Self evaluation is a very positive skill to have. All good parents stop and think at times ‘am I doing the right thing’ right from the very moment their child is born. Decisions about wether to breast or bottle feed, what sort of clothes to put on your baby and where they will sleep are all everyday personal decisions all parents face. And there will always be others who feel you are doing it wrong.
But what if your children are not meeting milestones? Or they receive a diagnosis of any sort that makes ‘normal’ development more of a challenge? What should be a time of needing more support and encouragement often becomes not only the time when others judge and question you more, but it also brings with it an even greater level of self-doubt as a parent.
Did I do anything wrong when pregnant? Was my birth to blame? Did I feed my baby the wrong foods or give them inoculations that damaged them? Should I not have gone back to work so early? Did I not bond with them enoughh or sing to them the right songs?
So many of us have been there. I have too. And even though my twins are now 6 I am still asking myself almost daily ‘am I doing the right thing’?
It seems that at times I am controversial without even meaning to be. Even blogging publicly about my children seems to make some people feel I am damaging them. I am not naive. I am well aware that one day my children could read my blog. In fact I will be letting them both have a copy when the time is right. This is my journey but it is very much their journey too. I actually hope having a written record of how far they have come is helpful to them in their own way as they begin to understand more and question who they are and what their diagnosis means to them. Naomi aalready shows much more awareness and we talk together about her autism, her brothers autism and her brother’s neurofibromatosis. I don’t believe in hiding these issues from her and there is not one blog I would be embarrassed for my children to read one day.
Naomi has recently been assessed and approved for a wheelchair. I never really thought that would be controversial either. No-one seemed to question when her brother got one months ago but somehow because she can talk, she can walk and she attends mainstream school it seems that I am ‘making’ her disabled by putting her in a chair. Maybe I am more vocal about her brothers difficulties, maybe they are more obvious than hers, or maybe the fact he attends a special needs school seems to make it more ‘acceptable’ for him to use a wheelchair. But Naomi has her own struggles and I am not pushing her to use a wheelchair if she is not comfortable doing so. I have asked myself many times if I am doing the right thing pushing her around places where she may be seen by others in her school or community. I know the impact this could have on her far more than she understands at just 6. But her safety, her pain level and her comfort also must be taken into consideration. And whether she is in a wheelchair or walking she will sadly always come across people who will stare, laugh and bully. It is my job to help her cope with this as she grows and develops greater awareness.
My son loves lifts and hand dryers. He craves them much like a smoker craves a cigarette. And so I take him to them. And I let him press the button to turn the dryer on or call the lift for someone. It brings him huge delight. And the majority of people I meet are happy to let him have that pleasure. But the other side of this is that sometimes in life we go into a shop and we have no need to use the lift or the dryers and therefore his sensory craving can not be met. And that results in meltdown of epic proportion. And then I once again question myself ‘am I doing the right thing?’ Do I allow him to have his craving in small amounts to allow me to achieve other things I want, or do I insist on carrying on with my business and that he has to learn that life is not always about him? Everyone has their own opinion on this and people will judge the fact I have deliberately taken him to retail parks just to see lifts and not buy anything. It is a balancing act and I have to live with my son and my decision. So I do what is right for me and him and my family.
People may be shocked to know I have resorted to feeding my six-year-old baby food at times just to get her to eat. I have allowed both twins dummies way beyond an age where it is publicly acceptable, and I have seen to their personal hygiene needs from the back of a car many a time. And just yesterday I took my eyes off my son for a second and found him alone in a supermarket lift (he is non verbal and could have been anywhere!).
Everyday is a challenge. Everyday I am making decisions based on today’s needs and tomorrow’s future. I live for today but am very aware of the future repercussions that my actions may have on both my children.
And I know I may get it wrong. And so will you.
Because I am human. As as a mum I have the future of two very special children in my hands. I take that very seriously.
It is ok to disagree with me. It is ok to worry about how things I do now may affect my children’s future. It’s even ok to do something different with your own children.
Just know I love my children. And I am doing what I feel is best for them. Both now and in the future. And every single day without fail I am thinking to myself ‘am I doing the right thing here’ because my children never came with a manual. None of them do. And when they have extra support needs that makes things so much more complicated.
Am I doing the right thing? Time will tell I guess.