Pass it along…and leave it to mum

imageWhat qualifications did I need to become a mum? Very little, if any.

Teachers study for years, as do speech therapists, occupational therapists, physiotherapists, social workers and psychologists.

I am just a mum. I don’t mean that in any way to put down what I do. But my role is very different to the specialists named above. My job is to love, nurture, support, encourage and guide my children to become the best that they can be in life.

For my children with additional support needs that means I will be changing nappies much longer than average, still teaching basic sounds and numbers long after others, and spending that bit longer supporting my children (possibly way into adulthood). That I can, and am happy, to do. I will happily spend my evenings singing nursery rhymes, playing board games and doing homework. I have no issue with cooking, cleaning, washing and other seemingly mundane house hold chores.That is what being a parent entails.

But increasingly I feel I am being asked to be way more than a parent to my children.

As financial pressures increase upon the services my children depend upon to support them, there is a current trend of ‘pass it along’. Basically for so many professionals their time with my child is very restricted. Their roles are goal oriented where after a few sessions it is expected they can record progress and show they are making a difference. Then they show me how to do what they have started and move on.

So for example, the speech therapist may visit and introduce some basic visuals. He or she may check my son or daughter appears to understand, then proceed to give me a quick demonstration and hey presto…they vanish off the scene leaving me to do their job! They have little choice really. They have referrals coming out their ears and fewer resources at their disposal. So ‘pass it along and leave it to mum’ is the only way for them to survive.

So now I am a parent and suddenly a speech therapist too. That adds a bit of pressure.

My daughter was finally seen by a physiotherapist this week. She was lovely and very thorough. We now have a much clearer understanding of some of my daughter’s physical difficulties. More referrals will now be made (the hospitals must think we have a season ticket!). When I asked specifically where we go from here I was told that hopefully someone can show the school some exercises and we will also be sent leaflets full of things to do at home too. No time to come and teach me. It is expected I will be able to work it out myself, without all their years of specialist training. No time, no resources, not enough staff. Pass it on; discharge.

So now I am a parent, a speech therapist and now a physiotherapist too? I can sense the washing pile mounting up more and more!

The occupational therapist came this week too. Her case load is more than some schools have on their entire role! There was insufficient time (as usual) to complete the paperwork she wanted to do that day so a pile was left for me to complete as soon as possible. And of course she left us with more practical ideas to support the children. No time to teach but ‘the sheets will explain’…where have I heard that before?

Now I am a parent, a speech therapist, a physiotherapist, and an occupational therapist!

Do I really need to tell you what sort of thing the psychologist meeting was about? I think you get the picture!

Of course I could easily chose just to default and be ‘simply’ mum. But the reason my children were referred and accepted by all these professionals is because there was a need for their services. Their input could apparently ‘add value’ to my children’s lives. They could apparently help us.

So while I am left with not only the raw emotions of finding out my child has yet more physical issues and needs, and passed to yet more health professionals and departments, I am also forced to take on roles I am neither qualified or trained to do.

And when it all unravels and my child still can’t talk or use visuals in years to come, or my daughter is still unable to carry out certain physical tasks or is still crippled by anxiety who will accept responsibility?

They will say the have done their best. They did exactly what the system expected them to do. They passed it along…and left it with mum.

Meanwhile poor mum has little time left just to be a mum. She is far too busy trying to be the professional needed for her children.

It’s just she has no-one left to pass it all along to.

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Forced onto my knees to beg for support

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I try to stay positive. I try my best to work within the system and I am very grateful for each and every professional involved with my children. But right now I am forced onto my knees to beg just for basic support and it is disgusting.

Here are some examples:

My six year old child is non verbal. He has complex medical and developmental needs. He has a diagnosis of classic autism, neurofibromatosis type 1, global developmental delay, severe learning disability, vision impairment and pica. He attends a specialist school miles away from our home. Yet despite the fact he can not jump, balance on one leg, speak a single word, dress himself, is not toilet trained and his understanding is very limited, he is not able to receive any physiotherapy or speech therapy! You see apparently they would not ‘add value’ to what he already receives, which in fact is only one sole autism occupational therapist who currently sees us at home once every three months! So school are left to do what they can and we are left with a very frustrated, self harming, agitated child with no means of communication and a high level of care needs.

It isn’t that I haven’t tried fighting the system for him either. I fought to get him diagnosed from when he was less than a year old. No I didn’t want my perfect baby boy labelled with a life long neurological condition but I knew early on that despite policies stating support would be based upon ‘need’ rather than ‘diagnosis’ it is very hard to get the ‘need’ recognised without an actual name. And ‘autism’ is way easier to write than ‘difficulty communication, socially unaware and unresponsive and engaging in repetitive activity including flapping, rocking and self stimulating activities. In addition it appears my son is not meeting milestones expected of his age including sitting, walking, speaking and self care skills.’ Writing the latter on so many forms was giving me writers cramp!

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So we got the diagnosis. We fought and got him his school. And now one by one the system is just dropping him like a hot potato. It seems my child is too costly. He can not enable professionals to tick boxes quickly enough, he is too time consuming. Instead they sent parents on training courses (at the parents expense), pay them £61 a week ‘carers allowance’ and leave them to get on with it. They won’t even provide my child with a wheelchair to enable me to take him out safely. Almost three and a half years ago they supplied him with a disability buggy and now this is no longer suitable no-one seems to care. Numerous referrals to wheelchair services later and once again we are still getting nowhere.

But we don’t just have one child. Our second child also has autism and she too is being failed by the same system. A recent visit to our paediatrician confirmed verbally that she is likely to have hyper mobility syndrome. This would certainly explain her joint pain she keeps telling us about, her exhaustion and her ‘interesting’ ways to sit and feel comfortable. It could also help understand her physical delay and inability to meet physical milestones.

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It is one thing to hear your child is struggling. It is another altogether to try and secure help for them. I asked for my daughter to be referred to physiotherapy 13 months ago. Three referrals later and we are STILL waiting to receive word from them. She is forced to use her brother’s disability buggy when we are out due to pain and exhaustion (while we struggle to deal with her brother and his needs without adequate equipment) since wheelchair services are not accepting a referral for her. She is also being let down by speech and language too and is left to struggle in mainstream without so much as a visual timetable. I could have cried witnessing her standing in the middle of her class with her coat and outdoor shoes on as she tried to process the steps required to her daily morning routine. What other children did without thinking required so much more processing for her, yet no-one seems to want to help or support.

Would you believe both my children have all the necessary legal support plans in place? They have fully recognised needs and they have been in the ‘system’ for many years. They also have parents who continually email, phone, self refer and devise strategies of their own to help them. We get the grand total of three hours respite a fortnight. We get very little sleep.

I feel so let down just now. I am watching my children suffer through lack of funds and a system looking for quick fixes. I am a grown woman. I am a strong parent.

But right now I am forced onto my knees to beg for support.

And that breaks my heart.