Nice to be just a mother

 It would be nice to be just a mother....

In a comment on my last blog, somebody commented: it would be nice to be just a mother. Somebody else wrote: I love my daughter so much, but I hate being her carer. This is what a lot of people don't understand. as a parent of a child/adult with a disability, your whole world changes. 

Some of us get told straight after birth, some even before birth, that the child they were looking forward to, is a different child than what they expected. Others gets a diagnosis after months and years of searches and visits to doctors, psychologists and other specialists. Others never get a diagnosis or an explanation, it is 'just one of these things', 'something went wrong', or 'we really don't know'. 

But what happens to them all is a dawning appreciation that their life, and that of their families, have changed forever.

Everybody that has a new baby recognise the feelings of awe and pride and joy and yes: sheer horror of being responsible for this little person. It takes time to get used to feed the baby, to wash and change nappies, to do without sleep half the night. You have neighbours calling in to congratulate you and to see the new addition to the household, and you have all the planning and anticipation for the future. 

But if your baby is born disabled everything changes and gets so much more complicated. The neighbours may still call, but they are nervous about saying 'the wrong things'. They are not sure if it proper to congratulating you the birth of a baby who's 'not right'. They will tell you things will be okay, that babies like these are sent from Heaven for 'special' parents' to look after. They will tell you that you will be rewarded in Heaven. They will tell you that 'these children' are so lovable and musical and will have 'special gifts'. Some will even tell you that is a special honour to be the parent of a child like this.

I am sorry to tell you, this is all rubbish! Things go wrong, and something has gone wrong with your baby. You are now going to have to come to terms with a life totally unknown to you. Instead of wondering about breastfeeding, and for how long, you are now going to be introduced to peg feeding and special food supplements. Clothing...where do you get clothing making allowances for special equipment and braces? You will learn how to keep a 'peg' clean and how to provide your baby with the right medication at the right time.  

Nappies, you expected them to be part of your baby's life for 2 or 3 years, now you will be changing nappies well into the baby's adulthood and beyond. When your baby outgrows the baby nappies in the supermarket, you will join other parents discussing the merits in the various kinds of incontinence wear the HSE provides...assuming that you have managed to convince you liaison nurse that you need them.  (most of us call them adult nappies, which is what they are!)

You will discover a long list of disabilities and the prejudices that goes with them. Down syndrome: oh, they are all such lovable good humoured children. Autism: 'oh they have superpowers'. But for most disabilities you will learn that people know nothing about them. Angelman syndrome, Cri-du-Chat, CP (cerebral palsy), hydrocephalus, fragile-x, Praeder-Willi syndrome, the list go on and on.  you will learn about them through interaction with other parents of children with disabilities, because as time goes on, your social circle will contract and contract, and after a few years most of the people you know, will be other parents in the same situation as you!  

Over the years you will come to terms with words like Domicillary Care Allowance , Carers Allowance, Carers Support grants, mobility grant, primary medical cert. you will learn all about the requirement for each, and if you get one of these, you will become accustomed to the state writing to ask you have the baby with a lifelong condition suddenly been cured ?  You will learn about Early Intervention teams, about  physiotherapists and occupational therapists, speech therapists and social workers, psychologists and liaison nurses and SNAs. They are all considered vital in providing services for you new baby, just don't expect to see them any time soon! They are in severe shortness in this country, and a lot of (most?) parents pay to engage these on a private basis. 

As your baby gets older, your thoughts turn to schooling. All children are entitled to an education, so at least that wont be a problem...WRONG! If your local school maintains it does not have the capacity to provide a place for your child, they are not obliged to provide a place.  And if your child has 'special needs' expect him/her to be shipped across the countryside to access a special school or a special class. There is no obligation on the school to cater for pupils with a disability, and there doesn't seem to be any obligation for the State to provide any assistance needed for your child to attend the local school. 

According to the Disability Act 2005 all children with a disability are entitled to an assessment of need. According to the law this should take place within 6 months, but it usually takes a lot longer than that.   You as a parent can apply for it, but this is the real kicker! Just because the assessment says your child needs something, doesn't mean that it will be provided. The whole Disability Act is predicated on the State 'have the resources' to provide those services. This is such a staggering thought that I find it difficult to understand the thoughts behind it! I may very well (Certainly!) come back to it in a later blog.

As time goes on you will discover that you are expected to take on several new 'jobs'. You go to see a physiotherapist and you are shown exercises to do at home. The speech therapist will show you exercises to do to encourage the development of language (up to now you thought this was something that came natural to everybody!) .You will be encouraged to advocate on behalf of your child. You will quite possibly find yourself involved in campaigns to get the services your child needs. You are encourage to make sure you child gets an appropriate diet, especially if feeding is a problem. You are required to ferry your child to appointments and hospitals as needed. You will need to become an expert in applications for grants and allowances. You will not get paid for this, nor will you be given any training for it, only what is provided at your child's therapy appointments. 

After a few years you will look back and wonder what happened to your former life.  You will wonder what happened to the person you used to be, before you became a full-time carer.

So yes, it would be nice to be just a mother or father......