Parenting - Part 9

Looking Back: What I’ve Learned Along the Way

October 10, 2016/by Angela Conrad

As I think back to the beginning of our life with autism, all I can say is that it has been one rollercoaster ride after another. I have fallen and gotten back up, time and time again. I’ve learned more than I ever thought would be possible from two little boys 30 years younger than me. It hasn’t been easy, but through strength and courage we continue to move on, each and every day. It’s really been what we have learned along the way that has gotten us to where we are today.

Hope is such a simple word, yet a huge part of our life. I’ve learned the real meaning of hope and how to cling to it every day.

I first realized that I had no other option than to turn to hope for a better tomorrow shortly after Andrew’s second birthday. Andrew was two and Trenton was three. I had been sleep-deprived for almost three years by then, and the life I knew before autism was no longer in the rearview mirror. It was gone forever. I knew in my heart on that particular day that Andrew had autism. My mom had sent me a picture of Andrew’s very long line of random items while she was watching him. He didn’t want to do anything else that day except line items up. In that particular moment, I stopped what I was doing and mourned for Andrew. Then, a few minutes later, I turned to hope.

I never know what each day will bring or what challenges we will face that day. Some days are harder than others and some challenges are way more exhausting than others. However, we continue to hope for the best. This was very hard to do after Trenton’s diagnosis, when I was trying to adjust to both the new diagnosis and our new life. But I learned that, if you can get past that point in your life and focus on hope, you will have a much brighter outlook on your new life despite the challenges.

While clinging to hope, I’ve learned that life is really all about the small things. They bring the biggest and brightest smile to not only my face, but to my sons’ faces as well. The first time I truly realized how amazing the small things were was the day Trenton wanted a pancake. He was three years old and I was trying hard to get him to use a picture exchange system. He was upset and I couldn’t figure out what he wanted. Then, he suddenly showed me the picture of a pancake. As you can guess, those pancakes were made immediately! He ate one and we all cheered! He had communicated what he wanted to eat to me for the first time.

That was the day that I realized my life would truly be all about the small things from then on. At one time in my life, I would have taken that for granted. But now, I don’t take anything for granted, not even the small things.

As our journey goes on, I keep learning. I’ve learned so much along the way. I look forward to each and every thing that the boys teach me. Even though we have tiresome challenges daily, every single moment is truly amazing and beautiful with them. Our hope for a brighter tomorrow is one of the keys to helping us see just how beautiful we can make our own unique and challenging life better.

When Your Special Needs Child Has a High Pain Threshold

October 10, 2016/by Laura Rutherford

A high pain threshold can be common when your child has autism or, in fact, any special need. And it can be both a blessing and a curse.

Recently, when my son Brody had an accident at home, his high pain threshold was a real blessing. He was perched on the corner of our sofa (typically, one of his favourite places to sit when I’m not looking) and fell backwards, hitting his head on the corner of our solid oak table.

While we used to have those soft corner fittings for the table that you can buy to soften the blow from such incidents, we admittedly didn’t have them on the table because Broday just continually pulls them off (and chews on them). The mummy guilt from this was an added bonus to the whole episode.

We saw it happen in slow motion, like you always do with accidents. He lay there, wedged between the sofa and the wall. He raised his hand and held his head, but there were no tears. In fact, there was no big reaction at all. His Daddy scooped him up to assess the damage and then my heart crept into my mouth when I saw his head bleeding.

Enter panic and adrenaline. We rushed to the hospital and four impatient hours later—filled by crisps, biscuits and a temporary loss of sanity—we were home with a glued and bandaged-up head.

During the entire episode, Brody didn’t cry once. And it was a cut that would make your stomach churn. It was traumatic for us, but it was just inconvenient for him. His biggest frustrations were his dad holding a towel to his head until the First Response car arrived, and the boredom of waiting…waiting…waiting at A&E. In times like this, I am massively grateful that he has such a high pain threshold. Because to feel the pain from that cut would have been awful.

It also comes in handy because Brody has low muscle tone (hypotonia) and hypermobility. These two conditions, combined with a lack of spatial awareness, means he falls or bangs into things a lot. He is always covered in bruises, but he rarely complains when he falls. A lot of the time if he hurts himself when we’re not looking, we don’t even know about it until we see a mark appear or a bruise. I swear my child can injure himself in the blink of an eye. Sadly, he has no danger awareness whatsoever and because of that, I am your classic helicopter parent. Yet I still miss a lot, or don’t react quickly enough (there’s that mummy guilt again!).

While there are advantages to a high pain threshold, there are, of course, some downfalls.

A big worry for us is that our beautiful boy might really hurt himself and we would know nothing about it—especially as he is non-verbal and wouldn’t be able to tell us. I worry about how he might suffer in silence and it makes me feel awful, not to mention how bad it makes us look as parents. After all, who doesn’t know when their child is hurt?

Brody’s high pain threshold makes us panic if he ever cries. Because he rarely does, we figure if he’s upset he must have really hurt himself or be unwell. Of course, this isn’t always the case, but it’s a real worry for us.

A current problem is Brody has started stimming by crawling across the carpet with his forehead against it. He has “carpet burned” his head on numerous occasions and has remained completely unaware that he’s done so. The same goes for head banging, which he doesn’t do so much anymore, thankfully. He just doesn’t appear to feel it.

So, I have mixed feelings about that high pain threshold. It can scare the life out of me but, admittedly, it can really come in handy sometimes, too.

What Autism Has Taught Me About Friendship

October 10, 2016/by Jodie Eaton

I think I speak for most parents of autistic children or children with autism when I say the biggest lesson I have learned is one involving friendship. (I’m never really sure how to word because both ways can, and have, upset parents in the Autism/Autistic Community. So I will use both.)

And with that I mean that we don’t have, or can’t sustain, many! It isn’t because we don’t want them, or can’t make them, or aren’t friendly. It’s not because we aren’t likable, I hope. For me, in my situation, my circle of friends rapidly deteriorated after my children were diagnosed. People drifted away and stopped talking to us.

I have absolutely no idea why. I guess it could have been a number of things, really. To be honest, I don’t dwell on it because, after the people who weren’t really my friends in the first place stopped talking to me, it highlighted who my TRUE friends were. There may only be three, but they are so close that they are like my sisters. One of them actually is my sister.

Autism has taught me that only the strong and selfless people will stick around to support you.

When my husband, Kenny, and I started our family, lots of friends in our circle of people also were starting a family, and so naturally you lose some and gain more. It’s just the way the world turns—life goes on and friends rotate.

While other friends’ lives settled into routines, and their children hit expected milestones, my life was chaos. It was unstructured and messy. I was irritable and stuck in a life that I hadn’t ordered, with very few friends or people I could trust and talk to, or who understood my children and their quirky ways.

At that point in my life, I learned that autism doesn’t really let you have many friends. People didn’t understand my worries or fears for my child, or my ramblings and rants about people or services that had done us wrong.

Autism was lonely.

My circle of friends diminished into what can only be described as literally the best friends I could have ever asked for. I had never experienced such unconditional love from people that weren’t related by blood. It was overwhelming.

One of these friends is my sister, and the other two are my sister’s best friend Louise, who we “shared,” and her sister-in-law, Natalie. We formed a bond that was so strong not even our partners get a look in. Besides the usual conversations and friendship, we support each other and are always there for each other, in a flash if necessary. We have the best support network that I could ever ask for. It may just be mainly emotional support, but to me it’s the most important kind. My friends are selfless, kind, supportive, funny and accommodating.

Having a child with autism—or two, in my case—limits my social interaction to such an extent that I run the risk of neglecting my friendships and other aspects of my life. Similarly, having a child with autism has the ability to create friendship bonds so strong, you know you’ll never worry about having friends again. Because these friends are for life and, whether they like it or not, they are not going anywhere.

Autism has taught me that only the strong and selfless people will stick around to support you. When you find friends like these, you hold onto them for dear life, because they are so precious that they become an instant part of your family. Above all else, autism has taught me that not everyone wants to stick around for the ride, and that’s fine because after all of the energy has been sucked out of me, the last thing I want to do is fight for friendship!

All I want to do is open Messenger and find out what Beck has cooked for dinner that day, how Louise has styled her hair this week, and how many dresses Nat has bought this time. I want easy, comfortable friendships, and these girls are the most uncomplicated and supportive friends I’ve ever been privileged to know.

Thanks girls!

Food and Autism: My Child’s Three Favorite Foods

October 4, 2016/by Angela Conrad

Food can be a very challenging part of your child’s ASD diagnosis. It is for one of my sons. He has a very limited menu and it continues to stay that way.

He will often eat the same thing for three to four months and then move on to another item. Then he will eat that one over and over for the next three to four months, and so forth. A few items stick around all the time and he will eat them continuously. These items become his snacks.

His snack foods often switch from chips to fruit roll-ups to fruit snacks. I have to be stocked up on these items at all times. I buy huge quantities of them weekly at the grocery store. I will never forget the day a young high school boy was checking me out and, after he scanned the 10th box of fruit roll-ups, he stopped and looked at me and said, “Is there a good deal on those or something?” It was hard not to laugh. I am sure that young high school boy could not even fathom if I tried to explain it all to him. I just simply smiled and said truthfully, “Oh my son just loves them.”

Besides snacks, there are three main food items that my son will eat for breakfast, lunch and dinner. I wouldn’t be surprised if it was the same three foods in your house.

McDonald’s Chicken McNuggets

One food item that he is stuck on and won’t give up is McDonald’s chicken nuggets and they have to be fresh. I can always be found at the McDonald’s drive-thru at least twice a day, seven days a week. I have come to know each and every worker there. I’m not going to lie — in the beginning it was embarrassing. I’m sure they thought, “Wow. This woman loves her chicken nuggets.” I often wondered if they thought I was just lazy and never wanted to cook. Whatever they think, I will never know, and honestly, I don’t care. I am so tired and exhausted on most day that I just want the 10-piece chicken nuggets before the meltdown starts.

Pizza

Another phase he goes through is pizza. His loves his pizza and he will generally eat pizza from almost any restaurant. However, do not give him a frozen pizza, as he will often turn his nose up at that. I can often be found walking into Papa John’s for a large cheese pizza. Once again, I am on great terms with the staff. One day, the manager said, “Boy, you are my biggest customer.” I tried to explain to him that it was the only thing my child with autism would eat. I could tell he had no understanding of why I had to buy pizza every two days, but in the end, I didn’t care. I just needed a pizza for my son.

Spaghetti

The other big food item of choice is spaghetti. Thank goodness, I can make this for him! During these times, I think I keep the grocery store in business because I buy noodles and sauce in large quantities, weekly.

A lot of his rigid food habits are part of his autism struggles. All in all, his favorite foods are McDonald’s chicken nuggets, pizza, spaghetti, chips, fruit roll-ups, and fruit snacks. I have to be one prepared mother every single day to make sure I have all of these items on hand at all times. I have learned the hard way what happens if I don’t have his favorite item of food for the day — I would prefer to never find out again.

My Three Hopes for My Child

October 4, 2016/by Jodie Eaton

I guess you could say I have few expectations for the hopes of my child. They’re not going to be the same, day to day or week to week, let alone year to year or decade to decade. Right now, at this very moment in time, the only hope that I have is that she can learn to understand and control her emotions.

You see, it’s a Saturday at lunchtime, and we already feel like we’ve been dragged 20 miles through the hot desert with no shoes, water or sun cream. We are exhausted to the point that I just said I wanted to go to sleep so I wouldn’t hear anyone anymore. We’ve had multiple violent outbursts and meltdowns and we need a break, even though we only just paid for a few hours respite last night.

I guess I would categorize my hopes for my child into short- and long-term hopes, just like the way you would fill out and set targets for an IEP, SAP or EHCP. Breaking down the long-term hopes into smaller parts makes the hopes reachable. Additionally, you won’t be disappointed in the long run if those hopes aren’t achieved.

When you parent a child with autism, your hopes are somewhat different than parents of children with no additional needs and disabilities. Your hopes aren’t the sort that define your future, or even the usual hopes of having a well-paying job, a nice house, the perfect illusion of 2-4 children. Instead, they’re things like: “I hope my child has friends, and can socialize appropriately.”

I am going to list three long-term hopes for my child, along with shorter-term hopes. You’ll see how, in time, these hopes will become the future. My long-term hopes will look like those of a “normal” family’s hopes and dreams for the children they are bringing up. However, when you check out my shorter-term hopes, they will help you understand that it’s going to be a long slog helping my children to reach the hopes that come so naturally to any typical family.

Long-Term Hope: Independence.

Shorter-Term Hope: For Lola to be able to recognize and regulate her own senses.

To access things like parties, cinema, ice skating, and socializing with friends, Lola needs to be able to recognize when she is becoming overwhelmed with the world around her. She then needs to be able to self-regulate these emotions and senses so that she doesn’t bubble over and become a danger to herself and those around her.

Long-Term Hope: Friendship.

Shorter-Term Hope: To be able to understand other people’s thoughts and feelings, and interpret them into clear social rules. Lola cannot sustain friendships in the way that normal children can. She doesn’t understand the unwritten rules of social communication and gets confused easily, thus making it difficult for her to be able to play appropriately and enjoy games and other children’s company.

Long-Term Hope: Communication (because communication is the key to Hope Nos. 1 and 2!).

Shorter-Term Hope: Communication is a tricky one: It ranges from understanding emotions and how you feel, to being taught how to express those emotions properly, and thus being able to communicate emotions. It also interlinks with my hope for friendship, being able to have reciprocal conversations and understanding when it’s appropriate to talk, how to express your language and how to interpret others’ thoughts, feelings, tones and facial expressions.

Making sense of the world around you is very important for communication. The world is a very confusing place for people with autism, and having too much information to process can be very overstimulating, which may lead to a breakdown in the regulation of senses. Lola will need to be taught all of these things, little by little and step by step. She will need repetitive teaching and over-learning in order to gain these skills that come naturally to you and me.

These three things are my main hopes for Lola at the moment.

I’m not hoping for a well-paid job, finding love, having children and getting married. Right now I don’t care about her travelling the world and seeing new and exciting things, or for Lola to be successful in a career or sail through school with straight As.

Of course, I would love for Lola to achieve these things. I would love for Lola to one day be able to settle down and have a family of her own and a good career, but those things aren’t important to me at the moment. Right now, what is important to me—and above anything else in the world—is that I hope Lola is happy.

Things I Learned the Hard Way About My Daughter’s Autism

September 28, 2016/by Reneé Davis

It’s been just over a year since my 7-year-old daughter’s high-functioning autism diagnosis, but the writing was on the wall long before it was official. Between autism and having three kids in four years, it feels like I’m a completely different person than the one who embarked on motherhood in 2009. I’m still very much a novice training on the job, and when it comes to autism I’ve had to learn plenty of lessons the hard way. Here are a few of them.

Most meltdowns and episodes of ‘bad behaviour’ stem from anxiety.

It took me a while to figure out that, every single time Polly acts up, there is a deeper reason. As all autism mamas and papas know, meltdowns are not the same as temper tantrums—they come from a feeling of being overwhelmed by life. The best way to stop meltdowns is to get really good at identifying your child’s triggers.

When Polly feels upset or anxious about something, she will often start lashing out at her younger brother and sister. If my husband or I manage to step in early enough, we can nip it in the bud before it escalates. That way we have the best chance of calming our girl down before she’s too angry, and figuring out what’s really bugging her.

Letting the little things go will help create harmony for the bigger picture.

I often joke about how much my standards have dropped in the last few years. I was full of ideas about how things would be when I had a family BEFORE I had children. With each new addition, my ideals have loosened up. I don’t plan too far in advance these days, and I’m a whole lot more flexible than I used to be.

I never hesitate to cancel plans, or change things at the last minute, if I know the original plans are going to cause us problems. I’m also OK with preparing three or four different versions of dinner, because I would rather my kids eat than bash my head against the wall while they refuse to have the sauce on a casserole, or the extra veggies I’d ideally like them to have on the side.

Always trust my instincts.

I’ve always been a huge believer in trusting my gut, and when I do, it doesn’t let me down. On the odd occasion that I have gone against my instincts, it has been an absolute disaster.

It makes me sad to think that we sent Polly back to school after summer last year, when I knew in my heart of hearts that she’d be better off at home. She only went back for seven weeks of the new school year before we decided that home education was the right path for us, but it was seven weeks too many. It’s taken us a long time to undo the damage those extra weeks caused.

Don’t be afraid to adapt and change, as often as circumstances dictate.

If you’d have told me a few years ago that I’d end up home-educating Polly, but sending Clara to school, I would have laughed. But that’s exactly how things have panned out. The simple fact is that Polly is the one in our family with additional needs and, as with all three of our kids, we have to constantly ensure that those needs are being met. Having both girls at home just wasn’t working, and as Clara is the type of child who will more than likely thrive at school, that’s what we’ve done. I say more than likely because it’s not even been a month yet, and the jury is still well and truly out.

There’s a brilliant Grace Hopper quote that I adore: “The most dangerous phrase is: This is the way we’ve always done it.” My husband and I are always on the lookout for ways to improve family life. It often requires digging deep, and assessing ourselves as much as the kids, and that can be a bitter pill to swallow. However, the power of positive change cannot be underestimated.

Be sure to give them a loving push.

I stand firmly behind what Temple Grandin has said about lovingly pushing autistic kids out of their comfort zone. A couple of years ago, Polly was tripping over her own feet as she walked, and could barely cross her legs. So we enrolled her in a weekly gymnastics class, and started encouraging lots of OT activities at home (including setting up a mini trampoline in our living room). Now she can confidently run and skip alongside her friends. She was scared of the idea of taking the stabilisers off her bike, but after a full day in the park dedicated to her learning to ride on two wheels, she got the hang of it. Polly was terrified of the mere idea of swimming without armbands, but after lots of practice, she is becoming a very proficient swimmer.

While Polly often feels fear a hundred times more than her sister, or other kids her age, she does something anyway, and her hard work eventually pays off. I couldn’t be prouder of her.

The Three Friends That Every Parent of a Child With Special Needs Requires

September 27, 2016/by K.M. Hodge

I am a lot of things: daughter, sister, wife, social worker, author, and mother to two boys. Becoming a mother to a child with autism changed me in a million different ways, mostly for the better. For almost a decade, I have struggled to be the best parent I can for my son and to help support him in being successful, as well as be there for my other son. I don’t always balance it well, but I always try.

As parents and caregivers to children with special needs, we are all experiencing this journey in a different way. What works for my family might not work for yours. While our experiences may be different, we all have one thing in common: We all need a strong support system. When I first became a parent to a special needs child, I thought back to the training as a social work student that I got in college. I learned how to help clients measure if they were plugged into their environment (i.e., belong to groups, clubs, church, etc.) and if they felt supported. It’s a really important exercise because there is a strong correlation between a strong support system and a happy/contented individual.

Our experiences may be different, but we all need a strong support system.

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Take a moment to ask yourself these questions:

Do you get as much as you give out to the world around you?

Do you feel supported or pulled in several different directions?

Whether your child has autism, ADD, ADHD, or any other special needs diagnosis, you need support. You need help. Have you ever seen the movie, “28 days,” with Sandra Bullock? She is in rehab for drug and alcohol abuse and, as part of her treatment, she is forced to wear a sign around her neck that says, “Confront me if I don’t ask for help.” Consider this my reminder to you to ask for help, plug into the world around you, and make lasting connections with people who support you.

I could write a book about all the ways to do this but, for today, I just want to tell you about three types of friends. These are the ones who can help support you during these challenging times spent raising special needs kids, and having them saved my sanity.

The ‘Been There, Done That’ Friend

This is the friend who has a child or multiple children with special needs who are older than your child. This is the friend who knows the ropes for getting services from your state or the school system, the best therapy places, and the tips and tricks to get your insurance to pay for stuff. This friend will help you learn the language that will make you an effective advocate for your child. They are also the one that gives you hope that things might get better. Hope is important.

My best friend has been instrumental in helping me learn about all the services that are out there. She validates my experience, offers a shoulder for me to cry on, and normalizes the feelings and emotions that come up. This is a vital friend to have!

The ‘Same Stage’ Friend

This friend has a special needs kid who is the same age and/or gender as your own. This is the friend who is struggling with the same or similar struggles that you are, and they aren’t going to judge you or your kid when they do something that is considered socially unexcitable. This may be a mom, dad, or grandma that you met at a meeting, in a therapy waiting room, or in an online group. I have a few friends that fit this mold. We discuss things like problems with teachers, school districts, and insurance. You may not cry on their shoulders, but they wouldn’t bat an eye if you did. They get it! No judgement; just support.

These are the best kinds of friends to ask for ideas to problem-solve the newest challenge you and your child might be going through. They let you know about the free baseball games for children with autism or the autism-friendly restaurants or businesses. They know that doing simple things like getting a haircut or going to the dentist can be a scary prospect, and that having a plan with a good place to go ahead of time makes a world of difference.

The Ally

This is the friend who loves you and your kid as is, even though they don’t have a child with special needs. This is the best friend of all of them to have, because their kids are often understanding and cool to your kid, too. This is the family that shows up to your kid’s birthday party when all of the classmates that were invited didn’t come. This friend does playdates on a regular basis.

I am very blessed to have a few friends who fit this bill. They are my coffee buddies and my weekly playdate: my make-me-laugh friends. Their same-age, neurotypical child also helps me to see what behaviors and issues are just “normal” age-related things, and not anything associated with my son’s diagnosis. The “ally” is the friend who kidnaps me and takes me out for a drink or a cup of coffee. I love this friend.

Easier Said Than Done

It is very hard to build up a support system. It takes time and, yes, energy to cultivate these relationships. It hasn’t been easy for me, but it has been so rewarding and worth it in the end. The important thing to remember is to step outside of your world and talk to other people as much as you can, even if it is just over the Internet. Though do try and get out of the house as often as you can, too!

Remember that you are important and need to be cared for. Don’t give up trying to find ways to care for yourself, as well as your child.

Fighting the Good Fight

September 27, 2016/by Kathleen Tarzwell

“I will never give up.”

The phrase in itself is a huge commitment, compacted in a small sentence. It’s something I vowed early as a parent, and the meaning evolves daily with infinite responsibility. I don’t allow words such as “special” or “single” to define the parent that I am. I strive to be the parent defined by the happiness of my son’s smile and the quality of the life that he leads.

“I will never give up” is at the heart of every advocate, fighting for the world to see behind the barriers that have been built. Often, a child is hidden behind or buried beneath it all—a child who needs your help. My child.

Daily, my son faces new and recurring challenges that I help him overcome. We replace each roadblock we meet with a detour all our own. Not every day provides a solution. Sometimes the challenge is one that turns into a battle, a fight, an all-out war.

IEP Meeting. (Pause, inhale, exhale)

Yes, it deserves its very own sentence, and a pause for every parent to use a few choice words describing how those three small letters really make you feel. I’ve never attended an IEP meeting that did not age me at least seven or more years each time.

The most important advice I can give to a parent attending an IEP meeting is to think like an educator, but act like a parent. What this means is remember the school district is there for the budget, remember to take as much emotional thought out of the equation as possible, but remember lastly to never, ever, ever back down.

Stand your ground as much as possible, because you’re fighting for what’s right for your child. They’re fighting for what’s right for their balance sheet. It’s harder to say than to actually do, but focus on what you can change and don’t waste time on the rest.

There will always be another round, a rematch, the IEP meeting you’ve dreaded; it never ends. When you feel like throwing in the towel, get off the ropes and remember how far you’ve come. Never give up. Keep fighting the good fight.

The Day My Daughter Surprised Us All

September 25, 2016/by Miriam Gwynne

My daughter had been in school for almost two years, but her anxiety was still as high as it was on Day One. I had chosen to defer her starting school so, although she was one of the smallest in her class, she was actually one of the oldest. The staff described her as a very able child, yet having great difficulty communicating—especially verbally. She was overly shy, selectively mute, and very anxious but kind, conscientious, and a great listener.

I loved her teacher that year. She was one of those amazing people who somehow managed to get the best out of all the unique children within her class. For the full academic year, she has pushed my daughter slowly out of her comfort zone and, on a very odd occasion, even managed to hear a little whisper from her when reading or answering a question.

But despite this progress, we were both well aware that the forthcoming class assembly would be very difficult for my autistic daughter.

The year before, it had taken months to prepare her, and it was decided that if she was able to take part at all that year it would be a massive achievement. She was given the only non-speaking part. We bought her costume weeks before, so she could get used to the feel, the material, and the idea of having a hat on her head. She was to be the explorer going on a bear hunt and ended up with the starring role. She walked when she was supposed to and stood still on cue. She looked incredibly cute, too!

Fast-forward to a year later and a whole new assembly, this time French-based. The entire class had a part to play, and it was initially agreed that my daughter would simply hold up a card on cue during the “months of the year” song. I was delighted when she wanted to practice at home and we found the song on YouTube and practiced holding that card up for the world to see. To me, she was going to be the best October any child could ever be! I knew I would not hear her voice on the day, but we practiced every song like our lives depended on it.

Then one day she came home even more anxious than normal. “Mum, my best friend has some lines to say and she is really struggling. I want to help her but I can’t.” We talked about how to help her friend by encouraging her, practicing with her when they were together, and telling her friend that she believed in her.

The next day, her teacher suggested something that seemed totally crazy. She asked my daughter if she would like to help her friend by saying some of her lines for her.

A teacher chose a child with severe anxiety and selective mutism to help another child with a speaking part for the school assembly!

My little six-year-old daughter had not raised her voice once the entire year. She had whispered a few words and that was all. When I heard the teacher’s suggestion, I was wondering if she had any idea what she was suggesting.

She believed in my child.

The day of the assembly arrived. My daughter held up that October card as proud as can be. The songs were lovely and the speaking parts so clear and well-rehearsed. The assembly was almost over when my daughter’s best friend came to the front to say, “Thank you for coming to our French assembly today…”

I watched as my daughter walked slowly to the front.

The room fell silent.

With a voice as beautiful and tender as an angel’s, she spoke clearly and as loud as all the others…

“We hope you enjoyed our songs and actions. From Primary 3, merci et au revoir.”

There was hardly a dry eye in the room the day my daughter surprised us all.

What to Do When a Friend’s Child Is Diagnosed With Autism

September 13, 2016/by Katie Read

When a friend or relative’s child is diagnosed with autism, it can be awkward and uncomfortable. Many people just don’t know how to respond.

I get it—I really do. But it’s best to do something. Here are some basic do’s and don’t’s that I recommend, both from my own experience and the experiences of other autism families.

Do:

Call your friend. Texting doesn’t count! (Younger parents—I know you disagree on this. Take it from a 40 year-old. A real live phone call goes a long way!) Ask her how she’s feeling. Let her know that she can vent or cry to you. We are all afraid of being downers to other people. Knowing someone can handle the hard stuff means everything.
Bring over a cup of coffee. Or a casserole. Or a bottle of wine. Or 14 Cadbury bars. I’ll always remember the friend who came by with Starbucks when she heard. The little things really do count the most at these hard times.
Keep inviting your friend to all things you would normally do together. Storytime on Tuesdays? Invite her. Playdate after school? Invite her. Your friend will decide if an outing is too much—but the worst thing is for her to feel isolated or rejected by the lack of invitation.
Treat her child the same way you always have. If this is your nephew and you have always had free reign to correct his behavior, keep it up! We want our kids to have as typical a life experience as possible, which means typical experiences with every day people. Unless or until your friend asks you to treat their child differently, just keep up business as usual.
If you can offer to babysit, do it. You cannot imagine the to-do list that was just dumped on your friend’s lap. Diagnosis means endless phone calls to insurance companies, state services, school districts, early intervention, speech, PT, OT, endless coordination of appointments, reams and reams of paperwork, and a whole reorganization of life as she knows it. And all of this has to be done while she is feeling grief, fear, and confusion—and still parenting and working and cooking and cleaning and all the daily stuff of life. Even if you can supervise the kiddos downstairs while your friend starts her list of phone calls upstairs, it will help. A lot.
Do know that your friend is genuinely mourning a loss. I know it’s taboo to say that early diagnosis is a time of mourning, but honestly, it is. Imagine going from typical parent dreams—that our kids will be athletes, valedictorians, successful spouses and parents—to simply wondering if they will ever live on their own, hold down a job, or even speak. There is grief there. Treat your friend as you would any person going through a tough time.

Don’t:

Don’t use a bunch of platitudes to try to make the person feel better. “It’ll be all right,” “it’s all good,” “everything happens for a reason,” “you’re the best person to handle all of this.” These things don’t make us feel better. They might make you feel better, but they make us shut down the actual expression of our feelings, our fears, and our intense new stress.
Don’t say, “I’m sorry.” Honestly, this doesn’t bother me personally. When people say, “I’m sorry,” I assume that they mean they are sorry because it must be stressful and scary and hard—which it is. However, I know that many, many autism parents hear this differently and find it very offensive. Don’t risk it.
Don’t avoid your friend, assuming they want space. If you give someone space without first asking if they want space, they basically feel rejected and isolated. Everyone wants the choice of space. No one wants space forced upon them. Invite your friend out as you normally would, and do not take it personally if she can’t participate for a while.
Don’t stop bringing your child around the child with autism. I had regular weekly playdates with two friends and their kids for the two years prior to diagnosis—and literally never saw them again afterwards. Both sent texts: so sorry, hang in there, and then had excuses every single time I texted for our typical playdates. I got the message pretty quickly—but it was still shocking, and still stung like crazy. Your child will not be stunted by hanging out with an autistic child. In fact, your child will definitely have autistic peers in school, so might as well start their education (and your own practice of inclusion) now.
Don’t humble-brag/compare/complain about your neurotypical kids. “I’m sure he’ll start talking. It’s just like how we never thought Billy would win gold at State, but then he did!” No. It’s not.
Don’t assume there is some huge, glowing autism community that has scooped up your friend and given her a fabulous social life. There isn’t. This disorder is wildly isolating for families. Plus, even when we meet other autism parents, the spectrum is so huge and our experiences so different that it’s still often hard to connect. The lucky ones will find a few great people along this road, but in the early days, we really need our long-time buddies.

Now call your friend and get to Starbucks and put on your listening ears. She will remember it forever. I promise.

A version of this was originally posted here.