Tag Archives: behavioural problems

The miracle of life

I know we all do it – we marvel at the miracle of life. But I do believe that if you have a special needs child or are close to someone who has a special needs child, have a child or know of a child who has come into this world defying circumstances – you appreciate the concept of the miracle of life, even more. When things go right, it is truly amazing, as so much can go wrong when it comes to new life – from conception, to genetics, to congenital problems to birthing problems. The fact that all internal organs are present and work and that all limbs are accounted for, that everything is where it is meant to be and works as it is supposed to is phenomenal. Most of us when our child is born and is perfect sigh a huge sigh of relief. But in many special needs cases, problems, especially those that are neurological, only manifest at a later stage.

Some of us are never really sure what causes their problems. Some problems are caused by a complicated birth, some are due to a parent’s negligence, such as drug abuse and in some cases there is no reason – it is just life. The saying life is unfair is a saying that few probably really relate to. Those exposed to the randomness of life and powerless situations, really know what this is and how it feels.

My pregnancy, with my ASD son, was normal; I stayed away from all alcohol, sushi and cheeses. I had a normal elective Caesar. My son was born with a difficult temperament, colicky, cranky, and became over stimulated very easily. His milestones were delayed and I always had an instinct he was different.

I cannot explain the stress and doubt when you feel there may be something wrong with your child. You do not want to be alarmist or over react and often it is a waiting game. Just because your child develops differently or slowly does not mean something is wrong. But in the event something is wrong, the shock, even if you somehow knew, when you are actually confronted with the confirmed knowledge, is so overwhelming and heart breaking. I once read an article written by a father, a psychoanalyst that had an autistic spectrum child. He spoke about autism and how the diagnosis was comparable to trauma and I can fully relate to this. The emotions that come with the diagnosis of your child 3 years into their life are traumatic. In our case the trauma reminder continues and stays with us, as there is a daily reminder of the event in having to deal with my son’s problems.

I can only speak of my trauma relating to my sons condition, but I know from friend’s experiences that most parents with special needs children are faced with trauma either upon diagnosis or due to having to continually manage their symptoms, or episode and incidents around their child’s condition.

Parents of special needs kids have children with a wide spectrum of problems including; ASD, cerebral palsy, remedial needs, learning problems, cognitively impaired, downs syndrome, epilepsy. Whilst, the diagnosis helps us manage the symptoms, it does not make the journey any easier or in any way help us understand or manage the feelings and emotions that come with it. All moms and parents generally have a bonding factor. Parents of children with special needs have additional glue that binds us. We are on some varying level faced with similar emotions that are difficult to handle and cope with them so differently. Besides emotions, we are often faced with many other similarities, also of a varying degree, from learning problems, to neurologically compromised, and physical problems.

Even in the face of all of these problems and the traumas we are faced with, even though our children are not perfect, they too are absolute miracle children. For some it is because they have defied death. For others it is because of what they manage to overcome every day and throughout their lifetime. We also cannot forget the joy and love they bring to our lives, and how miraculous this feels. Ask any special needs parent and you will still see the love emanating from them, no matter how hard their circumstances.

When a fully functioning normal child is born, it is a miracle. But what really resounds with me is the miracles special needs parents are faced with day-to-day. When we as parents overcome our children’s adversities and do not let these adversities hinder us in developing amazing relationships with them, it is so special. When the child that cannot speak makes himself understood. When the child that has severe social problems is invited to a party. When a child that is physically compromised manages a physical act. When our special needs children achieve things, no matter how small, in the face of their adversities, it is simply miraculous and oh so joyous. I know I constantly focus on the big picture and worry so much about my son and what he will and will not achieve in life. I really do lose site of these small and everyday miracles. In truth, the small miracles count as much as the big ones do. All the small miracles are what builds them up and is what life is made of.

By Amber Tucker

Lessons in life for all

I do believe we are all given hurdles in life for a reason. I do not always ask why did this or that happen to me? In hindsight I often have an “ah-ha” moment where I perhaps gain perspective as to why something may have happened.

Generally my life has been an interesting journey with ups and of course downs. Easy times and hard times and I would generally say a lot of perseverance on my behalf. Luckily for me up until this point I have come out smiling, stronger and relatively sane (although sanity is subjective.) There are many people who are dealt a hand or lot in life that can almost be, or sometimes is, too hard to withstand.

I have come to understand that we just never know what people in life have endured. In the special needs circles, when it comes to our children, some of the experiences of parents and what they have overcome seem overwhelming. Yes interestingly we are all grateful for our own situations as we know and understand them. Rather the devil we know!

I have had friends with severely compromised children comment that they do not know how I deal with my situation. All I can think is, it is hard but not as hard as yours, funny this phenomenon.

We all have life lessons, and as we age they do not stop. We are constantly faced with growth curves and challenges. If you ask my mother if she thought she would be faced with the types of challenges and things she has to learn as a mature 67 year old women she would say no. But she has learned so much about autism and my son’s differences and this is just an extra, albeit tough life lesson for her as well.

One of the things I have learned in my experience with special needs is that there are so many untold stories and we never know what someone has endured. We have a perception of people based on first impressions or through casual conversation, but so many people have a story of hardship that has moulded who they are. In the special needs circles the stories may be relating to how a parent had to overcome hardships of their own with regards to education and now they are faced with it again. It can be how they battled to have children and the child they now have and love so much has special needs. It can be children surviving death and now being compromised. I am overwhelmed all the time by the stories I hear from fellow parents and here they sit before me smiling and cheerful about life. Some may have a deep sadness or hurt, some may battle more than others but wow these people are amazing.

I started off by stating that I seldom ask why this has happened to me, but I do frequently ask why has this happened to my son? He is innocent and vulnerable, he is so small to face the daily challenges he does. He does not understand why things are so hard for him. He is so frustrated. The growth he has managed and the challenges he has faced in his 6 years is more than some young adults have faced and he still has such a long way to go. Why him?

What will his life lessons be? Will he even grasp them, or may he not even think of them?

All children are faced with so many lessons in life. They are young; they have so much to learn about the world, academically, socially. They have a growth path of schooling, establishing a livelihood, establishing relationships. All parents need to encourage their children daily in life and its lessons. It is the business we are in, the business of growing and encouraging our children and their minds.

I have to continuously encourage my ASD son. He can do everything – he just does not always believe it. He has strengths, which also need to be constantly encouraged. This sounds silly; of course you encourage a child’s strengths. Well with special needs you often lose sight of strengths because you are always trying to decrease the deficit. Temple Grandin in her book ‘Thinking in Pictures’ frequently talks about encouraging gifts of special needs children. She believes this is ultimately where they will establish their livelihoods and will be able to foster relationships. I also encourage my son’s differences, hoping that he will learn to use these as a gift and embrace them as part of life. I recently attended a talk by an unsighted man, who had completed many extraordinary things in life because he had embraced his blindness and saw it as a gift. His comment was that if he were a sighted man he would have been ordinary.

I hope my son realizes his own gifts and that this will be one of his life lessons.

As for me, my road is also a long and complicated one. I have to best equip all my children to know their abilities and have the exposure to realise their potentials. For my ASD son, I also somehow need to just get him to believe in himself, try and persevere. This is not so easy to accomplish in children who only like to do things they find interesting. It is a hard lesson to teach; try the thing you are poor at and do not enjoy again and again and again and you will improve, eventually.

But I do grow with all these hard experiences. When we are experiencing one of our ASD crises, it feels like no growth occurs and I get stuck in the motions and become myopic in my view, not seeing the bigger picture. But when I finally lift my ostrich head from the sand and reflect, I do see growth on my behalf and of course my sons albeit a slow road.

I know one of my biggest life lessons and probably many people, is to not underestimate others. Most adults have a life-altering story and we have no idea the obstacles they have had to overcome or continue to overcome daily. I personally need to not to underestimate my special needs son as he constantly surprises me. I need to not underestimate myself as I accomplish more and grow more than I give myself credit for. To other parents out there I say never underestimate yourselves and what you can endure, get help where you need it and when it comes to special needs, you may not think you need it, but a little bit of help, no matter what it is, can go a long way to help you see more clearly.

By Amber Tucker