Sunday, 27 February 2011

Social pressures

I find it very awkward when presented with a person/s who are insistent that we go out for a meal with them and their children and myself and all my children,that includes J.
It is invariably friends of my hubby who are inviting us out. He does give a brief explanation that J has special needs or autism, but this is always met with a "oh that does'nt matter, it'll be fine, just bring him along, we don't care".
Well it does in fact matter. It matters a lot when I am made to feel that I am playing up the behaviours of J when in public.
Why should J be put under stress to behave a certain way in social settings which always make him become noisy, rude ("poo poo, shut up" etc) and create stress and upset for myself and most probably everyone surrounding us?

'Special needs', the phrase, is not giving a good enough insight for people as to what your child is actually enduring and what can happen/does happen when put under pressure.
Autism is another word that many more people have heard of these days, but as it is a huge umbrella of impairments, no two autists are the same with their behaviours, abilities, needs and skills.
So if someone has met or has an autist in their family (but not a close daily contact family member) they tend to use this as a marker for all autists and so when they hear of someone with autism they think they know exactly how that child/adult will be.

I feel I have to explain to these people more in depth the deep reasons for me not wanting to present him to the public in such a social setting. I have to explain what he will do, what he will say, how he will be with other people etc.
A typical family pub outing would be as follows :-

- locate where the cola is
- drink the glass of cola given to him in one swoop
- ask for "cola cola"
- yell for "cola cola"
- spy cola on another table
- sneak over to table
- touch his groin area (he does this a lot lately)
- attempt to steal cola from table
- cry out when pulled back
- scream "cola cola"
- get given another cola
- drink it as if it will evaporate otherwise
- spy some beer
- attempt to steal beer
- throw himself on the floor
- lift his top up
- screech out loud
- yell "poo poo, poo poo"
- go to the toilet
- run the taps on full blast
- fill the sink with toilet paper and water
- make stressy noises when pulled back

Repeat this over and over again, the decibel of screaming gaining, the tension mounting, the stress levels filtering over into sweat and red boiling faces, the sadness of the tutting and staring from strangers.

Why would I want to put J, myself, my other children and other people through this?

"It does'nt matter?"
Yes it bloody well does.

So that is why I will not be made to feel guilty for taking him out to a family pub for a meal or a restaurant, as it is not a pleasant experience, it is not fun and it is most certainly not enjoyable for anyone.
And if after that full-on explanation I am still met with doubt, then I may just suggest they take him out for me. They do say the best way to learn is through experience!

Tuesday, 22 February 2011

The baby bottle incident

The other day we took the boys to Toys R Us.
We headed over to the baby section to get a stairgate, as W was very nearly on the move (and as it turned out he started to crawl half an hour after the gate was installed!).
Whilst I was browsing the choice of white metal gate, wooden gate, part wood part metal gate, slam shut, screw fix, pressure fit (oh the thrill of choice), I got a feeling that all was not well.
I felt  that the couple in the same aisle as myself were boring their eyes into me. I turned round, and there was J with a baby bottle in his hand. Empty, just.
He had opened a pack of them from the shelf, assembled the teat, and was looking for the ready made formula carton to pour in.

I took them off of him, to his cries of "bottle bottle bottle".

Now I am aware of the moral dilemma here, that it is not nice for the person who buys them. But the bottles were not sealed and were already exposed to the elements and other people handling them, so I thought that with a sensible parent head on the purchaser would wash and steralise them before use anyway.

He loves baby bottles. I have no idea why as neither he or his brothers ever had bottles, they were all (and W still is) exclusively breastfed, and only weaned onto baby cups and beakers for water.

On the verge of a tantrum involving the floor and screaming, I compromised and allowed him to choose a cup instead.

He choose a pink cup with the name Jessica on it.

Do I care that he choose a pink cup? Am I bothered by it? Course not! He does not suffer the prejudice of choice or the surmount of peer pressure. Plus, in a male only household it is quite welcome by me to inject some other colour into the house rather than blue.

So then. Crisis averted. Bottles remained in the store. Couple stopped staring and the pink cup is in situ in the cupboard.

Saturday, 19 February 2011

The paediatrician

Well, after the debacle of the last appointment we finally saw the school paediatrician.
As was told to me she was lovely. A natural rapport with J, calm, understanding, and easy to chat to.
I had to laugh when she said we may not see her next time, but could see X. I told her X was the reason I was seeing herself as I had requested no more appointments with X due to the non active manner she had and lack of understanding and care.

As J has dark blood coming out with his vomit we are being referred to the hospital for a camera down his throat. Of course (well I hope so) he will be put under general anesthetic for the procedure.
The paed suggested we go for genetic tests whilst he is under.
I have agreed, although I know the likelihood of anything coming out from these tests are very slim.
I have requested a first appointment of the clinic session so as he does not get hyper, manic and screamy having to wait.

When J was invited into the room to meet the paed he perfomed exactly as I said he would. He went straight for the toys. Then when she wanted to look in his ears and eyes he cowered in the corner, repeating the phrase "goodbye guys", and looking very frightened. As the paed said, his "goodbye guys" was echolalic as he had heard it being said by someone else, but he was using it in the correct context as he was trying to stop her from trying to look at him.

We discussed his eating habits, yet again. Even though he has such a limited amount of food he will consume, he is not underweight by any standard. In fact he is on the high level of weight, but as he is tall also this does balance slightly with the BMI chart she used.
Unfortunately I find that because he is such a good weight the issue of food is not really taken too seriously by professionals and friends/family.

But, when he has not eaten any vegetables for five years or any fruit in its natural state (not pureed form as we buy from Fruitapura) for four years, no fish for five years and no meat (apart from the little bit of chicken in a nugget) he is not meeting the nutritional guidelines of healthy eating.

His daily eating is as follows -

- two slices wholemeal toast, butter, marmite.
- two Petit Filous yoghurts
- one Fruitapura fruit pot (made for weaning babies)

- Sandwich made with Nutella spread or Marmite
- one Fruitapura fruit pot
- one Ambrosia custard pot (strawberry/chocolate/plain)
- handful of breadsticks or small bag of Twiglets

- Fishfingers (untouched) / Chicken nuggets (nibbled)
- Mccain Smiles / French Fries
- One Fruitapura fruit pot
- One Soya milk pudding pot

- Pom Bear crisps
- Jaffa Cakes

- Semi skimmed milk / water (he won't drink squashes or juices)

Now it may look like he is eating well, but this is the same everyday. No changes to the structure and point blank refusal to try anything else offered.
He either makes retching noises or makes himself sick if he smells or has other foods near him.

One visit (and our last outing for a meal with him) to TGI Fridays ended with him nearly vomitting over the next booth peoples food as it was placed down on their table. He peered over the booth and smelt the food and gagged in their faces.
Needless to say I was mortified and no matter how many times you apologise you just know they were thinking how he had ruined their meal out and why were we out with him in the first place if that is how he behaved.

Just today, when I had no choice but to take him to Boots the chemist as I had no-one to help me with the children, I had placated him with allowing him to hold (and to buy) some chocolate, so he was queueing quite well with no "uhh uhh" noises. But, he then let out a huge burp, in the earshot of the couple in front. I immeadiately said "pardon you, don't be so rude", but when a boy who looks like he is aged twelve because of his height, belches like that next to you, it does make you feel disgusted.
I could'nt very well start to explain his autism and his lack of social awareness and verbal communication could I?
So I had the feeling of uncomfortableness from everyone, including the man standing behind me, holding his baby son, and most probably thinking "my son will never be so rude" ( did'nt we all think our child, our first born baby, would never be like those toddlers we saw charging around, hitting, snatching, screaming etc?!)


 So now we are awaiting an appointment to come through to meet the specialist at the hospital. I feel quite positive that he will not be patronising like the A&E doctors were, and he will listen to me and understand that the only way anything will be performed on J is when he is under a general anesthetic. The procedure can be performed with a mild sedative to calm the patient but keep them awake. This would not be suitable for J and I would worry his brain would be screaming out in fright at what they were doing to him, but he would not be able to move.

Sunday, 13 February 2011


How do you deal with having a child with a disability?
I am sure as time has progressed from the initial worries and concerns something was not right (I hate saying that as it sounds as if our children are wrong, but they are not, they are just different and special) or from a test or scan in pregnancy, to the present day of living day in and day out with the diagnosis and more harder the reality that there is no cure and no magic pill.

I have been in the pit of despair,when I have had no idea what to do to help J, what he needs when he is having a meltdown, or when we have been stared at and judged by random strangers with nothing better to do than be interfering miserable sods.

Now though I find myself just accepting the situation.
I have adapted to his ways and his needs.

He won't sit down to eat his meals or snacks. He paces and eats. He does this at school as well ( as I saw him once when I popped in). Once upon a time I would have been there making him sit, listening to his cries and noises, but perservering. He would become so upset it could not continue so I let it be. Peace was preserved. So what if those lovely yummy mummies think it terrible that he does not sit down at a table. I would rather he be happy, than screaming, but conforming to their ideal.

I don't know if it is because I am so alert to learning difficulties, but lately I have seen so many more children and adults out and about (with family/carers not alone).

I was in Tesco the other week looking at DVDs. I suddenly hear this "ner ner" noise and this young lad veers towards me (I have the baby in the papoose carrier). I know he has autism as he is so like J. The dad comes haring round the aisle and firmly tells him to leave me alone. I just smile and say it's fine, I understand , I have my own autist at home, and he has this look of relief on his face, as if he was expecting a tut.

Later on when I am queueing, I spot the boy having a go at a computer game which is on for customers to try out. It was so lovely to see him absorbed in the jumping up and down with the character on screen and making happy noises.

It made me wonder how they felt having a child with autism. How they dealt with his ways and needs. How brave they were to bring him out (as I am not brave anymore) and how they were quick to swoop when he escaped their view.
They looked like lovely parents, if a little tired ( but don't we all?!).

I hope when people see me with J they think I am a good mum to him. I know some think (I know because I have been told by them) that I should not have had more children as it is not fair to J. But I love being a mum and if it was possible I would have another in a heartbeat.

Thursday, 10 February 2011

Meldrew Mithering

Watch out, (the new generation) Victor Meldrew is about (again).

I have said before and I will say again - I abide by the rules that if I am expected to be respectful in notifying companies/people that a change has occured and the appointment/meeting/collection etcetera is not viable for me to attend or complete, I do so.
But, I expect the same courtesy in return.

I spoke about the transport J uses to travel to and from school in my last blog entry.
I have a mobile contact for the school escort who assists the children in embarking and disembarking the vehicle.
I have always notified the driver and escort if J is not attending school and always give them plenty of warning.

So why then, when they (apparently through word of mouth) have broken down, did they not have the courtesy to let me know?
I can safely presume the female escort was not out in the wind and rain, wrench in hand, bonnet popped, fixing the problem, so was able to pick her mobile up and text me (at the very least).
All the other parents were notified apparently. The school was notified.

As for J and I? Well we waited. And waited. And waited.

As I have to leave at a certain time to get O to his school, I could wait no longer, and so had to stress about the fact J would have to come into O's school. If you want, have a read of a blog entry I did back in October, titled 'oooo that was a meltdown and then some', and you will read what occured and why I now dread that happening again.

I telephoned Js school to inform them he would be late as I had to drop O first.

J was teetering on the verge of a screaming meltdown. He was uttering his stressy noises and phrases "one more one more". I let him take his coat of. I let him wander a little as I settled O into his classroom.
I kept up the jolly tone in my voice and "happy happy J".

We got back to the car with only a few "cola cola COLA" shouts from him.

At school he walked in, happier and less stressed.

I drove away thinking I had done a good job and did'nt break out in a sweat, or crying.

Just a text would have helped and made me prepare J better. He was standing waiting for the van to arrive up the road and then was bundled into my car.
Something that people don't think matters, does matter, and does help.

Monday, 7 February 2011

School transport

J now travels to school via the transport service run by the local council.
He is collected and dropped off in a mini van with around 3 other children (depending on what day it is).
He loves it.
When I am on the school collection for O, the van drives past the road I park on and I often see him going past.
I wave every time, and all I get, if he has noticed me, is a look with the eyes. No ackowledgement, no excitment, just an " oh it's you" look.
I can remember four years ago when I had to conceed that he needed to be taken to his old school by transport as it was a journey of approximately fifty minutes each way and times that by four trips per day and it was getting tiring trekking out with a new born baby O, stopping to feed him (as newborns need mummy milk very often in the early days.
The guilt I felt was immense. But he was fine with it.
In fact I think he preferred to go with the transport people as he was'nt subjected to my singing along to the songs on the radio.
I am hoping that the proposed cut to school transport (in my area) will not go ahead and will not be extended to all aged children and nationwide.
I need to utilise the service now as I cannot be in two places at once for school collection.

If it came down to me having to drive him as the government cut yet another disability facility, he would be late for school in the morning, and I would be late in collecting him in the afternoon.
Yes I could pay for someone to collect either him or his brother, but where is that money coming from? Raising a child with a disability is a drain financially as it is, so paying for someone to collect him is not within my budget. Family do not live close by at all - the closest is around 80 miles away now from me.
So will the crack team of government truancy teams be on my case? Will they be threatening me with a fine or a prison sentence if I continue to fail to drop him at school at the correct time and not collect him at the correct time? Or will they threaten to stop his disability allowance as punishment? All of those have been carried out in the past on other people as reported in the newspapers so it is not just a load of hot air I am spouting.

What a wonderful predicament to be in. One can only hope the think tank and focus groups who are deciding on this new measure actually think about the reality and facts and not just the amount of money they can save and plough into silly ventures such as the latest 're-branding' of the Asbo.

Thursday, 3 February 2011


Going back around eighteen months ago, we went through an organisation that offered respite for special needs children.
The office that ran the respite would find suitable families that wanted to offer their home and their time to SN children. These people had to go through a three month waiting period, where they had to pass certain criteria and meet the standard expected.

J was matched up with a new family. They were a husband and wife of retired age. This was their first match and they were looking forward to meeting J and getting started as soon as they finished the three month wait.

When we went to visit their house it became clear they had a lot to learn about special needs. They had prized china on display in an easy to reach cabinet, figurines and glass wear, all at child level.

They experienced the J effect within minutes as he swept through the house trying to find the toilet and the exit routes.
J has to know there is a working toilet and that he can get out to the garden wherever he visits.

We started off slowly with hour long visits (and me not staying).
We progressed to three hourly visits.

The time that I was there at drop off and collection, I noticed that the husband would follow J everywhere. He was J's shadow. Even if J was going to the toilet he would be watching him. I am not implying anything inproper by this, more so that the man did not trust J and wanted to make sure he was never out of his sight.
Unfortunately, J does not like being followed and gets quite upset and noisy (making "neeerrrrrrrr" sounds).
I did mention this to the co-ordinator but it did'nt really change much.
J never felt he could relax in their house and it made my decision to withdraw him from the set up easier when the co-ordinator was pushing for me to let him stay overnight. Would the husband be on guard outside his bedroom waiting for J to dare to move?
I felt the couple had gone into this with the notion they were going to be saviours to special needs children. But what they had'nt really thought about was that special needs children are not just physically disabled. I think they were very shocked to be confronted by learning difficulties.

They were nice people, but not suitable for J, for his needs, and for his ways.