Do you feel tongue tied when you meet parents with special needs kids? Are you worried that you might say or do the “wrong” things?
As the mother of a child with autism, I’ve seen a lot of people in your situation. And even though most mean well, sometimes friends and family do end up with their foot in their mouth.
My son Addy was diagnosed with an autism spectrum disorder about one year ago. I remember sitting in that doctor’s office, twisting a Kleenex in my hands to calm my nerves, feeling terrified to hear her say the words I knew were coming.
That day feels like a lifetime ago. The process of getting a diagnosis and taking the next steps was at times overwhelming, and it was an adjustment that took time not only for me, but for those closest to me as well.
Through mostly a process of trial and error, my friends, close family, and extended loved ones no longer worry so much about what to say or do when it comes to Addy. His autism is merely another part of what makes him who he is, much like his love of Thomas the Tank Engine and grilled cheese sandwiches.
According to CDC, 1 in 68 children is identified with Autism Spectrum Disorder. Today, I’d like to share with you, the best I can, what it is like to be the parent of a special needs child, and what you can do to support that parent in your life with a child like mine.
#1 Don’t ignore their concerns in the beginning
Addy was my first child. Born in the summer between what was to be my final two semesters of college, he was at once everything I feared and everything I dreamt of one day having.
As the story usually goes, life had its fair share of surprises in store for me, the first of which presented itself not long after I’d begun to feel comfortable, if not confident, in my ability to thrive as a single parent.
Addy was particularly quiet as a baby, opting to communicate with his body rather than with sounds – when he chose to communicate at all. By the time he was nearly 18 months old, he was still largely non-verbal, and getting even the shortest bit of eye contact from him felt like a losing battle every time.
Whenever I tried to bring up my concerns with those closest to me – and more experienced – I was always met with the same reaction: he’ll talk when he’s ready. I’m sure everything’s fine.
Even though I knew that they were trying to help, I wanted to shake them. I wanted to scream.
No, everything isn’t fine!
When interacting with parents who may suspect that their child has special needs, it may feel natural to assure them that everything is okay. It may feel like you’re helping them, offering comfort by denying the mere possibility, and while it’s true that some may be looking for someone to assuage their fears, some of us just want what we see with our own eyes validated.
If you’re sensing that they want someone to acknowledge their concerns, here’s what you can do: use that opportunity to change the tone of the conversation. Finding out that your child has special needs does not need to be approached as if it’s the end of the world. Assure them that, even if that is the case, everything will still be ok.
Help them find ways to be proactive with their concerns, rather than just trying to hand-wave them away. It takes courage to get to that point, and that courage should be commended.
#2 Maintain a positive attitude
That day in the doctor’s office, I thought that hearing her say the actual words (“Yes, Addy does have an autism spectrum disorder”) would destroy me. But, after all was said and done, I felt an immense rush of relief.
Of course, once I got back home and everything really sunk in, it wasn’t long before I got to worrying again. But, in that moment, I felt as if I could finally stop wondering about the ‘what if’ and instead we could move forward.
I gave myself that time to cry and to feel fully whatever came, and it’s ok if you need to do the same, even if it isn’t your child. Maybe it’s your grandchild, or nephew. ‘Working through it’ for yourself in this way puts less pressure on the parent you’re trying to support. I couldn’t walk each and every person close to me through the process of acceptance I went through; I didn’t have the emotional energy left over.
A diagnosis isn’t a death sentence. I view it as the gate through which parents of special needs children can walk through in order to start moving toward a better life for their child, one in which they’re equipped with the tools needed to help them fulfill their potential.
But after all this time, I still forget that. Sometimes it does feel like a death sentence, like I have to say goodbye to everything I wanted for my child. There are times when I still get lost in the guilt and the hopelessness, wondering time and time again if it was something that I did (even though I know that it doesn’t work like that), feeling anxious about what the future will be like for my son (no one knows, just like with any child).
At times like those, I needed the people around me to help lift me back up again. My sister was that person for me, always there to remind me of all the good things to look forward to, of all the progress we’d already made.
If you’re close to a parent who has a child with special needs, be that person in their life who seems to keep a tally of every single thing they have to be happy and optimistic about, and can recite it back on command.
Having people there to share in my optimism when it came to our next steps (like therapy and early intervention programs), to celebrate our good days and soothe us on the bad days, has made all the difference in my life.
#3 Do your research
Before Addy, autism was a hazy, unfamiliar concept to my family, just a word associated with charity walks. It was distant, something that didn’t really exist in our world. I’m not proud to admit that, but it’s the truth.
I like to think that I’ve come a long way. I know now that autism isn’t just a quiet kid in a movie who’s really into trains. I’ve come across a lot of definitions, but the one I usually parrot comes from the National Institute of Neurological Disorders and Stroke:
Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.
I feel like I could recite that in my sleep.
But here’s the thing: I’m not always in the mood to educate, especially if we’re having one of our more challenging days. Sometimes I feel like a broken record, wishing I could just hand out a brochure to all the aunts and uncles and distant cousins who have questions over holiday dinners.
Sometimes I’m happy to talk at about it – I’ve gotten to that place, but maybe other parents haven’t. There’s a chance that everything is still very new and intimidating for them, and they’re struggling with it. Read their body language and tone, and you’ll probably be able to tell which stage they’re in.
The first few weeks following an autism diagnosis can come with a renewed sense of hope, now that you have a name for something that felt so present in your life but which you were unable to articulate. At the same time, it can be nothing short of terrifying to feel as if you’re entering completely foreign territory with the future of the person most important to you at stake.
Look at it this way: if your niece has just been diagnosed with autism, bombarding her mother with questions like ‘So what is life going to be like for her now? Can she go to ‘regular’ school? Will she ever learn to talk?’ may just send her into the tailspin she’s been trying to avoid.
Doing your own research doesn’t mean you can’t ask questions. It just means you care enough about both the parent and child in your life to do some of the work yourself. Chances are, you may learn something they haven’t yet, or bring a fresh perspective to later conversations.
If your child is friends with a child who has special needs, doing your research can be as simple as a Google search to make sure you know the basics, and talking with the child’s parents so that you’re aware of any sensitivities you need to be aware of.
For example, some individuals with autism are extra sensitive to light and sound, and events that have too much of either may overwhelm them. You’d want to be aware of any allergies before planning a dinner party, wouldn’t you? It’s pretty much like that.
When Addy was first diagnosed, and the relief passed, I went through a period of time where I was too anxious to do much research, feeling overwhelmed by search engine listings that included words I’d never even heard before. In those days, my older sister was an invaluable resource for me. She did research on her own time, and would causally drop encouraging tidbits of information into our conversations, and would gauge from my reaction whether I was ready to hear more.
Having it come from a loved one who was trying to help me made everything less scary for me, and helped me get over the paralyzing fear and continue moving forward, having been reminded that I didn’t have to do everything alone.
#4 Be there for them, even if you don’t yet know what to say
There’s a lot to be said just for being there, physically. My brother went with me to every appointment during the stages of getting the diagnosis. As a single parent, I told myself that I’d be able to continue handling everything on my own, but when the time came, I was thankful just to have another adult in the car with me on the way home.
You may not always have the right words, but you can try and be physically present for the support. We were all still learning about autism, but when my family saw the emotional toll it was taking on me (and the fact that I often looked close to having an emotional breakdown, if I’m being honest), they stepped in.
They offered to babysit, so that I could have time alone with my thoughts, uninterrupted by children’s show theme songs or insistent crying, or take the time to get out of the house (and out of my head). They cooked meals for me, to take some of the pressure off. They sent me encouraging text messages, just reminding me that we were all in this together.
Once I opened up and let them in, my family rallied around me; we were all brought together in support of my son. All of us are closer now than ever before, and that’s bemuse they made it clear, through their constant presence in my life, that they wanted to support us in whatever way they could.
#5 Be patient
Addy and I have embraced our new normal of almost daily therapy, of beginner sign language and sensory social routines (games that encourage social interaction), but every day comes with its own challenges and rewards, and feeling optimistic one day does not guarantee that same attitude tomorrow.
My son has not yet begun to use words, and it’s really hard for me sometimes to watch children who are younger than him be able to do things that we have to work so hard on in therapy. Of course, then I feel guilty for feeling that way – measuring him against the yardstick of other childrens’ progress- and the cycle begins.
There are days when I feel like a confident, well-adjusted parent, and then there are the days where the optimism seeps out of me like air from a punctured balloon.
The key thing to remember is that autism looks different in every individual. Some individuals with autism are nonverbal; some learn to talk just fine. Individuals with autism see the world differently than those who are not ‘on the spectrum,’ and that can manifest in skills in things like music and art.
Addy is almost three now, and doing well in therapy and the early intervention program that he’s enrolled in. Still, progress can be hard to see sometimes, and that can be discouraging. No one can really say that your child will learn how to do this or that by whatever age. All you can really do is make goals and work towards them, step by step
When you first have children, you think they have a pretty clear cut path they can follow – school, extracurricular activities, college. It feels like you have some sense of control over it, even if that control is an illusion.
Since Addy’s diagnosis, I’ve had to accept the fact that I really can’t guess what the future will look like for him. That’s hard to deal with sometimes – really hard.
Will he learn to talk? How long will it take? Will he be able to be independent as an adult?
We all have those days, whether you have a child with special needs or not – the unknown is just too much to handle. Sometimes I just need to vent, and say that I’m scared, and that I don’t like it.
The 2-Minute Action Plan for Fine Parents
If you have a close friend or a family member who is raising a child with special needs, think about how you can support them. Do you view having special needs as an awkward topic (which can, in turn, make them uncomfortable)? Are you a sympathetic ear when they need it?
The Ongoing Action Plan for Fine Parents
It’s all about being accepting of those who are different from you. Think of how you can teach your children to be empathetic to special needs kids that they meet. Set aside time to talk openly, and make a plan to learn and grow together as a family.
Use what you know to inform others and be an advocate for those with special needs. If you hear someone spreading a misconception about children with autism or any other special needs, engage them in conversation. I didn’t always know the things I know now, and you didn’t either. Maybe with enough of these conversations, parents can be more aware of the symptoms of autism and other disorders, and the process of getting help won’t be as stigmatized or as intimidating.