Living Life Lyrically

My younger daughter Zoey is not one of those 4-year-old kids that can talk your ear off or ask you a billion questions all in the span of a few seconds.

Zoey is different. 

We found out that Zoey was different when she was about 19 months old, and in the month before her second birthday we would know why. Zoey was diagnosed with severe non-verbal autism, with “no guarantee of speech.”

Severe non-verbal autism is rough. Anyone that tells you otherwise isn’t telling you the truth. A child that can’t verbally express their wants and needs is a child living in pain. As a parent of a child whose only way to communicate is to scream and thrash around because their words are trapped inside their beautiful minds, I can tell you that it is excruciatingly cruel.

The emotional and physical toll that these tiny humans and their little bodies go through because their voices can’t be heard is heartbreaking to witness day and night.

Zoey has been getting intensive early intervention services since she was 19 months old, and at 3 years old she transitioned into the public school system. She also started receiving outside ABA and in-home ABA, and we haven’t been able to work in music therapy and swimming lessons.

She is a very busy little girl. She works very hard—her schedule is busier than most adults working two full-time jobs and she’s only 4 years old.

Thankfully, I had found a way to communicate with Zoey early on, without words, and it was completely by accident.

It’s with music. I love music, and I found that she does too. I downloaded numerous songs onto an old iPhone and for two years she has been communicating with me via music and song lyrics.

Certain songs on her playlist have eased her frustration and anxieties. Other songs are used to convey a message, with some lyrics played to tell me something. She lives life lyrically. One example of what living life lyrically means…

Recently, we had a two-hour drive to our state children’s hospital. It was a two-hour appointment and then another two-hour drive home. A total of six hours with a non-verbal child. All we had was music between us. She played her songs, while I listened and tried singing along. I don’t think she liked the way I sing because she changed the song every time I sang.

On the ride home, I had to process a new diagnosis of ADHD that I’d been given for Zoey, and I had no one to talk to. I listened to the songs that Zoey played from the backseat as I drove in silence, while hiding my tears as best as I could. I was feeling so very sad for her and this sadness was visibly hurting me. It must have been obvious to Zoey as she sat there playing her music.

The next day, Zoey played the same song over and over for the 25-minute ride to ABA. It was actually just one lyric over and over, for the entire ride. I got out and I tried to hide my tears as I dropped her off. The song had been from Michael Bublé and the lyric was, “Baby you’re not lost.” Played over and over for 25 minutes. Yeah, I broke down after she was gone. How could you not? She was telling me through song that everything was gonna be OK and that she’s not lost and together we will make it through.

Something similar happened just the other morning on our drive to school. She played a song that she’s never played before and she kept rewinding the same part of the song, just as she had done that other day. I knew right away that she was trying to tell me something.

The same lyrics for a 21-minute drive to her school.

I said, “Mama hears you. I get it baby girl. I understand what you’re saying. I will listen to the words that you cannot verbally say to me and I will make it better. I will change your schedule to fit your needs.”

The song hook she played stung me like a bee. It hurt; it hurt so much.

It was Human by Christina Perri: “I’m only human…I’m only human…JUST a little human…I can take so much until I’ve had enough…because I’m only human.”

I cried the entire ride home for my child. Through the song lyrics, Zoey was trying to tell me that she’s tired and that she’s had enough. She needs a break in her schedule because she’s working hard, so hard. It’s been 2 1/2 years and she’s just a tiny little human that needs a break. And I hear her—I hear her without her having to verbalize a thing.

The original version of this blog post first appeared here.

Speaking Through Our Tears

Sometimes in life there isn’t anything that anyone can say to make things better. At times, there isn’t anything that I can say at all. During those times, the tears that roll down my face speak volumes.

Sometimes, tears are the only words that need to be spoken.

My son speaks with tears when he can’t communicate his needs. I watch the tears flow down his precious, rosy checks until they fall completely off his face. And right behind those tears are many more. The tears of anguish, frustration and sorrow flow down that face that I love so much. Within an instant, the tears start to speak from me in answer to his. My tears of empathy, love and hurt glide down my face, too.

No words need to be spoken—just tears—and that is perfectly OK. Sometimes we need a good cry. Sometimes there just aren’t the right words, in any language.

The tears are right there, speaking to me from my son’s eyes when he isn’t included by his peers. His beautiful brown eyes look up at me with the tears welling up and soon they explode out of his eyes. In those moments, he doesn’t need to speak; I know exactly what his tears are telling me. We simply hold each other, crying and expressing our feelings through our tears.

Our tears speak at other times. They are there with us during his meltdowns. They are there when anxiety takes over. The tears pour out during sensory overloads and when he can’t sleep. They are around us, speaking daily, through our struggles with autism. They have become a huge part of our life.

Of course, there are also the tears of loneliness and isolation that come with autism parenting. By all means, the tears of frustration from being judged and from the lack of understanding from others must be added to our list.

Thankfully, we do speak more than just through heartbroken tears. Our spoken words through tears can be very magical and exhilarating at times, too. I often have tears while I am admiring my boy’s small accomplishments. There is nothing better than celebrating our goals with tears of joy. I will never forget the tears the first time I heard my son say my name or the first time he peed in the potty. Some moments just leave us speechless, so the tears speak instead.

There are so many spoken words from the tears that fall in an autism household. Autism parenting, or special needs parenting for that matter, simply comes with its silent moments where tears are the only words that need to be said. There is no shame in admitting it. We all know our children with autism speak that way at times, so by all means, we are allowed to, too!

Throughout the past few years, as I have gone through the most difficult times in my life, I have cried a lot! The saying that big girls don’t cry can be thrown out the window when it comes to special needs parenting because big girls (and boys) can (and do) cry. Sometimes we simply have to relieve the pressure that our eyes feel from a stressful special needs world. Sometimes we just need to speak tears. There are those moments and days when, no matter what words we speak from our mouth, no one would understand, and those are the days that we just speak through our tears.

While you are speaking through your tears, please know that you aren’t the only one. Somewhere in this world, there is another autism parent also speaking through their tears. Somewhere there is another individual with autism speaking through their tears, too. It is a language most of us know.

Confessions of a Special Needs Parent

Parenting is hard. I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and loving.

Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world.

Scary, right?

You aren’t a doctor. Or a therapist. Or a physiologist. There is no instruction manual. It’s just you knowing in your gut that something is wrong. It feels like a roller coaster. It feels out of control. And just like parents of typical kids, you have no idea what you are doing. But yet, you are entrusted to raise this tiny VULNERABLE human.

At first, you don’t want to acknowledge it. Then, you don’t want to believe it. But once you get over that hurdle, you want to talk about it. You need knowledge. You need to vent. You need a friend. You need people to understand.

Parent Shaming

You turn to your spouse. Your family. Your friends. Whoever will listen. You need help. You need someone to hear you. But the conversation seems awkward. Strained. The friend looks at you funny. You see judgment. Doubt. They don’t relate. They don’t understand.

You try in the break room with co-workers. You try to vent during Happy Hour. But it never seems right. The looks make you feel shameful. No one gets it.

So, you stop talking. You silence yourself. You start to wonder if you are just complaining. Maybe you are just bad at the parenting thing. Maybe, just maybe, you are making some of it up in your head.

You start to doubt everything.

From that moment forward, you struggle silently. You keep your mouth shut.

When you do mention any of your struggles, you feel the need to put “but I love my child” in every sentence.

I want to tell you that this is wrong and it is an inevitable part of raising a special needs child. It happens to me frequently as a writer and a mother. So, in response, I asked special needs parents to confide in me. I asked for their secret confessions. I asked their deepest, darkest thoughts. I did this because you and I need to know that we aren’t alone. Our feelings are normal. We are human.

Humans who live in a secret world.

My Advice to You, Dear Friend

On your darkest days, I want you to read these words from your fellow parents. And you will know that you are not alone. What you feel is completely normal.

There were 225 of you who sent me confessions. These are my favorites.

“I love my daughter to the end of my entire being. I prayed so hard to become a mom and she is who I got and I love that I was blessed to have her, but sometimes, I really hate that this will be my life forever. I have people who encourage me to see the beauty in autism. But the life I live every day isn’t always beautiful.

“I’m scared I don’t love my son enough. Through the trauma of the diagnosis and the daily difficulties we face I sometimes fantasize about running away. I wish my life was different.”

“The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”

“I’m addicted to over-the-counter sleeping pills. My anxiety is so high over not sleeping that I have to take a sleeping pill just to fall asleep. And I don’t even care.”

“I haven’t told my boys (ages 6 and 4) that they have autism. I know it’s coming. I am terrified.”

I’m not planning for college. Instead I’m planning a way to pay for her care for the rest of her life.”

“I have to message this one because it is so dark to me and the thought scares me and breaks my heart simultaneously. I fear my son will require constant care for his whole life and I’m scared one day I may resent him for it.”

It’s all my fault. #AUTISM”

“I hate people who say it’s a blessing. Autism is a curse. My son is higher functioning, so was diagnosed later (his early symptoms were to subtle to get anyone to listen). No child should have to go to treatment all day instead of playing. I will never consider having another child, I love my kids, and EVERY DAY is a struggle for them, and us. Every time I call their names and get no response, I crumble inside.”

“I fake everything. I am always smiling. I am always laughing. People say I am the strongest woman they know. LIES. I am heartbroken. I love my kids. I love my husband. But I am a different person. And no one understands. I feel like a shell of the woman I used to be.”

“I was telling my best friend I don’t want to have another child because I’m scared they could have special needs or have them worse than my son (even though I want more kids more than anything!) And she said ‘but that’s just hard on you because you have to do a lot for him…would you change anything about him?’And I had to answer no I wouldn’t change him, but the truth is…I would. I would change EVERYTHING!

“Some of the sounds my son makes actually haunt me. I have to wear headphones at times.”

“I relive my pregnancies trying to figure out what I did wrong.”

“I have a ‘sad’ moment every single day about the things that my son will miss out on because of his non-verbal, severe autism. I do everything I can to help him, but it never seems like it’s enough. I allow myself one good, gut-wrenching cry a week. If I didn’t limit it, I wouldn’t be able to function. He was diagnosed 2 and a half years ago, and it hasn’t gotten easier.”

I see no future for my child and it breaks my heart daily.

“I am angry at my husband because he gets to have a job. I have a college degree too and I can’t work because no one else can take care of our son.”

I know my marriage will not survive this.”

“I give up almost every day. Actually that’s a lie I give up every day! Sometimes as soon as I wake up.”

I secretly cry every day. My husband has no idea. He thinks I’m taking a bath or doing laundry.”

“I will never have another child. I actually made my husband get a vasectomy. I could never do this again.”

I grieve over the life I should’ve had.”

“My heart breaks when I think about huge milestones that we will miss. Graduation, Prom, Senior Pictures, College, Marriage, Grandchildren. I’m never going to have any of it. I should’ve had more kids.”

I wouldn’t wish autism on my worst enemy. I cringe and get jealous and emotional when I see a ‘normal’ kid my sons age. When I see them talk or do normal three year old things that mine should but doesn’t it stabs me like a knife inside. It kills me.”

This is a glimpse into the private world of special needs parenting.

We aren’t all that different from parents of typical kids. We struggle. We laugh. We love. We survive. It isn’t always beautiful. It can often be scary. But the world should NEVER doubt the love that we have for our kids. It is fierce.

How do we advocate for something we hate so much? I hate my son’s disability, but I will travel to the end of the world to help him. I am motivated, energized, devastated and heartbroken all at the same time.

The full, original version of this post can be found here.

Questions for an Autism Mama

I thought I would do a series on answering some of the questions that people might want to ask but maybe not know how to ask an Autism parent like myself.  My responses are simply that: My responses! I don’t speak for anyone else and know firsthand that many other parents of children on the spectrum feel very differently and some think the same. Having said that, here we go.

Q. What is Autism?

A. Autism is a very complex, very personal diagnosis that affects every person differently.  There are traits that show up regularly — such as poor social interaction, lack of eye contact, delayed speech, and obsessive behaviour — but these are traits and not criteria for diagnosis. Every diagnosis is different. For instance, my daughter struggles to interact and communicate with the outside world; she lives in her own little bubble and on the whole is pretty content (until it all goes spectacularly wrong!). Other children don’t sleep, at all. Others self-harm, some appear to have nothing ‘wrong’ and only when they collapse in a public meltdown do people see what is going on inside (my son). To put it bluntly, people with autism are wired differently, not necessarily wrong. As long as you work out the ‘glitches’ you can live with it just fine.

Some use the “It’s like being a Mac in a PC world” analogy, which is good for us as I don’t understand Macs at all!

Q. What causes Autism?

A. The short answer is we don’t know. There are theories, hundreds of theories from the MMR shot to low birth weight, probably all the way down to women eating jam during pregnancy. You get the gist — most theories involve pointing fingers at parents. Like many people, I personally think that it’s genetic, as both of my children have degrees of autism and they have cousins on both sides of the family who also have it. They also have a dad with Bi-Polar Disorder, and that is connected quite closely to the spectrum.

Q. Would you want a cure?

A. This is a tough one for me. My children and their Autism are so delicately intertwined that I have no idea where one starts and the other stops. It is not like a tumour, which you can cut away and leave the original child intact (not that I’m comparing ASD to a deadly illness!). I would have no idea who they would be without their quirks, both good and bad. I think a cure sounds quite scary, in all honesty, as it kinds of hints at Hitler’s ethnic cleansing, getting rid of anyone who doesn’t conform. Autistic minds have been moving the world forward for years, creatively and technically. The world would be a worse place without them…however…people with autism have been found to die younger, due to associated health problems and, more scarily, high rates of suicide! The extreme end of autism includes co-morbid mental health diagnoses such as Bipolar, Psychosis, Eating Disorders and more. These can lead to violence towards themselves and others, and I can imagine the people struggling with all this and their parents wish for a cure every day.

It’s a tricky one, everyone is so different.

Q. Do some people use the “Autism” label to detract from bad parenting?

A. Probably, I can’t speak for anyone personally but I am sure there are people who would rather have their child diagnosed the Autism or ADHD than face up to their shortcomings as a parent.  I should probably mention that getting a diagnosis for many people seems near impossible so anyone who actually starts on this route for the wrong reasons need a ‘check up’ themselves.
On the flip-side having a special needs child’s doesn’t mean you can slip into bad parenting techniques and it doesn’t mean that they can’t be naughty. Both of mine regularly do things they know they shouldn’t but the way I deal with them differs to suit their understanding. Autism is a diagnosis not an excuse.

Q. Do Autistic people have a “special gift?”

A. Generally no; being a savant is extremely rare. Autism can often present with a variety of learning disabilities as well as communication difficulties, so asking a parent of these children, “Ooh, are they good at Maths?” may not generate a particularly positive reaction. I personally have two children: one who has severe communication difficulties and is considered at the severe end of the spectrum. She learnt to read at age two by rote and learnt her times tables the same way (clever, yes; savant …p robably not.) I also have a child at the polar opposite end of the spectrum who can talk, interact and, on the whole, doesn’t appear “typically” autistic. He is struggling with the basics of phonics (which isn’t unusual for his age, but it’s clearly not savant).

Q. Will your child grow out of it?

A. No. Hopefully my daughter will grow with it, as will I as a parent and her advocate. If your child grows out of their Autism, I would argue as to whether they had Autism to start with.

Q. Would you be offended if I asked you these questions to your face?

A. No, I’d be offended if you whispered about me and my family to other people. I’ll also be less-than-appreciative if you start telling me about Autism because your ‘sister’s husband’s ex-uncle knew someone with ASD.’ Unless you live with my children day in and day out, you know nothing about their autism.

Some of this might sound harsh or bleak, but it’s not my intention. Knowledge is power, and in order to have real Autism Acceptance we need to be able to have honest conversations. Feel free to comment with any thoughts or questions of your own.

I Hope You Can Read This Some Day

Today you turn 15!

I close my eyes and I can picture you when you were small enough to hold in my arms. Your little blonde curls, your tiny, dainty fingers, your big brown eyes. I can still hear that beautiful toddler giggle you made when you were being tickled or chased, and that “Kee! Kee!” sound you squealed when you wanted a cookie.

Here we are, all this time later. You have outpaced me in height, and in the size of your shoes and your bra.

Baby girl, I don’t know where the time has gone. This journey, our journey down Autism Lane, we’ve done it thus far by focusing on the present, not the future. Each day you wake up with a smile, I smile. Each night you sleep well, so do I. Each day we get through without a tantrum is a success. Even on the not-so-good days, we’ve still managed and overcome.

It has been a privilege and a blessing to be your mommy. You have taught me more about life than I could have ever imagined. I am such a better person than I ever knew I could be. All my best qualities, I learned from being your mama. Courage, perseverance. Innocence, optimism. Appreciation, tolerance. Confidence.

And love. I had no idea I could love someone so much. You and your brother have made my heart swell to a million times its pre-parent size. Every time I think I couldn’t possibly love you two more, I do.

The way you look at the world is so beautiful. You don’t have a mean or judgmental bone in your body. Everyone you meet gets the benefit of the doubt at first. Everyone you smile at is filled with joy. Your aura is infectious, Brielle Rae.

And though you don’t say a word, I know how much you love me back. I know by the way you smile when you see me. I know by the way you come sit next to me on the couch and put your head on my shoulder. I know by the way you lie next to me and snuggle close. I know by the way you grab my hand when we are walking through the mall. I know by the way you come up behind me while I am washing dishes and hug me. 

You do have your moments. This new thing you’re doing lately when you’re anxious, Bree, where you squeeze my fingers so hard I yelp, is getting old. So is this staying up past 10 p.m. on school nights! Mama needs her sleep. And I’m really getting tired of washing your bed sheets almost every day. But we’ll muddle through it. 

We all have our issues. I have my own. I’m stressed and anxious and you sense that. I’m sorry for all the times I lost my cool. I’m sorry when I snapped at you last week for squeezing my fingers. I understand you’re trying to tell me something, we just have to figure out how you can do that without nearly breaking bones! And I’m sorry I’m no longer answering when you make that “Ah!” sound, beckoning me. You have to learn to use your communication device. You’ll never do it if I keep enabling you. 

I had a harsh wakeup call this past year, when I met with your teachers and case manager to discuss your progress. Because, at your age, we also had to discuss your eventual transition into adulthood.

“Where do you see your daughter in the future?” the case manager asked me. And I gulped, baby, and I teared up, as I struggled to give the right answer. 

Above all, what I want most, is for you to be happy. I don’t have all the answers right now. But I promise you I have started to think about your future and will plan for it. I promise you, you will always be loved and cared for. I promise you, I will do everything possible to keep that smile on your face. Because that smile lights up the world.

I hope you can read this some day. Hope is always there. You are the reason I never give up hope, Bree Bree. Because you are so smart!  You never cease to amaze me. At 15, you are doing things I did not know would be possible.  The sky is the limit. I will never stop believing in you. 

Happy Birthday my love! I can’t wait to celebrate with you.

A version of this piece first appeared here.

Things I Wish I’d Known on Diagnosis Day

Receiving a diagnosis of Autism Spectrum Condition for your child is life-changing. Even if you know, deep down, that there is something “not quite right: with your child, and that something is probably autism, actually hearing a qualified medical professional say the words can take the wind from your sails. For a second or two, the world stops turning. Everything moves in slow motion. The words reverberate around inside your head. Autism Spectrum Condition. Autism. Autistic. My child is autistic.

And then the questions begin. Only by then, there’s no one to ask. You have, more than likely, been diagnosed and dumped. We were given a few leaflets and websites and sent on our merry way, blinking into the rising sun of the dawn of our new lives. We had questions about how this would affect her schooling, how it might hinder her speech development (already delayed, but offered no extra help with it), and who we could speak to if we had any more questions. We never really got the answers to these.

But, the answers I really wanted to know were more personal. How will it affect her future? Will it change us as a family? How will we cope? We’re only around 20 months into our post-diagnosis journey, but if I’d have known then what I know now, it might have just seemed a little less daunting. Here is a list of things I wish I’d known right back at the start…

It will be OK! I would have loved for someone to tell me this in those first few minutes. I probably wouldn’t have believed them at that moment, but to know that it had been said and to be able to pluck it from my memory when needed would have been useful. It can take days, weeks, months and possibly even years to come to terms with a lifelong diagnosis, but for all the ups and downs that will happen, it will be OK. It’s nothing to be scared of. Don’t get me wrong–you will feel scared. You’ve just crested the top of a giant hill and now you’re freewheeling down the other side, unsure if your brakes will work. But, when you stop to think about it, it’s just some words on a piece of paper. Use those words to make yourself stronger. Use those words to get the things your child needs. You will have to fight, there will be times you wonder what on earth is happening, but don’t be scared. Be empowered.

It’s not a magic key. People often say that having a diagnosis is the key to getting support and services for your child. Don’t be fooled. Yes, having those words written on official-looking documentation means that there are more options open to you, but don’t think you won’t have to fight to get these at times. Diagnoses are increasing; funding is decreasing. Service providers are limited in exactly what they can give and several families will be fighting for attention. Waiting times are long, appointments scarce, therapies lacking. You will need to shout, and shout loud.

I’ve learned more about me. I’ve always really admired parents of kids with special needs. I used to think that they were superheroes. And they are. But, guess what? They’re just parents, doing what parents are meant to do. They take care of their kids. They do everything parents of typical kids do, albeit in a different way, more often than not. Feeding might be through a tube rather than on a plate; potty training might come a few years later than the “norm”; the sleepless nights may well continue well past the baby stage (and may never end!); schooling may be at home; socialising might be in special group settings… Some children need constant care, 24/7 and their parents just get on with it, because, well, what else can they do? And I have learnt that I can do this. Even in the times when it feels as though I can’t, I can! I have amazed myself with my resilience at times. I am growing a thicker skin and a louder voice, because we have to make ourselves heard.

She will still grow and change. Yes, some things might be delayed, or maybe not even happen at all, but she will carry on growing and developing, just as other children will. Her personality will develop, she will develop a great sense of humour, she will be loving and affectionate, and stroppy and demanding! Because, guess what? She’s a kid!

I’ll find new friends. Before diagnosis, you might know one or two other people who have a child on the spectrum. At the point of diagnosis, you’ll probably never have felt so alone. But, once you start to emerge from your bewilderment and start looking, there’s a whole other world of people in the same boat out there. I find being sociable quite tricky, but I’ve forced myself to get out and go to some support groups. I’ve found new friends online–and, even though I might never meet them in “real life,” I do consider them friends. I can talk to them about things I can’t with my “real life” friends, because they just get it. I’ve even grown some sort of community of my own through my blog and Facebook page. Other parents ask me for advice! You might need to look for them, but they’re out there–your tribe.

She will always amaze me. I often find myself sitting and watching her, playing, singing, sleeping, and I wonder to myself how we created this amazing little being. Yes, her brain is wired a bit differently, but how cool is that? A very wise person said that these children are the ones that will go on to find the cure for cancer, or the solution to our energy crisis. They will explore our world, our universe, going further than anyone before; they will create technology that will revolutionise the world. The world needs people who think differently, who are different. Even if she never achieves the conventional idea of greatness and success, she will always be amazing to me; just to get through each day with the challenges she faces is awesome.

It’s what makes her, her. I get that some people wish there was a cure for autism. I get that life can be really, really tough, and if only we could take away those difficulties… But, for me, to take away the autism would be to take away my child. For me, autism isn’t something she has, it’s something she is. It’s a part of her. I don’t actually like the term “autism spectrum condition” because it implies it can be eradicated with some cream or some therapy. And I don’t like “disorder,” which implies that there’s something wrong with her. There isn’t. She’s living in a world that isn’t geared towards her; it’s not her that’s wrong! If she was “cured” of her autism, she wouldn’t be her. I love her just as she is.

How My Son’s Autism Changed Me

Two years ago, we were told my son (then age 5) likely had autism. It came out of the blue, and I found myself thrown into a world that I had little understanding of. Sitting in the doctor’s room, I had no idea of the journey it would take me on or what a personal impact it would have on me.

I had been going through a tough time and felt like my life had become stuck, as I struggled with being a working mum. I had been seeing a life coach and just the month before we had done an exercise to imagine my future self, and I had made a list of the things to focus on. I was intent on becoming the person I had imagined myself to be.

Suddenly, I was focused on finding out more about autism, applying for an EHCP, battling the school, which wanted to exclude my son for challenging behaviour, and attending the many assessments required to get a diagnosis. It was hard to think about anything not linked to autism, and I quickly forgot all about my list. How could I think about my future self when there wasn’t even time to think about my present self?

My son is now in a much better place and life has become a little calmer. He has the right support in a new school and we understand more about his needs. Recently, I found my list and was amazed to realise that helping my son had helped me move closer to my future me, not further away.

I became connected. I met other parents through online forums and local support groups. Shared experiences and words of encouragement have helped me realise that I am not alone. Realising that many people are experiencing challenges that we don’t know about, I now take more time at work to see how the people around me are doing, rather than just focusing on the job. This has led to new friendships, and I feel more connected that ever before.

I learnt how to take a breath, slow down, and make time. At work and at home I found ways to do less, and started to use mindfulness to focus on the present rather than worry about the future or the past. This also means that I now try to just do the critical things that really need my attention, and have learnt how to say “no.” Funnily enough, I am now less stressed and am achieving a lot more with a lot less effort.

I started to give back. I shared my experiences in a blog, and now publish a weekly newsletter of blog posts and articles from other parents. This has allowed me to help other parents know that they are not alone, and to find answers to the many questions that they have. With an increased understanding of anxiety, I am a champion for mental health at work, and I have been able to help a number of people struggling with their own personal challenges. Helping others has allowed me to take some positives from our own experiences.

I stopped comparing. My family life is different to most of those around us, and I have accepted that there are many things that other families can do that we can’t. Before all this happened, I had been putting a lot of pressure on myself to be promoted, as all my peers had already made this step. I now know that their success is not my failure. We just have a different path.  Mine is on a scenic route that is allowing me to learn so many other things that I wouldn’t have if I had got my promotion earlier on. Rather than focusing on the things we can’t do or haven’t happened, I try to celebrate the little moments and appreciate all the things that have happened.

Life has been tough, and we still have our tough times. However, I know that I have changed for the better as a result. In facing the many challenges, I have come unstuck and now understand that taking time out to connect with the people around me is the key to helping me move forward.


Elementary Teacher Creates Sensory Chair for Students

The Raymond Ellis Elementary School in Round Lake, Illinois, recently made waves on Facebook when it posted a photo of one of its teachers with the “sensory chair” that she had created. Miss Maplethorpe teaches in the school’s Speech and Language Department, and she used tennis balls and cloth to create a chair for some of her students with sensory issues. As the school stated in its post:

Sensory seating is used for students who may have difficulty processing information from their senses and from the world around them. Tennis balls on the seat and backrest provide an alternative texture to improve sensory regulation. Students with autism spectrum disorder, Down syndrome, sensory processing disorder, etc. may benefit from this seating option.

Notice the school’s use of the word, “may.” As many people on Facebook were quick to point out, this chair looks uncomfortable. However, those experienced with sensory conditions disagree, explaining that some people find “typical” chairs extremely hard to sit in because they require more sensory input than just a flat surface. Sensory seekers often get comfort from objects that those without sensory conditions don’t understand at all — i.e., objects such as rocks and Legos.

As we all know, every person is different, and this chair may be too stimulating for some, while not stimulating enough for others. For more information, please see the post:

Miss Maplethorpe, from our Speech and Language Department created these chairs for our students that have sensory…

Posted by Raymond Ellis Elementary School on Thursday, January 26, 2017

Autism: Don’t Force Me Into Your World Before You’ve Experienced Mine

I am a strong believer in Early Intervention for children diagnosed with autism and, in fact, any other condition that a child is diagnosed with that requires extra support.

Early Intervention doesn’t have to mean thousands of pounds forked out by the NHS or the LA for access to specialist treatment. It doesn’t necessarily mean that the child has to have XYZ therapy to be able to access life, as we know it. Although that would be fabulous, wouldn’t it?!

Let’s go back to basics here, because all these children really need is support and understanding from the people who are with them the most: parents, teachers, grandparents, peers and siblings.

Children who are forced to conform into a society that they do not understand are going to lead a very confused life. It will create greater problems and difficulties for those being made to conform to anyone’s idea of normality. Suppressing a child’s way of life is creating a monster. A great big monster that, one day, simply will not be able to cope in the world that they were forced to live in.

Entering their world and seeing things from their perspective will only create a positive outcome. Before you can lead a child into “our world” or “your idea of normal,” it is crucial for you to experience their “normal.”

Experiencing the things that the children take great pleasure in will enable you to form a trusting bond with that child. In time, when the child knows that you understand, they will begin to WANT to enter your “normal.” Tell me, please, instead of trying to make children sit still on their chairs, hands in their lap, looking alert and taking everything in, why can’t you lay on the floor with them and roll cars backwards and forwards for 10 minutes?

“It’s fun watching these wheels going ’round, the colors on the metal are creating pretty patterns when they hit the light shining through the windows and are spectacular to look at out of the corner of my eye. The reason I do it so much is because I am enthralled with how these wheels work, and absolutely mesmerized by how the light shining on this piece of metal can create rainbow patterns on the wall that is otherwise colorless. I want to show you what I see when I lay here. I want to tell you, but I cannot find the words to express how I feel. Sometimes I just wish you’d lay here with me–is that too much effort? Is it too much to ask? Do you not see what I see?”

“If you cannot see what I see, how do you expect me to see what you see?”

“Life is a two-way street, you know. I don’t want to be outside the classroom because I cannot sit still whilst you read a story. I really don’t want to be over here on my own, lining up these books whilst everyone else is taking part in group work. I really just want to be included somehow, but that’s up to you because I’m still little, you see, and I haven’t yet learnt how to problem solve. Could you help me, just a little? I promise that soon I’ll try the things that you’re asking of me, but I just need you to understand and accept me first.”

The number of children being diagnosed with autism is increasing rapidly. As research grows and more is understood, more children are identified as having autism than ever before. We really need to change our outlook on “normal.”

Children need extra support in schools; the SEN budget has been crippled to such an extent that even the children with more severe needs are being turned down for extra funding. Early intervention, early understanding and acceptance are all vital. If the child doesn’t get these important things early on in their life and in the educational setting, their behavior may spiral out of control. The child may end up being excluded for behavioral reasons and moved to schools with policies that completely defy the techniques that are necessary for our children.

It’s quite simple, really. We need to stop making these children suppress their natural instincts, their natural abilities and their outlook on the world. Their way isn’t wrong, or bad–it’s simply theirs. Who are we to take that away from them? Why should we force them into our world without fully experiencing theirs first?