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.

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Fighting on

It has been a week of fighting this week. The children have been fighting off colds and coughs, and as well as fighting off the same germs as them I have been fighting with the local authority and my own emotions.

We heard from the local council this week regarding which school they believe to be best placed to suits my sons needs. We already knew from dealings with them last week that we would not be receiving the school we wanted yet I still found the tears rolling down my cheeks when we opened the letter. The placement was for a school we had never expected and in fact one which had even been discussed for his twin sister as a possibility for next year! After the initial shock and anger we called the school to visit and called the council to discuss why this option had been chosen.

It would have been nice to have had more time to get over the shock but deadlines on the letter stated that we had just 14 days to decide if we were accepting or declining this placement and the letter arrived just 2 days before the schools closed for over a fortnight for Easter holidays! I always try to see the positive side to things but even I had to agree that the timing of this letter was deliberate.

Anyway, we have now duly visited the councils placement choice for MY baby and as we expected it is highly unsuitable. The classroom is upstairs and Isaac can not yet climb or descend stairs safely without one to one support. He would not be receiving one to one support in the classroom either  and would also be expected to have lunch in the dining room with almost 300 mainstream children. The school do not have an on site nurse able to check him over in the event of a fall or injury and he would be expected to access the playground with all the other mainstream children. None of these are things that Isaac would be able to cope with and so we have appealed the decision and have requested the school of our choice.

I have had to force myself to fight. I hate fighting but when you don’t have a peace about something you just have to fight for what you believe to be the right thing.

And if there is one thing I can find the strength to fight for it is my babies. If you plant seeds in the wrong environment they will not grow or flourish. And if animals are reared in the wrong location they do not learn the skills needed to survive. How much more with children? In order to learn my children need to feel safe, loved, secure and happy. And as a parent it is my responsibility to ensure they have the right learning environment to grow and thrive.

I have even thought of home schooling. But I know as much as I love my son with all my heart and strength I do not possess the necessary skills to break through his autism and severe learning difficulties. I have been trying for the last 4 and a half years. It has taken years just to get fleeting eye contact. I spent years trying to get him to learn colours and shapes and numbers and enjoy the challenge of a simple shape sorter. He still thinks brute force will help get the circle into the square hole! And he still chews everything in sight. And we still have no language. He is still in nappies. And dressing him is still a huge fight.

In fact so many things have become a fight. The fight to get him to eat healthy and not just live off chocolate. A fight to change every nappy. A fight to get him to sleep at night. A fight to keep him asleep. And sadly a fight to get his needs met by professionals.

I’m weary of fighting this week. Weary of the battles daily.

But he is my baby. My longed for child. My reason for carrying on. I look in his face and know the fight is worthwhile. Because he is worthwhile.

And so I’m fighting on.