I think most parents would agree it is a tiring and endless task raising and caring for your children, however being the parent of a young adult who is disabled with various special needs, takes things to another level of fatigue. Even if I have had a reasonable night’s sleep or even time away from the office, there is always another feeling of tiredness looming over me like a black shadow, brought on by the emotional or physical strain of tending to my daughter’s needs.
Most weeks I have some form of an appointment and these in themselves are not always tiring, it is rushing through traffic to get to them on time only to find the clinic is running an hour late, sitting in waiting rooms and trying to occupy my daughter, this is the tiring part. I agree we all have to attend appointments at some stage of our life, whether it be for a medical condition and on-going treatment or routine check-ups, but when it is weekly and they have to be followed up with therapy, the emotional toll can be immense. The emotional peaks and troughs seem so much more extreme and this in its self can be very exhausting.
It took me a long time to come to terms with my daughter’s disabilities, I suppose I can honestly say I have had pangs of jealousy in the past when I see another children of the same age being able to accomplish something that I knew would take years for my daughter to achieve. I suppose you could say I have mourned in side for the child I never had and the things my daughter has still not been able to achieve.
You may well think ‘well at least you have a child’ or ‘but special needs kids are so loving’ both of which you are correct and you may well think it is petty to feel like this, but it doesn’t diminish the amount of pride I have for what my daughter has achieved, doctors didn’t think she may walk at all but after 4 years she managed it, albeit a bit wobbly! On the flip side she is 18 and still can’t ride a bike!
It is a very lonely life being the parent of a special needs child. It is all too easy to feel like the outsider when you don’t have much to contribute to a conversation, like how well your child is doing at dancing or swimming. The party invitations don’t appear in the school bag on a weekly basis, now some of you may think that’s a blessing, I can count on one hand the number of children’s parties we have been invited to during my daughters whole school life.
Sometimes for my sanity it has been a help being able to connect with other special needs parents as we all have something in common either therapy, behaviour difficulties, toileting issues and the list could go on. I do wonder most days, is this what the rest of my life is about and despite me knowing my daughters unique thought process and the associated challenges, with the honour of caring for her comes the solitude of the role.
I used to be scared all of the time about how people would view my daughter because she was ‘different’ and any comments that may be made. However with age and experience this worry has eased and I now feel it is becoming more acceptable within our communities to not be part of this ‘normal’ culture. My daughter doesn’t see herself as being different to the next person, she accepts everyone on face value, not on the basis of their achievements or how they wear their hair or what clothes they buy.
I do remain scared about her welfare should anything happen to us, how will she manage physically, emotionally, who will help her on a daily basis. As she is now 18 your worries as a special needs parent don’t subside, it is just the next chapter in her life and this brings different worries, is she likely to get married, live an independent life and even get a job.
There are days and weeks when I can be very quiet especially when times are hard, it is not always so easy to see the good things as health and development issues take president. I may be quiet in the office, not take part in conversations and sometimes seems withdrawn, but it doesn’t mean I don’t want to share our life with others.
Talking can be difficult when you are special needs parent as you always seem to be spoken to by others and without having common ground to speak about, sometimes it is easier to not say anything.
However, I have learnt that it is ok not to talk sometimes, as we need time to digest information, be able to see a way forward and have time for ourselves. Talking though can be a great healer and I have managed to come to terms with my daughters disabilities, because of our great freedom of speech, without this I am sure my life would be very different.
I am human
Yes I can be grumpy, fed up, quiet seem ‘off colour’ and not always life & soul of the party and yes life as special needs parents irritates me at times, but would I change my life, not at all.
Sometimes it’s nice to escape with friends and talk about other things or just lie on a beach hearing nothing but the waves lapping at the shore don’t get me wrong, I still have my own dreams and aspirations but if being the parent of an adult with disabilities is what the rest of my life is about, I’ll take it.
My daughter has been the most inspiring thing that has happened to me and some days I can’t believe how lucky I am to have her. She’s loving, tactile, funny and beautiful and what she has accomplished in her short life is down to her sheer determination and she has proven that having a disability, doesn’t have to hold you down.
For our next holiday, I will be purchasing a policy with Free Spirit travel insurance to ensure all of my daughters disability medical conditions are covered, just for that extra peace of mind.