Tag Archives: emotions of raising a child with special needs

It’s a jungle out there

Things seem to have come a little off the rails. I cannot recall a time I last felt like this. It is the start of a new school year, new teachers, new routines – they all bring about change for the family. Everyone has to get into a new routine and find his or her rhythm.

My son however is taking longer than the rest of us to settle which is normal. It can take up to 6 weeks. But for the first time in a long time, I find myself worried more than usual. I am not sure if it is the amount of things that seem to be bothering him; his diet has gone pear-shaped and he is pushing back all the time. He is having problems with another child at school. His writing is still problematic and we are in the process of trying a computer. The jump in schoolwork seems to be immense. Homework is taking us hours. I am teaching him, I am not a teacher. He is becoming more and more aware of how different he is. He is asking questions all the time. He is emotional and moody. Yes there are other changes; he has stopped play therapy and physiotherapy, two components that have been consistent in his life for the last 3 years.

I know these are big changes for a child with Autism. Yet I find his moods getting me down. The screaming and shouting and whining, makes me feel edgy and I am snappy and impatient. So I try to sit with these feelings and see where they are coming from.

I know it is something I have felt before; I have been here before. I recall I feel like we have been making such good progress. The last year I have been seeing the wood for the trees. All of a sudden though I feel a bit like I am in a jungle. I am feeling overwhelmed, and then it hits me, I am scared. I am very, very scared. I feel a bit like we are at the beginning when it was all new and scary and overwhelming. I have a panga in this jungle of mine and will cut down anything in my way and sometimes I even want to attack those close to me. I am masking my fear with anger.

So what am I scared about? I am scared as I see how far behind my son is, I am becoming more and more aware of the severity of his learning problems. I feel possibilities closing around him and me. I am scared it will never get easier and year-on-year it will just get harder. I am scared I am not handling the emotional aspects of how he is interpreting and internalising his difference well enough. I am upset with him, as I do not think he is trying hard enough and I know he has so much potential.

So where to from here? I am a planner. I like to have an action plan. I know that I should wait and see. It can take up to 6 weeks. But in the back of my mind, I wonder about relooking medication, I contemplate getting a remedial teacher to help with homework, I really, really need to get his diet back on track. But I am tired of the fighting.

Somewhere though in all of this I need to sit with the fact that I am scared. The best way I can help him is to be calmer and less scared. Yet I am not sure how to do this? I know being scared does not help either of us, but with the daily reminder of all his shortcomings, and the list seems longer than usual, it feels like it is harder to cope. Then there is the loss that special needs parents are so familiar with, the loss of dreams we may have for our children. I also realise that at the beginning of this year, there is another loss for the both of us, the loss of play therapy. It gave me the knowledge that there was someone else thinking about my child in a different way. It contained me. The loss for him, I surmise has made him also feel less contained and he is now forced to process a lot of his difference on his own.

Reflecting on this article there are so many thoughts and issues affecting both of us at this time. I suppose it would be concerning if in the face of it all, I was not scared. I have learnt that having a child with special needs, is a cyclical journey – a lot of what has been addressed in the past often comes back again. I feel like I am back at step 1, with the where to now? It is a new set of circumstances that has brought back old demons. There is a difference though, I have more knowledge, I have a support system, I have this space. Maybe most importantly I have the knowledge that I can and have done it before and although I feel tired and don’t feel like the fight, I know I will persevere.

Yes it is a jungle out there. Often the path becomes lost, never mind trees or woods, it is just a jungle of emotions, to do lists, shortcomings and demons from the past. We think we have dealt with an issue of ours, a feeling, or an issue of our child’s, but they can often resurface, catching us off-guard. But special needs parents are super resilient, so sit with the feelings, have your off day or week, then when having to go through the motions again, remember you have been here before and made it through and will make it through again!

A year of recovery

Naturally having a child with special needs is very stressful. In truth everything about it is stressful.

It impacts on my abilities as a parent and it highlights my deficits as a parent. Not to mention the impact it has on me as a person. These deficits make me constantly reassess my life and my self.

It impacts my other children and family in general. Many psychologists are of the opinion that siblings of children with special needs themselves have special needs. This is due to what they are exposed to, the lack of attention they may receive, how special needs in the family affects siblings’ emotions and anxiety, the family environment that ensues as a result of a special needs child. The effect of special needs on siblings cannot be underestimated, some siblings develop close bonds with their special needs siblings and others cannot wait to break ties and get away from them and all they represent. There are interesting research papers done on how many children with special needs siblings end up working as doctors, nurses or in a general industry of helping others. As a parent I have to be aware of what my neuro-typical children see, and sense, hear and feel and what the long-term impacts of our situation and how we deal with it daily, impacts them as well.

Then of course there is the worry about my special needs child. The list is endless. In the short- term; will he be okay today, be well behaved today, have no meltdowns today. The medium term; will he manage, cope, make friends, what school will he go to, what is best for him. The long term sometimes holds scary thoughts for me. Will he be on medication forever, what other issues will we be faced with, will he deteriorate, will he feel like an outcast, the list is endless and I try not go there. I rather try to keep positive and keep it limited to will he succeed at school, will he succeed in life.

Of course there are the tangible concerns of financial pressures, medication and diet. Some days it feels like a constant worry. There is often heaviness in my heart and even in good times and upward periods, I find it hard to totally let go, as I know there will be a downward swing and I can never anticipate what the trigger will be.

As women gain more equality in the world, they tend to take more on themselves. This increases the amount of things they have to get done on a daily basis not only for themselves, but their jobs, their families, their husbands and their homes. Naturally life can be stressful and living with special needs is fraught with additional daily stresses. We all handle stress differently and I know myself, I am A-type personality and I put pressure on myself. I also want to do more and more and my limitations frustrate me. When it comes to my stress, I do also not handle all life throws at me with a breezy and carefree attitude. Even though I have all this tension in my life I think even with my A-type personality I handle it (these two sentences seem contradictory). I eat well, which keeps me healthier from the inside and helps my moods. I exercise frequently, which is a huge stress reliever for me. My husband and I get to spend some really great and quality time together. I have created a support structure, which is pivotal to my sanity.

Yet stress impacts my health. I thought it did not but the last few years have had an effect on me. I run into health problems. Doctor’s comment on what stress is doing to me and tell me I need to get a handle on my stress. My blood counts and stress hormones are in trouble. Yet getting a handle on my stress seems to compound it.. The kind of stress I have in my life cannot simply be walked away from; it is not a job I can go and resign from. I am working on myself to change how things affect me. I have learnt to say No! I have lessened the load. I am following my husband’s advice and where possible only doing, what only I can do. I am trying to make this year the year of recovery for myself and working on improving my blood levels and stress hormones. I also know life, my family, my home, my special needs child and the stress that comes with that are here to stay. As is the person I am. In spite of all this stress I would not change this for the world.

So all I can do is to continue to try my best to manage the situation I have. Focus on my year of recovery. Pray for a break from the chaos and stressful experiences from the last few years. Remember many others have been in the same situation before. And hope it all comes together.