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Liane Kupferberg Carter Writer, autism advocate

Liane Kupferberg Carter
Writer, autism advocate

Two days before our 19-year-old autistic son Mickey leaves for sleep away camp, he asks to get a haircut.

No big deal, right? But 15 years ago this would have been unthinkable.

Back then, the barbershop was the scene of some of our worst parenting moments. By 8:00 in the morning of the Dreaded Haircut Day, my husband Marc would already be muttering, “I need a scotch before I can do this” and he doesn’t even drink scotch. Bracing himself in the barber chair, Marc would clench Mickey in a bear hug and scissor-lock him with his legs. Mickey would flail frantically, headbutting his father and screaming like someone undergoing surgery without anesthesia. Customers gawked. One old man snarled, “Rotten spoiled brat.” Marc sweated through his shirt. When the barber declared he was done, I’d take Mickey into my arms. Sobbing and spent, he’d collapse against my shoulder; smearing us both with snot and hair. We tipped big. Very big.

Unable to face a repeat performance, we’d let long months go between haircuts. Mickey’s great-uncle Jack liked to tease him. “You look like a girl, buddy!” he’d say. Some days when we’d walk by that barbershop on our way elsewhere, I could swear that as soon as the barbers saw us passing, they’d quickly pull down the white shade in the window that said “Closed for Lunch.”

But today when we enter the barbershop Mickey sings out a cheery “Hi Dom!” as he plops into the chair. Dom drapes him in a maroon cape, and picks up a shaver. A screen splits in my head: I can still picture that terrified little boy, even as I watch my son, nearly a man, sitting solemnly watching his reflection in the mirror.

I wait quietly, soaking in the sounds of barbershop banter, the sports talk, the sharing of summer plans. It is all so completely ordinary. A radio is tuned to a Lite FM station; the song playing is Journey’s “Don’t Stop Believin’.” I reflect how anyone who’d seen my son all those years ago would never have believed that Mickey would one day request — insist — we take him for a haircut. Yet here we are.

“How’s this?” Dom asks. I stand beside Mickey and glance down; the cape is feathered in a field of light brown hairs, as covered as a forest floor.

“Let’s take it down a bit more,” I suggest. “Is that ok with you, Mick?”

“Yeah, Mom,” he says.

I remember how we used to sneak into his bedroom at night with a pair of shears to give him a trim as he slept. I think of the time he was 5 and we took him to a local performance by the Paperbag Players; we hadn’t known that they were going to perform a new skit called the “The Horrible, Horrendous, Hideous Haircut.” “NO!” Mickey shrieked, and every head in the audience swiveled our way.

Nowadays, Autism Speaks’ Family Services division offers a haircutting training guide for families and stylists on how to make the experience more positive, but back then there was nothing. Fortunately, one of our behavioral therapists offered to tackle the challenge. Mickey was 7 years old. She took him to the next town over — too many negative associations with our local barber — where they simply practiced strolling by a barber shop. The following week, they stood in the doorway. They progressed to sitting in the waiting area, watching other people get haircuts, then having Mickey sit in the barber chair. Eventually they introduced the cape; the shaver; the scissors. It took months, but by the time Kathy was done, Mickey was able to — miracle of miracles! — tolerate a haircut.

“This feels better,” Mickey tells me. His hair is crew cut short; I can see his scalp. I think he’s more handsome with a bit more hair. But Mickey is happy with how he looks, and that’s all that matters.

“Thanks Dom,” Mickey says softly. Dom dusts a brush with talcum powder, sweeps it across the back of Mickey’s neck. Mickey stands, turns to me and asks, “Can I have a dollar?”

I give him a $20 bill. He hands it to Dom. “Keep the change,” he says breezily. A man of the world.

“Is Dom proud of me?” Mickey asks.

“Very proud,” I say. “You know what? We’re all very proud of you.”

This whole visit to the barbershop has lasted 15 minutes. But it took us years to get here.

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This is a guest post by Liane Kupferberg Carter. Liane’s articles and essays have appeared in many publications, including the New York Times, the Chicago Tribune, Newsday, Parents, McCall’s, Cosmopolitan, Glamour, Skirt!, and many literary journals. She has recently completed a family memoir. Connect with Liane on Facebook and Twitter, or her website.

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This is a guest post written by: Jonathan Andrews

A survey released to 5 live Breakfast has found that more than three-quarters of disabled students and graduates are afraid to let potential employers know about their disability. It is a classic dilemma for people with disabilities – and it’s one I’ve been facing myself.

Jonathan Andrews

I’m in my third year of an English degree at King’s College London – in fact, it’s less than two months until my dissertation is submitted and my undergraduate days come to an end. I’ve decided on my next step – a career in commercial law – and have already secured two summer vacation schemes at top firms in the hope of obtaining a training contract.

Unlike most applicants, I’m disabled. I have an autistic spectrum disorder, as well as symptoms of dyspraxia.

When I first committed myself to commercial law about a year and a half ago, I was very concerned about being open on application forms, and throughout the interview/assessment process.

My friends and family almost unanimously advised me against being open – or to “disclose”, as they put it – because of a fear that this information would be used to sift me out at the first stage of the application process.

The way they saw it was that no company would want the hassle of employing me – they’d be scared about the effects of autism on my work, and wouldn’t want to “waste” money on adjustments when they could instead hire someone who didn’t need them.

Everyone with autism is affected in different ways – I have difficulty gauging social interactions, such as how long to speak for and how long I should maintain eye contact. Contrary to the stereotype of avoiding looking at someone’s eyes, I often find my eyes can linger too long and make people uncomfortable.

I find it hard working out if somebody wants to interject or has grown bored of my talking but, unlike people with more severe autism, I can read tone of voice very well. I’m not so good at controlling my own tone and can sometimes come across as angry or blunt when I don’t mean to be.

My family and friends made some good points. I do mention my disability when applying for big corporates, but am still hesitant about disclosing to small and medium-sized businesses as they usually don’t have teams dedicated to disability research and understanding like larger firms, or might not be able to afford adjustments.

After attending a number of disability employment events, I was able to meet city graduate recruiters at large firms – including the legal, banking and energy sectors – and learn first-hand about their approach to disability and the appropriate adjustments.

So when applying for commercial law jobs, I’m now a lot more confident about disclosing that I’m on the autistic spectrum because I’m assured the information won’t be used to discriminate against me. Instead, I’m told this information will be used positively to allow me to perform to my full potential if I get the role.

Often I will only ask that my interviewers and assessors be made aware of my autism, and how it might affect my performance in an interview, allowing them to look past certain traits, avoid misinterpreting how I come across, and focus instead on the content of my answers.

If recruiters know, they then have an explanation for behaviour they’d otherwise find odd. Revealing that you are aware of this too will paint you as a confident, mature person with attention to detail and it will also show you have an interest in self-improvement.

That being said, this doesn’t mean I have no concerns at all about being open in my future career. The recent Great with Disability report that reveals that more than three-quarters of disabled graduates are afraid to let potential employers know about their disability doesn’t surprise me.

While I’m convinced that being open makes applying for graduate and entry-level roles easier, I am concerned about the low numbers of openly disabled people in higher levels of the professions; in particular, the apparent lack of any openly autistic partners or counsels in the legal sector.

It might be that nobody with autism has ever reached these positions. It’s more likely that they have, but chose to remain quiet about their impairment or may not have been diagnosed.

Either way, without open role models, I sometimes worry whether I will be able to reach those top jobs, and wonder what it is that is holding some disabled people back.

Though large law firms might have a great attitude, top jobs in the legal sector are largely client-facing, and I can’t help but worry that client concerns about disability play a large part here – so a law firm’s internal positive disability policy may not help.

I’d like employers to understand the benefits of disability – it can make people a lot more determined to achieve goals and the challenges it throws up often force us to become good problem-solvers. A different way of looking at the world is vital. Recent evidence shows how diversity – of experience, background and belief – benefits business. But if people aren’t open about their needs, then they can’t perform at their best.

I choose to tell potential employers about my disability so that, should I require any adjustments, they’ll be available – and I can walk into work and spend all my energy on doing my job rather than hiding who I am.

 

Light It Up Blue for Autism Awareness Month“Light It Up Blue” is a global campaign that sees thousands of iconic landmarks, cities and towns around the world turn blue on April 2 to recognize World Autism Awareness Day. The campaign highlights the pressing need for greater public education and awareness of autism in our community.  

I’m proud to have initiated Antigua’s participation in this campaign for the first time – BUT – I need your help to make it a success and for us to send a strong message to everyone that the Antiguan community is united in our efforts in supporting and celebrating people with autism and increasing awareness about this disorder. 

Need some inspiration?  Here are a few ways you can ‘Light It Up Blue” on April 2! 

  • Get your school involved: Host a “Blue Day” fundraiser at your school.  Blue cake stalls, wear something blue, blue face painting, blue art day – The ideas are endless! 
  • Get your workplace involved: Ask clients and colleagues to take part in a “Wear Blue” fundraiser for World Autism Awareness Day.  Get creative and have some fun!
  • Promote this “Light It Up Blue” campaign via your social media!  Share stories (news or personal ones).
  • Light up your Facebook, Twitter, WhatsApp, BBM profile: Change your profile photo to the “Light It Up Blue” logo or any other Autism Awareness graphic – Check out Google Images, there are tons!
  • Take lots of photos of any awareness activities/events you host: Share photos on Facebook, Twitter, Instagram etc. Would so love if you could tag me (@sackr) in them! You can also email your photos to salma.crump@gmail.com.
  • Purchase autism awareness merchandise and wear/use it proudly! A great range of products available online.
  • Contact your MP or anyone running for office and tell them all about World Autism Awareness Day/Month and why it’s so important to you! 

See… It’s so easy to get involved. 

It’s not only awareness that is being raised when our FB profiles are lit up. We are also helping build understanding of what it means to be affected by autism and building compassion for those with autism and their loved ones. 

On Wednesday, April 2, 2014 (and throughout the month) together – we can unite the world in their honor and for their benefit.  

NOTE: Any funds you raise can go towards an organization of your choice that supports the advancement of kids/adults with autism or help start a program in your neighborhood school, a more inclusive kiddies program in your church… It’s totally up to you!

Great news guys… Kuba told me he loved me the other day.

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I’ve tried but HR has already said “no” THREE TIMES to me wearing this outfit to work

Usually when I would say “I love you” to him he would just say “I love you” back to me. He still has both immediate and delayed echolalia, so I never really knew if he was just repeating what I said or not. I was working late at the office a few days ago and he called to tell me that he wanted Subway pizza… Yeah, I told you he’s very specific. Anyway at the end of our talk I said “I love you” and he said… Wait for it…

“I love you too”.

Witness me having an out-of-body experience…

I saw big cartoon hearts fading into little cartoon hearts. I think Adam’s ribbed cracked a little because my heart grew like twice the size. It was late, so it was just me and the cleaning lady. So I was able to fall apart with just a “side-eye” from her and not under the microscope of my colleagues. 

I could have just died! Although I would prefer for it to be in my sleep and not by a stab wound or gunshot, or anything else that would cause me to feel pain. Just saying…

But seriously guys… I had no doubt my kid loved me but it’s difficult for me to put into words what it felt like hearing him say it. He will be eleven years old a few weeks from now, so I’ve been waiting a long time.

I came right home to give him the biggest hug and kisses.

Thank you God for sparing my life to hear those words from my child’s lips! I’m a happy mama… My heart is filled with immense joy!

“Be happy for this moment. This moment is your life.” – Omar Khayyam 

“I’m happy for this moment. This moment is my life.” – Salma Crump

In the movie The Lion King, Simba goes back to fight Scar for his rightful place in the Pride Lands. It’s one of Kuba’s favorite movies – And if it’s only one thing that he learns from that movie… My hope is that it’s the lesson of courage.

Courage to do what’s right and to stand-up for himself and others.

It’s also something that I hope time will tell that we did a good job in shaping in him. And I think a lot of it will come from us modeling that behavior ourselves.

Before autism, and everything that comes along with it, came into my life I didn’t consider myself to be a courageous person. I really didn’t. Actually, I’m not sure if I now do. Add to that, my private life back then was just that… Private!

Then I became mom to an autist and things changed. I realized very quickly that I had two choices; I could do nothing or I could do something. I chose to do something. Anything! Anything that I thought would help him overcome any challenges he had. I never saw it as a courageous act. I didn’t think I was doing no more than any parent of a “typical” kid would do for them. I was speaking out, I was advocating, I was demanding more for my son and for others like him. From time to time I get parents who would say to me; “I read your blog and I think you’re so brave for speaking out and advocating for your son. Where do you get the courage from?”

I say to them; because I owe it to him.

I remember when Kuba was initially diagnosed, we met with a psychiatrist and he asked what did we want for Kuba – And his dad responded and said that we wanted him to be the best he could be, whatever his best was. I couldn’t have said it better because nothing – ABSOLUTELY NOTHING – in this world is more important to me than knowing that Kuba will be ok on his own when we’re no longer around. It is what keeps us up at night – It’s this fear that drives me. The fear that sometimes fills my mind with thoughts of perpetual unemployment, homelessness, drug-addiction and prison – And I was going to do everything in my power to give my child a shot at a better future than that. After all isn’t that the dream of every parent, to have an independent, happy, adult child who’s capable of living on their own. My dreams are no different for my child with autism. But the attitude here is that they will continue to live with us (parents) until one of us dies. After that it’s “Good Luck Chuck”.

To date no government agency has been able to tell us how education will be provided to our kids once they enter the school system much less what happens to them once they reach adulthood. What we know now is purely anecdotal; and the picture is bleak. There’s very little opportunity for them to fully explore their full learning potential or career capabilities. And just for the record… For those of you who, sometimes with the best of intentions, when autism is mentioned, go to your only source of reference and that is the character, Raymond Babbitt, played by Dustin Hoffman in the movie Rain Man and offer a compliment alluding to the myth that we have nothing to worry about because our kids are smart… Thanks but no thanks. What I want you to do; before you think our situation is not so bad and that we all have little Einsteins and Mozarts who will have us rolling in a pile-of-dough soon enough and then we can do whatever we want. Think again. This is a spectrum of disorders all different to varying degrees… No two are the same and no two have the same differences.

In the process of writing this article I decided to do a bit of research to see what other people had to say about courage. How did they define it? I came across a site that described it this way: Courage: the emotional strengths that involve the exercise of will to accomplish goals in the face of opposition, internal or external.

I like the fact that they highlight that the opposition could be either internal or external. There’s still many of us who have not accepted that our ideas of perfection have not been realized in our child. “If only she would just…” or “Why can’t he just…” When you really stop to think about this, and I hope you do. Ask yourself if you have fulfilled all the expectations your parents had for you – And not that this is right or wrong either. It’s just that sometimes; our expectations are just that; our expectations.

You see, I think that Simba was courageous all along. He just didn’t know it. He initially told Nala when she found him; “They don’t need me!” But when she told him about what his uncle Scar had done to the pride lands, he had to go back to save his people. In his eyes that was the only choice for him. I call this “courage that knows” – Knows the risks that lies ahead but still takes action anyway because the consequences of taking no action or lesser action are unacceptable.

I sometimes end up having very intimate conversation with some moms and dads who I’m meeting for the first time and I’m sure it took quite some courage for them to talk to me about certain issues. Perhaps I would have never found my courage if it hadn’t been for son. Perhaps I would have kept on thinking that courage is something only the people who risk their lives have.

So, I still don’t quite see myself as being courageous – But there is something there, whatever it is, that makes me get out of bed each day, no matter how much I sometimes want to give up and… make another call, send another email, write another letter, reach out to someone who I think can help us move forward. Because like I said; there’s nothing – NOTHING – I will not do for my kid. After all, I owe him at least that.

I have a contagious jungle fever. Some call it courage. Don’t worry though; it’s the one you want to get.

Ok… So this is my final article in the Autism Awareness series and come next year I don’t want to be the one doing this.  Well, yes I want to but I also would like to see more parents, advocates, teachers etc. coming onboard and sharing their insights and stories. You know that whole “together we’re stronger” line? I think the person who first said it was on to something.

I’m like a mixed bag when it comes to Autism Awareness Month. I think, like many other families, we want it to be every month. There’s still this pressing need to raise the collective consciousness past April and beyond. I believe we have made some progress though. Just think about it… The Daly Observer said yes to running this series of articles on probably what is the highest distribution day (Mondays). I was soooo happy because I knew what it meant to me and was hoping it would mean to so many other parents.

We all have a passion for something. Most of the readers of this series, their issue is autism or special needs in general and all the other needs (education, health) which form an intrinsic part of it. Those needs are urgent for us – We live with them every day. Our task now is how we, through advancement, can realistically meet those needs.

As many of you know, I’m a founding member of the special needs (I’m beginning to have issues with that term (special needs) but another day and time) education lobby group ABILITY and… We. Need. Your. Help. It’s in everyone’s best interest that our education system improves. So how do we do that I’m sure you’re asking? Who’s with me if you think what’s needed is a heavy dose in proportions we have yet to fully confront of reality, accountability both personal and governmental.

Many of us have been fighting for a long time – Fighting for opportunity, for change, for a better future for our kids; each sometimes meaning different things to all of us. If I were to be honest with you, sometimes I want to give up. I want to say; “I don’t care! It is what it is.” But then I always think back to the first parent I ever met who had a child (actually 2) on the autism spectrum. I waited an hour to meet her. She could have “blown me off” but instead she made time for me – To talk about my kid and my issues and most of all she listened to me. Every time I think about it, it brings me to tears. I don’t expect everyone to fully understand this; after all you may not have experienced it before. However it is one of the main reasons why I can’t, or better yet won’t give up.

Top of ABIITY’s wish list is carefully thought out, well-crafted solutions that have vision and scope – One that would come about through respectful discussion with a healthy dose of compromise.  We don’t pretend to have all the answers but… We. Want. To. Help. We can’t sit by and…

Watch our kids continue to age-out of a school system that did nothing to help them cope in the adult-world they’re being thrust into.

We cannot to accept this continued indirect and in some cases blatant discrimination of our special needs students.

We cannot accept this continued archaic way of thinking (by some individuals) that, special need student equals a curriculum consisting of arts and crafts and recess.

We recognize that special education is not the only need served by the public school system; limited funding has to cover all children. On the other hand though, we cannot continue to accept that it’s ok for our education system to limit access to some students to accommodate whatever level of effort and resourcing it feels it is convenient to offer.

What happened to the core principle of universality of access; education for ALL? It breaks my heart when I talk to other moms with kids who are eighteen, twenty years old and the system they went through has (for the most part) remained the same today. How can anyone expect us to accept that! We will not be having this conversation ten years from now. Will we? We just cannot let that happen!

So what are you going to do about it?

My advice…                                                                                 

I encourage you to be…

More assertive, not angry

More committed, not blindly and

More open-minded, without compromising your values

At the end of the day; don’t idolize the box so much so that you’re unable to think outside of it.

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My name is Salma Crump and I want to thank everyone for their support, words of encouragement, for all the emails they’ve sent – A few parents sent me some very personal emails and said that I sharing my experiences have helped them. That made everything so worth it. To all the folks who sent me emails saying; I touched a nerve or caused them to think of things they’ve never even considered. Thank you. It’s important that you’re onboard for change to happen. Most of all… Thank you to The Daily Observer for making available your platform so my voice could be heard a littler louder. Truly living up to what you believe – “Let there be light”.

This is the final article of a five-part feature I’ve been writing each week which focused on my experiences raising a child with autism. If you have a story to share, any words of advice to add or questions to ask please do so by leaving a comment or sending an email to: salma.crump@gmail.com

Ok… Bear with me because this is tough and this is probably my first time really addressing relationship issues but I know it’s on the minds of many couples parenting a special needs child.

Here goes…

What I haven’t had the guts (Yeah… I’m talking about guts so it’s DEEP) to write about at length, is what raising Kuba did to our relationship (Charlton and I). And recently I’ve been asked why since it’s such an important part of my story.

If I were to believe everything I read – The odds are stacked against us staying together and I can well understand it.  When Kuba was first diagnosed we never had a single argument about what we were going to do. As matter of fact we never really sat down and made any plans per se. I think we were both in panic-mode mode about what to do. We both were online all the time researching, he would talk to people he’s comfortable with, I would talk to people I’m comfortable with and EVERYBODY else. Actually I think Charlton was the one who found a speech therapist on island that we started using. Then about a year or two into it I became “Chief Navigation Officer”.  A role that I took on with probably everything in me then some – And after that the issues weren’t necessarily fast but boy, was some of them furious.

We finally get him into a school that we’re hoping can help him…

Why are we paying separate fees for the same school?

Because that’s their system and we both agreed to it; remember?

 

Homeschooling is now a thought…

He needs to go to school. Home is not for school.

SIDE NOTE: Who would have thought…? We’re now both proponents of homeschooling as an option if it works for the child and family

 

We decided on a shortened school-week – Two days at school and three days at home. Kuba is an only child and socialization is an important part of his therapy – We get a reduced tuition for school.

So you’re telling me we’re paying almost $600 for him to socialize? That’s what you’re telling me?

 

Kuba, because of his sensory issues is extremely selective with his food. No chicken. No meat. No fish – Actually stopped eating fish then he suddenly became allergic to it – I was the one forcing him to eat fish the day we realized this. Just kill me now I thought.  Found out about his allergy to eggs the same way. I think he wanted to kill me at that time. No rice. With the exception of potatoes; no voluntary eating of vegetables… Welcome five hour dinners. No hotdog or hamburger. No sodas… THANK GOD! With the exception of Mac and Cheese no pasta. And the list goes on and on.

I’ve tried so many things to get him to eat other foods. Some have worked and some haven’t.

Charlton’s one and only strategy… Don’t give him anything else. In other words withhold until he eats what I want him to. Please somebody… Help me to deliver this newsflash to him. It! Does! Not! Work! He will go to bed hungry. Plus I’ve been suffering with migraines since childhood so I’m always afraid of him getting headaches.

He now eats oatmeal but that’s because I cooked it every day for weeks and I would just place it on the table long with whatever (something he liked) he was having for breakfast – He wasn’t forced to eat it. He started out just smelling it then he would take a spoonful and let his tongue touch it. Then after a few weeks I started feeding him. It used to take us over an hour to get through a bowl of oatmeal and sometimes he wouldn’t even finish it.  Charlton thought I was “nut-so”. Thought I was wasting time and food – And Kuba has too many options… Yada, yada, yada. So we would be at the table and he would say, “Kuba, eat the oatmeal! You’re not getting anything else to eat this morning!” At this point I’m saying “ini mini miny mo” in my head trying to decide whether I should say something or give him my best actress “IGNORE”. On some days I’ve realized that you have to learn to pick your battles.

The school is now saying that Kuba can’t come to school unless an assistant is coming with him. I could have told you this was going to happen – Saw it coming. And what did you tell them? You handle it.

Honestly, sometimes he makes me so mad with his you-handle-it-attitude.  I don’t want to make all the decisions. SIDE NOTE: I may delete this line because it may be held against me in the future.

At times I have wanted him to handle to the school confrontations. I wanted him to be the one having the in-depth discussions with the teachers, the tutors, the therapists and everyone else who is a part of our life. Then come home and tell me about it. I just wanted to shut-up for a while. SIDE NOTE: I have a funny feeling about what I just said… The “shut-up” portion… Can’t be good…

And to think he would sometimes call me Castro. Don’t raise your eyebrows. It’s a term of endearment – And I know there’s a compliment in there somewhere. The thing is, deep down even when I was stressed out to the max when were faced with certain issues relating to Kuba – And I was getting the too numerous to mention “Oh My God! You again looks”; I still wanted to do it ALL. SIDE NOTE: I think I should make it clear I refuse to settle. I ABSOLUTELY REFUSE TO SETTLE! I think our kids deserve so much more than what they’re currently getting.

So, on one hand I wanted him to step in and take over and on the other I didn’t want to lose that control. He would do something then I would criticize it because I didn’t think it was done right then he would get mad. I tell you… We’ve had our share of Oscar-worthy arguments.

These days we’re making it work because we genuinely love each other and we tell each other that everyday. We kiss all the time. We plan date-nights. Actually this (date-nights) was Charlton’s idea – A clear sign to me that we needed to make time for us. It’s so easy to get caught up with all the therapy, meetings, and the latest this and that that you forget about your partner’s needs and even your own. We also realized that our son would be better off with the two of us together. Not because of him but for him. I think we initially viewed our personal misery as temporary. We kept thinking, “We have to get through this – We’ll sort the other stuff out later.” To some degree I would say it worked for us but everyone knows that eventually things always come out.

We now recognize that we each bring different strengths to the table and we respect that. In hindsight, now I think about it, our problems were not so far off from those so typical to autism itself, difficulty communicating.

If we’re looking for a tutor I get the calls I do the interviews but we talk about it throughout the entire process and sometimes we end up talking about things we wouldn’t have discussed ordinarily.

He knows when to step in and just make the decisions when he sees me getting overwhelmed – And I try not to over-think it and just go with whatever decision he’s made because I know he has our best interest at heart.

He’s the one that takes Kuba riding, to the football field, let him climb trees (I just couldn’t watch this) and all those other things that I wasn’t putting any real importance on because I had this “militant mentality” (By the way I just made that up but it’s the only way I could describe how I felt back then) about therapy and I had to see it in everything. I have to tell myself that I can’t make him parent like I do and there’s value in his way of doing things as well. SIDE NOTE: I guess he was probably right. Looking back, my behavior may have come off a bit “Castro-esque”.

What advice would I give?

Try to even each other out. You know; compensate for each other’s weaknesses. Ain’t no bed of roses… Don’t get me wrong at all. As Kuba gets older the issues have changed. Plus you’re alive… You’re not dead, so there will always be times when you’re at odds about how to deal with a situation – But what I think will make the difference is both of you remembering not to give up on making your relationship work and that it’s worth whatever effort you can give to keep trying.

We’ve had so many highs but there have been lows too. At the end of the day though I wouldn’t change a single thing; not even my nickname “Castro” :).

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My name is Salma Crump and I’m the mother of Kuba, a nine year old boy who was diagnosed with autism at 3 – I’m a blogger, see what else I’ve said here: www.momtuition.wordpress.com  and I’m co-founder of the Special Needs Education lobby group ABILITY. April is Autism Awareness Month and this is the third of a five-part feature I will be writing each week which will focus on my experiences raising a child with Autism.

Your feedback on each article in the series will determine what I write about for the next. If you have a story to share, any words of advice to add or questions to ask please do so by sending an email to: salma.crump@gmail.com or the editor at: editor@antiguaobserver.com

NOTE: This is the unedited version of the article which appeared in today’s edition of The Daily Observer

 


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