The painfully slow process of getting SN help

17 Sep

Not posted a blog for a long time.
 Don’t know who will read it as I think one needs to post regularly to get followers.
 I’ve moved since I last posted a blog. That took most of my time.

 I need to come back & have a place to let out all my feelings about my son & his special needs.

 He is autistic & has global developmental delay.
 He is 4 & has just started full time school.
 His extra needs 1st came to light when a health visitor did his 3 year check in May 2012.
 He was referred to speech therapy. He has had 3 speech therapy appointments since then.
 When he started nursery, I saw he was not like his peers. I spoke to the Senco at his nursery in February this year. We agreed that he needed a referral to a paediatrician to discuss my worries.
 I saw a consultant in April this year.
 He saw Olly for about an hour & a half. Then we were to have more appointments. Another one in 6 months with him. So that should be October this year. It is in December.
 Olly also needs a Multi Disciplinary Assessment. Olly will go in front of a panel of people who will say for certain that he is autistic. This appointment is very important. He is currently 36th on the list for an appointment & apparently he may be seen by Christmas. Except they only do 1 appointment a week where I am. So him being seen by Christmas is overly optimistic. 

Today I have started the process to get a statement of needs for Olly so he gets extra help at school. He is “ok” in reception class but he will really need the extra help by year 1. We need to start the process now, in order that his extra help will be available by the time he starts year 1.

I am grateful for all the help that is available. But getting the help is utterly exhausting.

 Thanks for reading & any feedback regarding what I’ve written or blogging would be lovely.

This morning

22 May

It was photo day in nursery today.

A few months ago I bought some t shirts for Olly. They have animals on the front. He loves animals.
He also hates new clothes, clothes he is not familiar with.
I put out the 3 t shirts & asked him to choose one from the lion, giraffe or elephant. 
He refused to look at them. So I selected one. And attempted to put it on him.
And he had a huge melt down. “No top, no top” he yelled.
 
I went & got a top he was familiar with.
 
He is growing out of many of his tops, so I am going to have to leave his new tops hanging around so he can get used to them.
 
Then I needed to comb his wild hair. After 6 laps of the downstairs, I had managed to get the comb through one section. This was a success!
 
We get to nursery.
 
As the photographer is there, the set up is a bit different.
 
He wants to go & sit in his normal place where he changes from his outdoor shoes. He can’t, so I stop him or he will ruin someone’s photo! So he plonks himself down where he is. In the way. I manage to quickly change his shoes.
 
He is supposed to go into the other room. He Will Not. “No no no” he yells.
 
So I pick him up & remove him & take him to the other room.
 
All this & it was only 0915! 
 Image

Skint

21 May

 

 
Channel 4 is showing a 3 part series about a housing estate called Westcliff in Scunthorpe. 
The intention of the programme is to show what life is like during the recession when people are hard up.
 
What the programme actually does is show an estate in the worst light that it can. 
 
Journalists working for the Daily Mail must have been cheering from the roof tops as this programme will keep them in sensational, single mums & people on benefits are scum columns for weeks. 
 
We have Dean. Father of 7. Him & his partner are reliant on benefits. The programme makers have glossed over the fact that Dean worked at the local steal works for 23 years until it closed down.
 
Hayley has 5 children by 3 fathers & is also reliant on the benefits system. We saw her getting married to her partner. She is 21. In 5 years her youngest will go to school & Hayley, who came across as an articulate young lady, will be able to train & go out & get a job. Lets say she’s back out at work by 28, she could do at least 40 years working. 
 
We were also shown how utterly beholden to the benefits system she was. Tax credits decided they hadn’t been informed that her partner was living with her, so immediately stopped the benefit while a joint application was being made. Hayley had £5 left & twin babies to provide milk for as well as feeding her other 3 children. She ended up at a food bank. Hayley also pointed out that if she let her babies go hungry & without nappies, the authorities wouldn’t be happy. And yet she was left with no money to provide these essentials.
 
Whatever you think of the benefits system, it should not treat its clients with such disdain. They are playing with real people’s lives & generally speaking, lack of money has a great impact on the children.
 
Quite heartbreaking was a young girl called Jamilia. She was 16 years old. She had clearly been let down since the day she was born. There were no parents around or any other responsible adults. She had a baby at 15 who was taken away from her after the birth. Jamilia was quite open about the fact that her life right now was too chaotic to have her baby live with her. She was living in shared accommodation with amongst others, a heroin addict. She was an angry girl & to be honest, it’s hardly surprising. She’s had a hideous life so far & no prospects for her future. She made herself up to go to court, in the hope that if she looked good, her baby could stay in foster care till she was settled & not go for adoption. The baby was put up for adoption. At the end of last nights programme, Jamilia is seen in her own flat. I am torn between thinking her baby has been taken from her permanently, before she had a chance to settle down & thinking that hopefully the cycle of poverty & neglect had stopped for now. 
 
The rich programme makers have found themselves some people who may be desperate for a bit of fame. Or just something to liven up the daily grind of poverty. It has managed to show benefits claimants in the worst light possible. 
 
I am waiting for a programme that shows tax avoiders in the worst light possible as well.
 
 
 

The daily battle.

20 May

The daily battle..

The daily battle.

20 May

When you have a child with autism each day can be a battle.

From getting out of bed the right way…his way. To how he wants his cereal today or the toast cut. Often these things are done wrong & this results in a melt down. The next day I will try & do the same thing to avoid a melt down. 
 
The point of today’s blog is not only do I have to battle with my son, but also the health professionals.
 
I have had a letter through referring Olly for his blood tests. Letter says for him to go to paediatrics. Call hospital. Get put through to paediatrics. They won’t do his blood tests as he’s over 4. He was 4 last month.
 
Call normal blood test department. They won’t deal with him as he’s a child & also due to his autism & global delay.
 
Call hospital reception again. Lady was lovely. She couldn’t believe the trouble I was having. She decided to put me through to the children’s ward & explain my situation to them.
 
So, this Thursday, Olly is going to the children’s ward of our local hospital to get his bloods done. We have a 10:30 appointment but may have to wait if there are emergencies. This is not a problem. I will take snacks & books for Olly.
 
I am amazed that it was so hard to book a requested blood test. 
 
This is how it is. A daily battle.
 
I wouldn’t have it any other way. I will fight all the way for my boy.

 

Dieting. Or healthy eating.

16 May

I’ve recently made the decision to lose some weight. Again.

 
This time I am not on a diet. If I am on a diet, I have to ban certain things. You know, chocolate, cake, biscuits…all the lovely things.
 
This time I am healthy eating.
 
I am doing this through Slimming World*.
 
I am into my 3rd week and so far so good.
 
I have lost 4.5lbs.
 
I need the motivation of going to class. I have paid for 12 weeks upfront to keep me going.
 
On the Slimming World* healthy eating plan, nothing is banned. In fact you are encouraged to eat.
 
Most meat is free to eat. Including bacon! (Fat removed!) Fish is free to eat. Fruit, salad & vegetables are free to eat. Pasta, potatoes & rice are free to eat. Also eggs, legumes  & quorn are free to eat.
 
You must have some dairy & other carbs each day through Healthy choices. 
 
Other foods have a Syn value. Members are encouraged to eat some Syns (up to 15) every day. Some members use theirs for wine! 
 
There is also the option of flexible Syns. So if you have a night out planned, you don’t have to eat lettuce all night. You set yourself an amount of Syns & stop once you hit that. The next day, you return to the healthy eating plan as normal.
 
An example of what I eat:
Breakfast: bacon, eggs & mushrooms. Grapefruit. Banana.
 
Lunch: salmon, salad, new potatoes, very low fat mayo
 
Dinner: spaghetti bolognaise topped with cheese. 
 
Snacks could be some muesli mixed with yogurt or some fruit. 
 
And some chocolate! 
 
Next week, I hope to join a gym & start doing exercise to tone up as I go along. I hope to lose another 2 stone.
 
I will keep you updated on my progress!
 
*Other healthy eating plans are available! 

 

My youngest son

15 May

My youngest son has recently seen a specialist & has been diagnosed on the autistic spectrum & with global delay.

I first began to think Olly might a little different to other children of his age, just before he turned 3. I attended a parent & toddler group and began to notice that Olly didn’t interact with the other children. Nor did he talk as much as children his age and younger. 
 
To be honest, I ignored it. I thought he was a bit behind and he would catch up.
 
Last May,  he saw a health visitor who referred him to a speech therapist. A whole year later, he has seen the speech therapist twice & has been signed off for nursery to help him. To say I am not happy with this outcome is an understatement.  
 
Olly began pre school in September 2012. They are a fabulous set of “aunties” there. They genuinely care about all of their children. They have been brilliant with Olly. His Senco, Auntie Wendy has been a rock for me & I couldn’t have got as far with him as I have.
 
I spoke to her regarding his behaviour earlier this year. I said I suspected he was on the autistic spectrum. She refused to label him but said I ought to see my gp & get Olly referred to a specialist for a diagnosis.
 
We saw a doctor at the beginning of April and at that appointment he said he suspected Olly was on the autistic spectrum. We had a letter back saying he is on the autistic spectrum & has global delay. The global delay is his social side. He doesn’t interact much & doesn’t converse. 
 
So now I am on the roller coaster of getting further help & waiting for various appointments. Everything seems to take so long & some things (like speech therapy) are a bit of a fight.
 
I am in the process of trying to speed up his appointment with the educational psychologist as he starts school in September. I am going to meet up with a local support group on Friday. And I am going to get back onto the speech therapy department for some more help for Olly.
 
Basically, I will be fighting all the way for my son to ensure he gets all the help he requires. 
 
Oh & as I finished typing this, the educational psychologist called & we have an appointment on June 12th. I called this morning to hurry the appointment along! Image
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