Imagination

Looks just like a box doesn’t it?

But add a pillow case tied to a coat hanger and the inside of the kitchen roll and you have a boat with which to sail the seven seas.

We even had fish

I love imagination – it’s great.

The playroom.

A rapidly untidied playroom - hopefully rapidly tidied!

After two weeks away with his Dad and spending a lovely time in Wales with Nanna and Bapa J has returned home happy, healthy and lively. Oh how I have missed him - now he is back I feel complete again.

While J has been away we have had a spot of "Changing Rooms" and the spare room (full of junk and unloved) is now freshly painted and carpeted with a sofa bed, J's toys, and a rug with printed roads. J loves it - it's been done to try and give a distinct difference and feel between a room for play and a room for sleep. It's also been done to mark the fact that J is no longer a baby or small child but a big boy approaching 8 who is going into the juniors. As such it felt only right to give him a bigger boys room - he is delighted and the road rug promptly became a city with a police station and a zoo. The police station saw some use as driver after driver was stopped for speeding and thrown unceremoniously into the cells! I have made a mental note to steer J clear from a career in law enforcement for all our sakes.

Within two hours of J arriving home there were sweet wrappers in places there should not have been and sticky fingers everywhere. Oh well - getting organized in his absence was nice and housework can wait until we've finished playing.

I found the poem below several years ago and it sums me up perfectly.

I hope that my child, looking back on today

Will remember a mother who had time to play;

Because children grow up while you're not looking,

There are years ahead for cleaning and cooking.

So, quiet now cobwebs, dust go to sleep.

I'm playing with my child, and children don't keep.

 
Perfect.

The "Police State" City

Random thoughts................

A few weeks ago I was informed that an application for Disability Living Allowance for J had been successful and with this came some back pay.  With J away in Wales until next week (I am missing him sooooooo much) I have been doing a spot of "Changing Rooms" using the back pay. I am fortunate enough to have a spare room here and am hoping to create a play room for J in order to make a distinct difference in feel from a room to play and a room to sleep. At the same time I am looking at sensory lighting and relaxing colour for J's bedroom in order to make this a room to really relax and settle to sleep in. I am under no illusions that J will actually stay in bed because J is not like that but at least if the toys are out of the room it will curtail his activities somewhat. So the spare room has been painted and a carpet goes down on Wednesday after which I will offer the carpet fitters and extra £20 if they will help me get the heavy and bulky sofa bed up the stairs so that J's play room can have it's own little sofa.

We also have a new Hamster named Bramble who is tame and utterly gorgeous as you can see.

Bramble came from a lady near Colchester who is hamster mad and who breeds and homes very tame hamsters.

Drusilla my very naughty Tortie cat thinks Bramble is just delightful and spends many an evening sitting hopefully by the cage. Once the evening is over though Drusilla is unceremoniously evicted from the living room where the cage is and the door to the room is firmly shut. I am under no illusions about my cat.............




An application I made for re-housing has already been processed by Basildon Council. As they are still working on the applications for last November this is fabulous. My application has been processed because the form I completed regarding J was seen and assessed by the medical officer who has agreed we need rehousing on medical grounds and that J needs a garden. Having said that though there is a dearth of social housing and my priority banding means that it is likely I will be housed sometime in the next 7-10 years if I am lucky. However, the property we currently live in is coming down within the next five years (unless the coalition Govt decides otherwise) so we'll be re-housed then anyway. In the meantime J will have to continue being very active indoors or there is a park opposite. As J cannot be outside unsupervised this means I would have be with him - one reason why a garden with a tampoline he could go mad on would be great.

Finally and most importantly I had a phone call from the special educational needs team last week to tell me that J's case had been to their panel and that from September they will be assessing him for a Statement of Special Educational Need. I am over the moon about this as it will give J a guarenteed plan of support to help him access the curriculum in school. J's school has always been very good with their support but a Statement would ensure they receive the money needed to employ somebody specifically to be with J in school on a one to one basis. Brilliant!

So J - I am missing you and can't wait to have you home again. I know you are having fun with Daddy, Nanna and Bapa and am so glad you are enjoying yourself. I am looking forward to a cuddle with my darling boy but not looking forward to the first occasion when he loses his temper and stomps up the stairs.

Farewell Dora the Explorer

Goodbye our little furry friend

This is a beginning, not the end

Off to Hammie Heaven you go

Away from cold and rain and snow

Sunflower seeds and peanuts await

Sunshine and laughter for our very best mate

 

(with thanks to a Fab :-) Mumsnetter's son who wrote this poem about his hamster when it died)

 

RIP Dora -  a dear little hamster

J through the looking glass

From a very young age J was fascinated by his reflection in a mirror – nothing very significant in that as most children are keen to look in a mirror at themselves. However, from about the age of 3 J’s mirror gazing became slightly different and very entertaining to watch. J would stand in front of the mirror and pull a variety of facial expressions – he would even practice crying sounds while watching himself. Naturally I put all this down to his tendency to show off and perform to an audience. I even looked fondly and thought “Bless – just like his Dad” at some of the more comedic expressions and confidently predicted a love of drama.




At the age of 7 J still does this “mirror” stuff and practices a big beaming smile among other expressions. When J feels he has done something wrong or if he feels I am stressed he will gain my attention and say “look Mum” and produce the biggest most beaming-est smile possible – it lights up his whole face and includes his eyes. It is identical to the one he produces when he looks in a mirror.



Today I attended an autism workshop looking at sleep problems in school-age children on the spectrum. As part of the workshop we watched a series of short films about autistic children and the sleep issues which affect them and their families. One showed a little boy of about 9 being asked to go to bed.



“Time to go to bed Zac”



“Nooo” was the response shouted loudly by Zac all the while he walked up and down in front of a mirror pulling a variety of expressions.



“Yes – you need to put your PJ’s on”



“No – don’t want to go to bed” again said loudly but more calmly as Zac became absorbed in this mirror gazing. He pulled several expressions and watched himself closely, sometimes practicing a grimace or smile again.



For me it was a bit of a light-bulb moment and H (the speech and language specialist) said that children with Autistic Spectrum Disorder find facial expressions and the world in general very confusing. It is not unheard of for them to “practice” the expressions they see around them in front of a mirror to try and make sense of them. In this way Zac could see the facial expressions which went along with his upset feelings around going to bed.



So J has been doing this mirror practicing to some extent too and I’d had no idea that it was significant as behaviour. To be perfectly honest I just thought J was a bit of an actor – practicing his performances prior to testing them out to their fullest extent on me. I was wrong but still feel his ability to “perform” and practice these things won’t do any harm in his drama group which starts tonight.

SNAP-tastic!

After my rather melacholy post last time I promised J's Dad that this one would be much more positive... and it is.

When J was diagnosed there was a lady in attendance who is manager of the local special needs centre. Hilary set up SNAP with other parents in the 1990s when she realised how woefully inadequate the support services for parents of children with special needs were. Over the years SNAP has expanded and grown and now has it's own premises in the grounds of the old Warley Hospital.  It is well used by families all over south Essex and runs a variety of courses and groups for parents and children. One of these groups is SNAPTASTIC a "stay and play" group aimed at children 5-13. At £3.50 a session it is very affordable and once the Disability Living Allowance has been agreed (not holding my breath on that one) will be a regular activity for J.
The session is based around fun and support for both children and parents, the centre is fully open and there are plenty of activities for the children. Upstairs in the meeting room there is seating, biscuits and tea or coffee for the parents. While the parents drink tea and chat the parent advisors circulate and are ready to offer support and advice as needed. Meanwhile downstairs in the playroom an army of staff and volunteers play with the children and supervise the SNAPTASTIC session.
J has attended only one session so far as they are not weekly and immedietly made a friend. A is 7 like J and also like J is on the autistic spectrum. J and A met at the door of the session and seemingly recognised kindred spirits in each other. Once the door to the playroom was opened they were off to run, jump, dress up in the costumes and have fun. The supervisors and volunteers had a hard job just persuading them both to stop and have a drink as the sweat poured off them both. Everyone commented on the fact that they seemed to be long lost friends who had known each other all their lives! It was great to see and J did not look for me in a whole hour. While J was playing hard downstairs I was able to wander upstairs to drink coffee and talk with other parents including A's Mum. It was so helpful to do this as I recognised so many similar problems between J and some of the other children. In many ways it was a bittersweet experience, J had so much fun and that was wonderful to see, but in seeing him enjoying the session I also recognised the fact that it was with these special children that J fitted in perfectly well - a confirmation of the diagnosis if you like.
So June approaches and J has been booked in for more SNAPTASTIC sessions and also the drama group which starts in June too. I have booked myself onto a series of four workshops looking at various aspects of daily living - sleeping, eating, dressing and toiletting all focused on the needs of the school age child on the autistic spectrum. This means that there will be times when we not only attend the centre twice in one week but on occasions twice in one day.... I can't wait.

Sometimes

Sometimes I find J hard work

Sometimes I get frustrated and cross with him and then I feel guilty.

Sometimes I get fed up with saying “Sorry” to all and sundry for his poor behaviour and lack of impulse control

Sometimes I would give anything for the ASD and ADHD to go away so that people could see the lovely little boy underneath it all.

Sometimes I want to scream about invisible disabilities - a child in a wheelchair is clearly disabled and allowances are (well should be) made. Nobody understands about less visible challenges to a child's actions and behaviour or even considers them.

Sometimes I want to scream at the smug parents with their well behaved children who watch J with an irritated eye.

Sometimes I feel frustrated that the rest of the world does not understand.

Sometimes I wish J came with a volume control

Sometimes I feel I am not up to the job of parenting J and wonder if he would be different with a more competent and organized Mum.

Sometimes the stress finds me in this self pitying mood which needs to be kicked into touch.

But thankfully this IS only “Sometimes”. Thankfully MOST of the time I am more positive than this.

Unfortunately this is not one of those times.