I had always known Oscar was a little quirky and I loved the way he saw the world. However, the more time I spent with friends who had children on the Autism Spectrum, the more traits I began to recognise in Oscar. By the age of 5 I noticed that he was finding certain tasks at school challenging such as timed maths tests, (the reason as it turns out his fine motor skills were a little delayed). I was keen to get an assessment at this stage – just to rule out any challenges but unfortunately Oscar’s dad was reluctant so we didn’t get one.
Like many parents, I was keen not to label my child unnecessarily, but when Oscar was 6 we were called to see his class teacher who sat us down and described the difficulties that she felt he was facing in the classroom. It was her who mentioned the need for an assessment to rule out any sensory challenges. This time we went ahead and Oscar was diagnosed with Sensory Processing Disorder.
Jump forward a year and I started to notice in the August just before school started that Oscar was having real anxieties about returning to school. Again I sought help and was told Oscar had Separation Anxiety Disorder and he started CBT (Cognitive Behaviour Therapy) with a therapist for a while.
Oscar transitioned into school, however this brought it its own challenges; He found the relationship he had with his teacher was extremely challenging and this fed the anxieties which went on to fuel a severe OCD (Obsessive Compulsive Disorder) episode.
After the multidisciplinary assessment was completed, Oscar has been diagnosed with Sensory Processing Disorder, Separation Anxiety Disorder, Obsessive Compulsive Disorder and Asperger’s Syndrome (part of the Autism Spectrum). Now we have the final assessment results we have been able to put a good experienced support team in place to work with him – and us as his family to support him and help him learn coping strategies for the challenges he faces.
At the time of receiving the diagnosis I wasn’t really phased, in fact I felt relieved, because for years I had known this but the specialists had dismissed me when I queried if ASD was a possibility. I also mentioned it to Oscar’s dad which was also dismissed.
I firmly believe that as mothers, we often have a feeling for these things as we are the ones who are with them the majority of the time. It’s only now almost a whole year later that I feel angry, sad and frustrated – but these feelings are largely impacted by the responses of others.
I look at Oscar and I see my amazing boy who is funny, clever, lovely, cheeky and so much more, yet since having Oscar’s diagnosis others look at Oscar and see Autism… They miss out on so much and it annoys and frustrates me. They exclude him from so much and it angers and saddens me. They shy away from us as if special needs is contagious and it just breaks my heart. Almost a year later I am still grieving and sometimes I wish I’d never done the assessment but I know it was the best thing to do for my Son so I must deal with my feelings and move forward with my beautiful children to reach a happier life filled with love, acceptance and hopefully inclusion.
I found that joining a couple of Facebook groups here in Dubai was really helpful to talk to other parents who know how I feel without judgement. They understand the anger and frustrations, and they too have experienced the stares and exclusion. They have laughed and cried and fought the same fights as me and they have also given me some insights, words of wisdom and encouragement. We also love to share success stories because there are many of them as well and I would definitely recommend them to others.
Sadly few of these groups actually arrange any sort of meet ups or coffee mornings which I think we would all find helpful. I did try to encourage my son’s old school to get the parents of SEN (Special Education Needs) kids together but for some reason they were reluctant to do so which is a shame as it would have benefited all of us.
Oscar seems happier knowing why he feels and sees things differently to other children and why he is treated differently by adults around him (although he would rather not be). He is happier now that he can advocate for himself and he’s able to explain to those who don’t understand or support him why he is finding a certain situation or proposed events challenging. He knows that there are other children out there on the spectrum and he isn’t a ‘freak’, ‘weird’ or a ‘naughty child’ which was how he has, on occasions, been made to feel.
We have done a lot of research into famous people with Asperger’s and this also helped Oscar understand and accept that different isn’t less but in many cases actually those with Asperger’s have achieved true greatness.
Oscar’s Autism diagnosis has impacted the family as a whole but also impacted each of us personally. For Oscar it has meant he has been able to understand more about himself, educate himself and also better understand why he feels different from other children.
For me it has meant more advocacy, it has also meant having to smile while people talk to me about my ‘disabled’ child. It’s as if he isn’t the little boy I’ve always known, as if someone has swapped him out with a disabled child because that’s how people treat him now it’s so odd.
I have had to learn a lot more tolerance for others. I’ve had moments when Oscar has been really struggling where I’ve resented all of the happy kid Facebook post’s from friends, how your child had a wonderful international day while mine finds it too loud, too busy, too much of a sensory overload and ends up in tears 10 minutes after I’ve dropped him off. I’ve had to learn acceptance for ‘normal’ families just as they need to find acceptance for mine.
Oscar’s little sister Maisie has found it very difficult over the last 18 months as things have been so very challenging for him and this has not only affected him, and us as a family, but also his relationship with his sister. As he has struggled with his own challenges he has distanced himself from her and she has found this feeling of rejection really hard to deal with. She is only 7 and the impact on her has been significant; she feels overlooked, left out, second best, and ignored. She has had other children at school ask her “what is wrong with Oscar?” if he is anxious or upset.
Oscar’s dad has found it very difficult to accept his challenges (and to understand them) and this has put a huge strain on their relationship also but with time things are slowly improving which is great for both of the children and Dean.
But how do I cope? Well, I have to take each day as it comes. We’ve had some really tough times over the last 18 months and had I not taken each day at a time I don’t think I’d have got through. During this time Oscar has shown such courage and bravery that I must ensure I do the same because that’s the least he deserves from me.
My love for my children will see me through anything – I am now certain of that.
I am also very lucky that I have great friends who listen, laugh, let me cry and sometimes even cry with me, and without them I’d have found it a lot harder. I also went to the gym a lot which really helped me but financially meant that I was unable to maintain that but I do try to ensure I do a lot of walking each day (as a mum this isn’t hard to achieve!)
Oscar is currently home schooled so we do all sorts of weird and wonderful science projects as this is one of his favourite topics. Aside from that myself and the kids love going to see movies, playing board games or cards games, going to the park, trampolining and all the stuff ‘normal’ families do.
We don’t have as much free time as we would like due to Occupational Therapy and CBT but Oscar also attends Sailability at DOSC and absolutely loves his time with their awesome team of volunteers.
Do I get any of that all-important ‘me time?’ Isn’t that just a myth? I don’t get me time. I am a single mum of two children and an expat with no family support so it just doesn’t happen.
Finding one to one time with Maisie is difficult and certainly not as frequent as I would like, however when we do manage to work it out we make the most of every minute, girlie shopping trips, a movie and lunch, a few hours at the beach or maybe just a cup of tea and a cake but Maisie knows girl time or not, she is so very loved.
This is so important and as mentioned, Oscar and his therapies can take up a lot of my time.
Along our journey our family has developed real courage! At his worst Oscar didn’t want to live anymore, he felt life was too scary, adults didn’t understand or support him and he was a freak. But despite this, he managed to get out of bed every single day and for the most part he managed to go to school and try his best. My boy has more courage than most people I know and I am in awe of his strength and I’m not sure I’d have been so brave.
It took days of internet searching, calling, emailing, visiting clinics, begging, pleading, crying (and shouting) before I finally managed to find a Paediatric Psychiatrist who actually had experiences with OCDs in children. The ASD, SPD and SAD were the easy things to find help for but the OCDs were not! Most Doctors don’t have the experience necessary to treat a child like Oscar and will simply medicate to the point of submission. We tried a few and saw little or no improvement but after a year we are finally with a great doctor who meets Oscar on his level and works hard to help him understand the difficulties he is facing. Thankfully Oscar is no longer scared of living, finally I can see a light at the end of the tunnel for my little boy but this process has been hellish.
Some therapists, doctors and clinics charge a fortune just for a consultation only for you to find out they are not suitably qualified or experienced in order to support your child’s needs and your child isn’t getting better or showing signs of understanding what he is going through and this can be extremely disheartening.
Our two biggest challenges are the OCDs and SPD both can make public places a real challenge. While at home Oscar feels safe and he faces very few challenges but outside of the home things can be very different. The SPD means that places with lots of lights, music, crowds and those that have limited space to move around present a big problem for Oscar. He doesn’t like to have people in his personal space and it can cause huge amounts of anxiety.
The OCDs mean that anyone who does invade his space and touch him either deliberately or by accident, also cause his anxieties to rise.
Oscar, like many children with challenges, finds it difficult to regulate their behaviour when extremely anxious which can lead to behaviours that to those with little experience of children on the spectrum, can look like bad behaviour.
Some friends have continued to treat Oscar just as they always have, others have taken a step back as if they need a buffer between us and only really make contact by phone. Some have disappeared altogether as if special needs is something to be afraid of. Those who, like me suspected an ASD diagnosis have simply carried on where we left off. As for family, well now that has been a rollercoaster ride of disappointment. I have been told that Oscar’s Asperger’s is “a result of a lack of discipline”, “you need to be firmer with him and he will be ok”. I have been told that “you are an attention seeker and there is nothing wrong with him”. I have also had one person say to me “Yes but if you could fix him, you would wouldn’t you?” but Oscar isn’t broken.
After talking to a doctor friend of mine, I started sending monthly update emails to family and requesting more frequent skype session with the kids, as well as asking for a little support all be it remotely. When our challenges were at their hardest (as you have read they got pretty tough) I felt we all needed a little more support but sadly these were never acknowledged, let alone responded to.
These emails were brutally honest about how much Oscar was struggling and how the rest of us were or weren’t coping, yet no one replied, support wasn’t offered and the requested skype calls weren’t made. We are therefore on this journey without the support of our families it would seem and this fact really hurts, but sadly doesn’t surprise me at all.
My advice to British mums with Autistic children would be don’t give up! The system may fail your child or your family, expenses are huge, finding good care providers is hard, acceptance and inclusion is a challenge but your child is still your child.
He or she are still exactly who they were before the diagnosis that hasn’t changed and your love for them will see you through. Educate yourself, (you’d be surprised how much you can help them just by understanding what they are dealing with.) It will also help you to be able to cope with situations as they arise and you will find you have endless patience when you truly understand why your child is struggling or acting as they are.
The hardest challenge that I’ve faced along the way was no doubt having a suicidal child. Never ever in my wildest dreams had I ever thought I would hear a child of mine tell me they want to die, that life is too hard, too scary and they don’t want to be a freak anymore. It broke my heart and it will be something that I will carry with me forever, and I have never known pain like it. Seeing my child suffer and live every minute of every day in pure terror was just horrific.
Supporting a child with special needs is also a financial juggling act. Finding a good therapist may take two or three attempts (at which point you’ve spent thousands of Dirhams and most insurance companies don’t cover what they consider to be ‘psychiatric conditions’.). It also means tremendous financial sacrifice and well managed therapy appointments in order to gain as much support as you can whilst offering other support personally at home.
We are lucky enough to have a great relationship with Oscar’s therapists who will offer strategies for us to try at home. We have a therapy swing in his room and do lots of sensory play. I also read a lot and talk to a lot about how he is feeling in the moment and what he feels might help, and this enables me to be able to support him without massive costs all the time.
As with any challenge, marriages either grow together and stronger or you grow apart. Often in special needs family’s marriages breakdown as one parent is always stronger, more accepting, more supportive and more courageous. This builds a wall between a husband and wife that once up, is very hard to break down. Our marriage hasn’t survived the challenges of the last 18 months but many others will and there is no reason why not if you are both willing to listen, learn and love.
If all else fails, we would return to the UK where inclusion really means inclusion and Oscar will get to go to school with his peers and be treated as an equal. We still won’t have much support on a personal level but Oscar will at least be supported by the education and healthcare system there.
Up until recently Oscar was in a well-respected mainstream school and had been since Foundation 1. Sadly, when Oscar started to face difficulties with his teacher in year 4 and with a new head teacher in place the school started to push back on offering support for Oscar and inclusion seemed to be moved off the agenda. Over the last academic year, we have had meeting after meeting (both with and without Oscar’s doctors) to offer information and support to those responsible for inclusion and education, however, sadly these plans didn’t work for us and have left us feeling somewhat pushed out of the system.
We fought it, met with people, tried to educate, support and work with all parties however, we felt we were met with judgement and resistance and slowly but surely this started to impact Oscar personally until very recently Oscar’s doctor and I decided that the environment wasn’t good for him and was taking a toll on his wellbeing in general, so I removed him from school.
Despite all the talk about inclusion in schools, authorities can, in some cases be powerless to prevent them from actively pushing parents into removal because “they are private businesses” at the end of the day. Mostly I’ve been left disappointed that children like Oscar aren’t afforded the same rights as other children because it feels like “it’s too much like hard work to be inclusive”.
When asked what I’d like people to know most about my child is this; Different is not less! Oscar may have his challenges, he doesn’t like to be touched by strangers (which in Dubai is a struggle because all adults seem to think it’s ok to touch children). My son is amazing and he has some real talents just like your child or children do. Never underestimate Autism because if you do, it will be you who misses out. Oscar is more than just a label! I would ask you to take a moment to see him for who he is and every bit of acceptance you give to him, he will most definitely give back so much more in return!
Every day with Oscar is an adventure, sometimes good and sometimes bad but always educational. I wouldn’t dare to assume anything but I truly believe Oscar will achieve whatever he wants to achieve in life. What I do know though, is that whatever the future brings, I’ll be right by his side for the fun.
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