The effect on me…

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Having children affects everyone. You become less focussed on yourself and more focussed on another. You sleep less, go out a lot less and consider it a great achievement to get a shower without interruption. But as time passes the children slowly become more independent and confident and you little by little gain more of yourself back again.

Well that is how it works when you have typical developing children anyway. But what if that very needy, all-consuming, up through the night, needing a huge amount of time stage never ends?

It is well documented that parents of very young children are vulnerable and prone to depression, mental illness, and can easily become socially isolated. Health professionals are trained to look out for this and regularly check for signs that all is not well as research has shown that sleep deprivation and coping with the high demands of a baby or young child take a huge toll on parents.

But it is expected that season will pass as the child grows.

But for some, like myself, that season just keeps going on. And not because I went on to have another child either. It is because almost seven years after having my babies I still face the high demands, the daily intimate care needs, the lack of sleep and the stress of milestones not being met. My children have disabilities and the pressure parents of very young babies face is still very much the same as what I face daily. I still change nappies, I wash my children and dress them, I am still singing nursery rhymes and trying to teach one to say ‘mama’ or ‘dada’, I am still cutting food up and putting socks on that have been pulled off.

And that long-term intensity has to have an effect on me.image

It takes it’s toll mentally in that some days I could just sit and cry. The doctor could give me tablets but the pain and stress would still be there. Some days the effort to get dressed and get out the house just seems too much. Except unlike parents of babies who don’t have to leave the house and can go back to bed, my children have school to get to even if one of them still only functions at the level of a 1-year-old.

It takes it’s toll socially in that going out at night is impossible. Besides the fact I have huge caring responsibilities and am permanently exhausted, baby sitters are a rarity for families like mine. Who has the physical ability to carry a large six-year-old out of a bath and dry him and dress him? Who has the emotional strength to deal with a little one having a panic attack because her mum has left the house? Even if I did find that special someone I have no motivation to get dressed up and make myself presentable when my body just craves sleep.

It takes it’s toll physically. The lifting and carrying of a baby can make a mum’s arms ache but when the ‘baby’ is two thirds of your height and a quarter of your weight how do you manage? Seeing to personal needs of a toddler who decides to crawl away is a challenge. Seeing to the personal needs of a child who can bite, punch, kick and climb is an altogether harder challenge. When they are long past the age of using a baby change in public and you have to find a way to meet those needs in public toilets not build for that purpose your body aches and bends in ways you never thought possible.

It takes it’s toll financially. Babies cost. I often hear parents complaining at the cost of essential items like prams, car seats, cots and nappies. Second hand is sometimes an option though. But not when you enter the ‘special needs’ market and you have to look for elastic waisted soft trousers for a child who can not dress himself yet aged 6. Or you have to think about paying for private therapies not available on the NHS. Then there is the cost of hospital trips, the fact the schools are miles away from home and special needs sensory toys come at a huge cost. And I still have to buy wipes, and bedding and nappies and other ‘baby’ items six years on.

It just all takes it’s toll on me.

The days of people ‘popping by’ to see if I am ok has long passed. The excitement of coming to see those new babies has long gone. The phone calls from friends to hear how the babies are stopped many years ago. Yet the reality of my life never changed much.

Yes, my children have changed me for the better, but full-time caring for a disabled child takes it’s toll.

Please, if you know someone who has a child with any sort of disability, think about and do what you can to help the child. But have a think what you could do to help mum or dad too. Believe me they need support more than you may ever realise.

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My kid cried…let’s call a meeting

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Something about the ‘stay at home mum’ got lost on me this week. I was hardly home at all. One meeting was followed by another meeting, followed by phone calls and emails.
I am so grateful for having people involved in my children’s lives. I appreciate the work my children’s schools do and the professional involvement that they both have. But it is a stark reality that having two children with additional needs with two separate teams of professionals and two different school to deal with often means a whole load of meetings.
Add to that medical issues and everyday appointments like dentists, opticians etc and I once again realise why I am often more of a carer than a parent.

The reality is that meetings are necessary. I can not raise these children alone. I have had to ask for help. We have speech therapists, educational psychologists, social workers, occupational therapists, doctors, paediatricians, nurses, support staff, teachers, head teachers and carers all involved with the children. And they all need to know when things change.

Then there is church too. After almost six years attending crèche the tiimageme has come to discuss how we go about transitioning the twins into Sunday school in church. While other families just take their child to a different room one week, perhaps stay for a short time and then leave them, it isn’t that simple for me. So I had to have a meeting. The children need social stories, photographs of staff, visual timetables and lots of discussions about to manage behaviour, communication and anxiety.

Now school has returned and there are new teachers to work with, new support staff and medical issues to sort there has had to be meetings with both schools. I have had discussions with teachers, head teachers, support staff, seen where one of the children will be changed and sorted through lots of minor issues and misunderstandings. The transitions to new classes and starting school has been hard on the children. It has involved panic attacks, self harming, screaming, and a whole lot of tears. Only one of the children has the ability to tell me what has been going on. We needed meetings and phone calls to help sort out a whole page of difficulties for one child and meetings to sort out ‘unknown’ difficulties with the other child. School has brought with it such an intensity at times and family life has been very hard. While that is often just something families need to go through and you know it will sort itself out, when your child has a disability you have a duty to keep professionals informed in order for them to best help and support. No parent can have their child self harm or have daily panic attacks and just ignore it.

We had some teething trouble with transport. Lots of phone calls later and that seems to be more stable. We have had challenges with homework in a house where both children require 1-1 at all times. The balancing of needs is turbulent at the best of times but add homework into the mix and the storm hits with full force, from both children. So this needed discussed with school too.

Care plans needed updated, medical issues have needed addressed and sensory needs monitored. And it all involves lots of discussions and meetings.

At times it really has felt like the second one of the children cried we would be having yet another meeting.

Sometimes it would be nice to just get on with family life. It would be lovely to have privacy and not have to keep discussing daily how we will deal with today’s struggles and tomorrow’s worries. It would be wonderful to not have to read school diaries and feel the weight of concern when you read ‘they had a bad day today’.

But I have to accept that if my children have support then in turn I lose something of myself. I lose my time, my privacy and some of the confidentiality of family life. My children lose a lot of that too. In order to help there has to be meetings. People have to know when my children are in pain, highly anxious or upset. We do need to share sensitive information with others like when they have had bowel movements or what they have eaten. It has to be recorded for their health and well being. Sometimes that just upsets me. It can feel like an infringement of privacy at times but sadly for everyone these things need to be shared.

But can I tell you that today my kid cried. And I just dealt with it. No-one else will know why and there will be no meeting. Because in all these discussions my family still needs respect and privacy.

Just because my children have extra needs does not mean everyone has to know everything. Help us, don’t suffocate us.

I might just mention that in the next meeting I go to…