I have a special needs child

No doubt every parent of a child with a diagnosis struggles at some point with the "label" their child is given. I have. We have as parents. And our extended family have also - and still do - struggle to get their heads around the ASD diagnosis because for a lot of the time to the outside world Amy appears to be "normal."

As a parent I have had to recognise and accept that raising a child with ASD is not easy work. Parenting itself is full of challenges and I am not undermining that. But parenting a child with ASD comes with a whole lot of other challenges. Parents of typical children often comment that they wish there was a manual for parenting. There might not be, but there are lots of resources out there to inform, educate and advise parents of typical children.

I certainly wish there was a manual for parenting the ASD child! Autism New Zealand is the gateway to a wealth of information and resources on parenting the ASD child. I haven't tapped into much of it at this point. Mainly because I am on my own journey as a Mum in accepting that my beautiful blonde-headed and blue-eyed four year old has special needs. Special needs that no matter how much time and energy we put in will be there for life.

Obviously there are worse conditions out there than ASD. But being on the higher end of the autism spectrum comes with a whole heap of issues that we are still unravelling as parents. Now that Amy is four years old I can look back at the last four years and appreciate how much time and energy has gone into parenting her. Her "special needs" have exhausted, frustrated and stumped us many a time. Yet we have carried on, determined to give Amy the best start in life as possible in these precious preschooler years.

We have done well as parents. I hear that a lot. But I think part of parenting a special needs child is getting to a point of acceptance that outside help is both needed and necessary. We have specialist input. There are neighbours and friends who are able to watch Amy if I need to go for an appointment. We have respite care in place but it is irregular in nature and not quite filling the gap I think we need to help us care for Amy.

Time as a couple has slipped down the list as parents of an ASD child. It is not Amy's fault. I am not implying that. I am just pointing that she has been our main focus, and by the time we've factored things like work, gym-work-outs and committee meetings etc into our week, there seems to be little time for us. Try as we might to be more creative around how we spend our evenings together, it is hard to do much more than blob on the couch together.

I have clicked recently that this is our life. That life with an ASD child will continue to be filled with challenges - often daily ones and so as a couple we need to find a way to make time for us, otherwise we are in danger of there not being an "us".

Thanks to the recession, I am in the process of looking for more work. This has meant looking into appropriate care for Amy - probably in the form of a nanny. It wouldn't be more than twenty hours a week and I'm not sure we can cover it yet I am still investigating funding. Believe me this has not been an easy decision. I have prided myself in being an at-home Mum for four years, never working more than ten hours a week, and working it out so that my husband was always able to look after Amy.

I think perhaps it is best for all of us if we do get a nanny. We have some great extended family support from a distance but not the physical hands-on support some families may have with special needs children. So I suppose employing a nanny could be a way of bringing in another member of the family to help us care for Amy while we go out and earn the bacon as such.

I was the nanny of a child with Aspergers Sydrome myself many years ago so today can appreciate why I was employed. It wasn't just so there could be two working parents. It was so the parents could have a break. These are children with social difficulties so I think it is a positive thing giving them the opportunity to bond with another adult. I couldn't have considered this before this point but it all seems quite timely. Amy will be at morning Kindy soon and at school in a year, so perhaps some time bonding with another adult will help prepare her for long school days in which Mum won't be around and she will have to turn to others for support.

Reaching a place of acceptance and understanding that I am the Mum of a special needs child has been quite big for me. I don't mean to use that label as an excuse for her - or me as a parent either! I'm not implying that Amy is limited in her capabilities either. It's not about that. It's simply that she does have special needs that are beyond that of the typical child - needs that are a challenge to meet and read. As any mother of an atypical child will attest - Amy is indeed so very special in her own right and in many ways. That is the flipside - she may have a diagnosis to live with, but she is Amy to us and to all that love and know her.