Tuesday, March 20, 2007


If Pink is the New Blog and Size Zero is the New Thin(not!) then for Beauty 5am is the new Wake-Up time!
Many autistic children seem to suffer from irregular sleep patterns, difficulty getting to sleep, difficulty staying asleep etc. Our problem was 12 midnight or later bedtimes, wakeful nights and early rising. BUT........in the last few months Beauty has managed to go to bed at 9pm and stay there, not wake so often at night and stay in bed until 7-8am. However, that seems to have changed recently and we are back to early wake-up calls. I am hoping that this is a result of her being ill so much this winter and now that she seems to be getting better then the sleep schedule may sort itself out. If not, then Sporticus gets it because at 5am when your body is awake but not your mind, Sporticus (ex-aerobics world champion)jumping around in what seems to be your kitchen(even if it is on the computer) is not my idea of a leisurely wake-up call!

Family's concerns over 'abuse'
Suffering a severe form of autism means the welfare of James, 39, is always a concern for his family.They say his condition makes him particularly suggestible and easy prey for others.But the normal worries of his sister Linda were heightened a year and a half ago when she began to suspect somebody was stealing from James, who was living in sheltered accommodation with no support from staff overnight.He told his sister another resident was taking items from his bedroom and entering without his permission and had taken money from his trousers while he was still wearing them.His family believe an estimated £2,000 was stolen over time but worse was to come.Linda was shocked when James's behaviour in the shower one day seemed to indicate he had suffered sexual abuse and even rape.

On the 2nd November 1982 Channel 4 started and I watched the film Walter starring Ian McKellen and I was really shocked at the treatment that Walter, a learning disabled man received when his mother died and he went to live in a hospital for people with learning disabilities. I can look back and honestly say that I did not believe that this film or the possibility of disability had anything to do with my life. I had a 7 month old baby, Anastasia, who I believed was perfect and would not have any problems. Beauty was 9 months old when we first suspected autism so that blows my past youthful confidence out of the water!
And I had thought that things had changed.
However , the above news report has frightened me, and as an older parent of a child with a learning disability it does not fill me with confidence in the system to care for my child.

"He started crying and I'd never seen him crying. He said this other person keeps hurting me," she told BBC File On 4.
"It was very distressing."
Another sister witnessed the same behaviour and the family's fears increased when his daily care worker said that James told her another resident had been in the shower with him.
The care worker told the family and her bosses about the concerns.
His family are still seething at the "professionals meeting" called by Halton Borough Council which they say was riddled with inaccuracies.
"We thought it was disgusting, they didn't even get his name correct...it said their was no evidence of a change in his relationships but staff remarked how unresponsive he was and had not been out of his room for days," said Linda.
An independent council report said the notes of the meeting were very poor.It criticised the fact that neither the police nor several health professionals were present at what should have been a multi-agency meeting.
The care worker who knew him best was not invited to attend.The council director of social services told the family that after a police investigation the Crown Prosecution Service (CPS) found there was insufficient evidence to take the case further.
Yet when contacted the CPS said no such case had been referred to it.
The independent report "largely upheld" the family's complaints but Linda said the council's response has been inadequate.
"There was no personal apology to James and no recognition of the hurt caused by failing to take proper steps to protect him," she said.
Halton Council said it is working with its legal advisers and the family to "resolve this matter as soon as possible."
The council added: "At this stage it would be inappropriate to comment any further."
Hear the full story on Radio 4: File on 4 Tuesday, 20 March, 2007 at 2000 GMT.

How do I prepare for my child's future?


When Social Care (and special needs education) appears to be finance led what hope is there for our children................who in many ways will always be children!

Thankfully Anastasia has always said that she would care for Beauty when the time came but it still worries me that Anastasia was also an adult when Beauty was born and so who will care for Beauty in that possible future?
It is way too early for such negative thoughts so I shall revert to type and discuss something less critical and more mind numbing .............my TV viewing from last night(remember DOES TELEVISION CAUSE AUTISM?)

I think I should change my name from Mother Of Many to Mother Of Not So Many after watching Ten Kids and Counting that was on TV last night at 9pm.

OnThrong-UK TV's Watching Community someone comments

While I am an avid supporter of diversity, and all these family have a right to have as many children as they like, so long as they are supporting them and not relying on the state for their sole income (sorry to the family from Kent but I really do not believe that the nation should pay for your choices, you have the children and you support them), I am shocked to think that the Wilson family go through 500 bags of crisps a week. I really hope this is a typo as this would equate to 33 bags per person (13 kids plus 2 parents) per week. This is horrific and inexcusable regardless of how many children you have.

Well for once I am not really sure what to say, for my girls that must be a bit of a surprise!
I was on my own when Fiona was about 1 years old and from them until now I have managed to gain a degree in Welsh& History, become a Registered General Nurse, gained a certificate in teaching English as a Foreign Language and trained as a teacher/lecturer. I have also learned some Spanish, British Sign Language, gained an A grade in Art GCSE(probably the achievement I am proudest of), learned to drive and taken desktop publishing, photo shop and website design classes and currently studying for a Masters degree in Special Needs Education. And work full-time as a nurse.
The reason I am telling you this is not to boast(well maybe a little- hey I am normal!) but to show that whilst having children and being part of a family is a wonderful thing, there is more to life. Some of the mothers on their show expressed how that they liked the feeling of being needed by the younger ones and they lost that feeling when the children went to school and started to grow up and so went on to have more babies.
The Catholic family, parents Greg and Aggie , felt it was important to show that just because you come from a large family doesn't mean you have to lose out on anything and I think that they portrayed that very well. Apart from the Kelly the 25 year old who has 6 children with her partner and he has 7 children from his previous marriage, the mothers all seemed to be in my age group. It would be nice to see the women exploring ways to expand their lives as they all seem to have come to a natural turning point in their lives. I hope that now as all these mothers have older children who should be helping(not that I'm an expert on that!) , these women can enjoy their children and their personal lives more.

Hi Belle, did you get Beau's card and present? Let me know.

1 comment:

Melissa said...

5am *is* the new wake up time! My daughter was up several times last night but 5am and she was up for good. *yawn*




An Irish Blessing

(A Blessing from St. Patrick)
May the road rise to meet you,

May the wind be always at your back,

May the sun shine warm upon your face,

May the rains fall soft upon your fields,

And, until we meet again,

May God hold you in the hollow of His hand.