while. It’s actually quite therapeutic for some people. So make time make them feel heard and then keep it to yourself. It’s not your information to share, so don’t turn it into gossip or bring it up at the dinner table at Thanksgiving.
Lastly and probably the best thing you can do is just to love them! With your words, but more importantly your actions. Continue to invite them to everything you normally would, but be understanding if they have to decline, be late or leave early.
Just be the warm, comforting environment that family is supposed to be.
Megan is a stay at home mom of two au-some kids & the vice president of the Hoboken Special Needs Parents Group. Her children both attend Wallace Elementary, here in Hoboken. Both children are extremely active and always keep Megan on her toes! She and her husband Matt moved to Hoboken in 2014 and they hope to make it their forever home. You can also find Megan in her role as the children’s ministry leader at Hoboken Grace Church.