momtuition

Posts Tagged ‘Autism awareness

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.

===

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.

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.

My open letter to the Hon. Minister of Education, Dr. Jacqui Quinn-Leandro…

I’m saddened and distressed by the state of affairs with regards to special education in this country.

We hear “It’s a priority” so often and still nothing gets done so I’ve now become numb to the promises made. I guess one thing can be said – There’s been some consistency where this issue is concerned and that is, nothing gets done. How tragic.

This year I made a special effort to listen to the Hon. Minister of Education, Jacqui Quinn-Lenadro’s speech regarding the recent budget. At one point, the Minister expressed how painful it was for her to see an unfinished structure at the Antigua State College campus for such an extended period. Painful! It pains her to see an unfinished building – that I may add – she’s right, it should be finished – BUT – perhaps I missed this, but I’ve never heard the Minister sounding this pained when she talks about special need children and how they continue to be shortchanged by the education system. Children! Not blocks! People! Or is it just the parents who should feel this pain? Newsflash! We’re feeling it! Newsflash! We can’t take it anymore!

So, since we’re on the subject of pain. Here’s what pains me…

The way the authorities run to their back-up responses of arts and crafts, vocational when the subject of special education comes up. Arts and crafts/vocational, though good is not the be-all and end-all of our children. Are we as parents to assume that that’s what it means to you – And – that is the breadth of the experience they will have in the system?

I am saddened that you and too many others continue to apologize and make excuses for the lack of any real, and thoughtful plans to address the needs of these students – actions that continue to be disastrous for so many. Quit holding out the “Coming Soon” carrot stick! We’re not rabbits! After all, at what point should we get fed-up of hearing “We’re working on something” or “We’re looking at it”. So you’re looking at it, we’re looking for it and our children get absolutely nothing from it. Just great! Words don’t help our children. Good programs/policies that are enforced do.

Here is your record…

You started out by saying the Ministry of Education will be making special education a priority. Every time I think of this I remember a quote from Mahatma Gandhi which says; “Actions expresses priorities”. My interpretation of this is that people take action on the things they deem important. I guess in a sense the Ministry’s inaction has pushed me to keep fighting for my child’s (and others like him) educational rights. So I’m going to keep demanding, over and over and over again for better more meaningful change. “We don’t have enough money” is no longer acceptable or defensible for bad education policies and programs.

You then said that you will be setting up a diagnostic center: We’re still waiting for this to even start. By the way, should we be concerned by the track record of the new public library? In a Daily Observer article on November 19th, 2011 the Minister stated: “Our fine team at the Board of Education has just completed an estimate of the cost of converting the building (referring to a building on Nugent Ave.) into a functional child-friendly centre, and we have included this expenditure into the 2012 budget,” – What happened Minister? Ok… You missed the ball in 2012 and again in 2013 – But… Believe me folks it will happen in 2014! Give me a minute please because I’m gagging on this giant-sized pill I’m being fed now. I’ve said this before – But – year after year we hear of an education budget but it’s difficult to say whether there is any correlation between the amount spent on the education system and its ability to be effective in responding to diversity. So you don’t have enough? Let us see what you’re doing with what you have. It’s your responsibility to tell us.

A Special Education Council was put in place… Good move: An advisory council could potentially assist the Ministry with drafting policies/programs/plans/reviewing budgets and giving guidance (relating to special education) on how to put those plans into action. Where I think you went wrong: Instead of looking as far as the eye can see with regards to assembling a diverse group to sit on this council – You, looked outside your office door. That‘s the only conclusion I could arrive at to explain why you would elect a senior executive within the Ministry as the Chair of this council – Added to that the other members (with the exception of one) are all Ministry execs.

By all means, this is not an attack on the competencies of the individuals who sit on the council but they are Ministry staffers and are conflicted, therefore, in providing independent advice to you. The council is unlikely to recommend actions deemed unfavorable by you or criticize any decisions that have been made by the Ministry. Therefore you and your team cannot receive the objective advice needed in order to make intelligent decisions. This clearly demonstrates a lack of understanding of the processes of thoughtful planning which the provision of special education services require.

More teachers have been trained in Special Education: This is absolutely great! But Minister, please explain why this benefit hasn’t trickled down to the point of making more of a difference for our children who are in the classrooms now. How do these new specialist teachers entering the system fit into the overall plan? What is the big picture? Is there a big picture?

The ratification of the UN Convention on the Rights of Persons with Disabilities: The new political ping-pong – Politicians climbing over each other to see who can be the most politically correct and use the most buzz-words. To that I say; “How convenient.” We don’t address it for years then all of a sudden it shows up in a budget speech. Did we just find the conscience we lost? When Antigua signed on to this convention in 2007, put in place by the United Nations, were we doing it for the betterment of our citizens or was it just for show?

The Ministry has managed to do very little because many parents/advocates either can’t, won’t or don’t know how to challenge them. I have to be honest though, sometimes I feel like I’m being ignored to the point of exhaustion (didn’t know this was possible) within a system that is so inherently flawed that the authorities think nothing about being satisfied with the status quo. It’s embarrassing, the awful reputation our public schools have when it comes to special education. How can we change that?

These children may have a disability and they may need accommodations to access the educational curriculum but they are worthy of the same high expectations that is placed on our typical children. So hopefully you agree that we must have high expectations of education authorities. After all it’s the high expectations that we have today which will prepare them for a life of independence in the future. I refuse to raise a child for a life of dependence on social programs and dollars! Or worse! I very much doubt you, or any other Member of Parliament, would be happy with that situation for your own children, yet so many in government are complicit by their silence on the issue. I’m not wishing for any MP to have to raise a child with special needs but perhaps you would all feel somewhat differently about the matter if you had to.

Here we are, celebrating Education Week under the theme “Every Learner Achieves: A Call for Greater Commitment” but from where I sit it does not appear as if we truly believe in that theme. That every learner can achieve – And when the authorities call for greater commitment. Who is this call going out to? Commitment is not a one-way street. Education officials are always quick to tout the importance of the involvement of parents as stakeholders in the education of their child but when parents do get involved it appears as if your involvement is only wanted on their terms. So we’re “good” once we’re singing from the same hymn-sheet but once I challenge you… Now, I know there are some who have no tolerance for this sort of emotional honesty in communication – But I refuse to give unthinking respect to anyone/group/thing. It’s not happening!

So, no more phony consultations to provide window-dressing for progress. We don’t want that! We want real dialogue that asks all partners to help define the barriers and consider how they can contribute to solving them. I’m ready to do whatever it takes. What about you?

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.

I was pleased to see the follow-up story to the article on special education in Monday’s (Sept. 3) issue of The Daily Observer – And I would have felt this way even if the article had come out against ABILITY. At this point one of our aims is to engage the public. We need this issue to become more important, especially to the people who are not directly affected by it. We have to create widespread understanding and awareness among them. This is not just our problem. Like tourism; education is everybody’s business.

However, when I read the (unfortunate) comment made by Ms. Etinoff, the Chair of the Special Education Council; and I quote: “The group is currently working on a number of initiatives to be announced at a later date.” I can’t help but think… Now isn’t that the story of our lives.

I’m not entirely sure when this happened but somehow, somewhere along the lines, our society has become stuck in tomorrow (future) even though it’s not here yet. Tomorrow there will be this, tomorrow there will be that, tomorrow we’ll have a better plan for your kids – But the question is; who is thinking about today? Let us begin today! We only have that! Don’t get me wrong… Hope is good; it makes you believe in the future, and we all want that – But hope without action will result in absolutely no progress. And alas, that’s where we’re at with regards to special education in our school system.

Fortunately we don’t get to choose to educate the children we used to have or want to have, but we have an obligation to educate all of our children. After all, isn’t that the basis for public education? Come… We’re open.

“The important work of moving the world forward does not wait for perfect men.” – George Eliot      

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” :).

====

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

 

Picture this…

You’re in the bank and the waiting line is loooong. You just couldn’t avoid going in today and as luck would have it your child, who gets upset by crowds and noise, is with you. As soon as you opened the door and saw all those faces you held your breath. Your child starts making a certain noise, not quite a scream but you know there’s one not far away – You whisper to them soothingly; “I’m sorry honey but mom has to do this now”. Then you start reciting the lines from “The Smartest Giant in Town”, one of his favorite story books. This appears to be working for now. You’re at the end of the line.

Your child is beginning to get a bit agitated. He’s now putting his hands over his ears and closing his eyes but for some reason he can sense every time the door opens and closes because he opens his eyes to look – He doesn’t particularly look at the person coming though; more just watching it open and close. It’s almost as if it’s interrupting whatever he’s trying to concentrate on. For now you’re just relieved that he’s not screaming at the top of his lungs. Ok… A bank employee is headed your way – You’ve finally mustered up the courage to ask if you can “jump the line”. Just as soon as you’re about to open your mouth you hear a LOUD SHREIK! It’s your kid. The security guard is locking the door. The bank is closed. You want to shout…NOOOOOOOO! And for a second you think you did but nothing actually came out of your mouth – It was just hanging open. The employee stops and asks… “Miss, is everything ok? Can you get him to quiet down?” By this time you have the attention of just about everyone in the place.

Your kid is still screaming and many of the onlookers are “shooting daggers” at you. You can hear some clearly reciting the chapter; “If That Was Me… Anyway My Kid Would Never Do That!” – Taken from their “I’m A Better Parent than You Manual”. You go on to explain to the employee that your kid has special needs and he gets upset by crowds and  right now he’s being over-stimulated and you want to know if it’s at all possible for you to get your transaction done now. Your kid is still screaming. The employee’s response to you (not really answering your question); “I’m so sorry Miss but you will have to take him outside if he doesn’t stop screaming. You’re response; “YOU’RE SORRY! What exactly are you sorry for? That you don’t seem to give a shit or that now, after standing in line for what seems like eternity you now want me to take my kid outside? Which one is it?” Yes… You said all that… In your head though.

At the same time a lady taps you on the shoulder and says… “I’m up next you can take my spot. You stare at her and your eyes well-up. You can’t bring yourself to utter any words but she knows you’re thanking her and its coming from the kindest place in your heart. She touches your arm and says to you quietly… “I have a daughter with autism, I know how it goes.”

This is the bond of the sisterhood – A sort of exclusive club – A club that chose me. If I had the choice I never would have chosen to join it but now I’m bound by a deep connection. That “THING” you feel when you meet someone else who has a child with special needs.

The conversations are easy. This mom gets “it” and you can just talk without a ton of explanation.

The excitement you feel when you hear their kid did something awesome. You know what that feeling is like and you want it for them as much as you want it for yourself.

The mom at the church you were invited to (by a friend) who comes looking for you after you’ve taken your child outside to burn-off-some-steam. She says to you; “I know the feeling but don’t feel pressured to leave, the message is for him too.”

The tight hug you gave to the mom you just met in person for the first time but to whom you’ve spoken to for hours on the phone – Revealing stuff you’ve never broached with some of your closest friends. A mutual friend put both of you in contact.

Laughter and sometimes tears, this sisterhood of women nourishes my soul in ways that only those who are familiar with the truth of my circumstances can.

These are the ties that bind us.

I’m so thankful for all of you. I don’t know how I would do it otherwise.

 


Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 57 other followers

Top Posts & Pages

Yes… I tweet too

Error: Twitter did not respond. Please wait a few minutes and refresh this page.

%d bloggers like this: