Monday, 29 September 2014

A Transport Update

I've had quite a number of friends asking how things are going with Adam's transport situation and whether or not anything has been resolved.

The short answer is not yet.  I'm still doing the school run each morning, and so missing Morning Prayer, but thankfully my training incumbent is being very kind about it.

The slightly longer answer is that the Disabled Children's Team have been digging away behind the scenes and are trying to unearth sources of funding for Adam's nursery hours and to find a resolution with transport.  I also sent a detailed letter to my MP, Mark Pritchard, asking for his help and have so far had a basic response letter and a personal voicemail from him saying that while the situation is a complex one, he is working to resolve it.  Similarly, the Shropshire Star are also likely to do an article on it.  In other words, I've got quite a bit of support and that feels very helpful.

A meeting has been arranged at The Bridge in a week's time which will gather all of the professionals involved in the situation, along with representatives from the Council to discuss it.  

Hopefully, there will be a resolution soon and I will of course update when I know more.

In the meantime, I did have one very good piece of news last week.  Adam has long since received the caring component of Disability Living Allowance because of the 24/7 care he needs from us, but he had previously been turned down for the mobility component.  I appealed this decision, on the advice of other parents in similar situations to our own, making the case that while Adam can walk/run/jump/climb, he is not able to do any of these things independently because of his autism, hearing and visual impairments.  On this basis, he needs constant supervision, we regularly need to perform lifting/carrying and other tasks like coping with his meltdowns and that this is far more care than a non-disabled child of his age would require.  With this and the supporting letters from the raft of professionals involved with our case, the appeal has thankfully been granted and Adam has been awarded the mobility component at the higher rate.  This now entitles us to apply for a blue badge, a motability car, and a disabled tax disc.  All of these things will make a huge difference so it has been a very bright spot in the week and I am grateful for it.

Friday, 12 September 2014

The Nightmare Continues - and gets worse!

After the nightmare that was the transport situation yesterday, I really didn't think it could get any worse.  I was completely and utterly wrong.  

This morning, the bus arrived and I walked Adam onto it, cheerfully encouraging him that it was time for the bus.  We got as far as stepping up onto the platform and I froze.

"Where is his carseat?!" I demanded abruptly.  

This was the first time I was anything other than polite with them.

"The response from the passenger carer was, "We've been informed by the office that he doesn't need a carseat.  It's perfectly safe for him to sit on the bus seats, using our seatbelt."

"He's three years old!" I snapped.

"The office says he does not need a carseat," she replied.

"There is no circumstance in which my son is going to travel on this bus without a carseat.  That is not acceptable," and I marched Adam off the bus before having to contain him as he melted down and behind us, the bus drove away.

On my knees in the middle of the driveway, with my arms wrapped around my thrashing, screaming, flailing son, I told him I loved him, that he was safe, that he was still going to school, it would just be a little bit later on - again and again until I could get him into the house.

I rang Adam's Dad at work and through my tears and anger, told him what had happened.  He was appalled and immediately rang the Transport Office, where he was told that someone would ring him back when they got into the office.

In the meantime, I did my best to occupy Adam in the garden by blowing bubbles which is something he is normally very excited by.  On this occasion, he just stood and stared blankly, not showing even a flicker of interest.  Adam simply cannot cope with changes to the routine he expects.

Eventually, it was time to go to school and so we drove - with Adam securely strapped into his carseat!  When we arrived, Adam was restless and upset and once the staff came out to collect him, he once again melted down.  I said and signed to him, "Goodbye Mummy" and gave him a huge hug telling him I loved him before handing him over to one of the TA's and I listened to his screams echoing down the corridor as she took him to his class.  I then asked if I might speak to one of the head teachers and was very grateful to be seen by the Deputy Head immediately.

Explaining the situation, she confirmed what I already knew, that Transport is not under their jurisdiction but that they would gladly ring on my behalf as a way of adding their weight to the situation.  At that moment the Headteacher popped her head in for other reasons and was beckoned in to also hear the story.  She too offered to help and explained that although I had already spoken to the Transport Manager yesterday that they are under a service contract to the Local Authority.  With my permission, she then rang the LA, explained the situation by way of introduction and put me on the phone to re-explain.  This manager promised to contact Transport to find out what was going on and that she would ring me back.

The Head's were incredibly kind, supportive and plied me with tea while offering as much information and support as they could.  As I was leaving the school, the LA rang me back and said that having spoken to the Transport Manager, they would not be providing Adam with either a carseat or a booster seat because the law on buses is different to that of cars and he doesn't need one.  She continued to say that they believe it is very important to encourage a child's independence and to treat them as their peers until it is proven that they need otherwise and that my demand for a carseat was discouraging his independence.

I firmly stated that I had heard what they said of the law but that I disagreed and there was no circumstance in which I was going to agree to my three-year-old, profoundly disabled son, travelling for an hour a day on a bus with no carseat of any kind.  I also stated that it was unacceptable to intimate in any way that they knew what was more appropriate for my child than I do and that he would not be travelling on transport until or unless this situation was resolved.

Returning to the Headteacher's office, I updated her and she then listed a number of further options they could pursue on my behalf.  She told me that there are a number of parents at The Bridge who, because their children cannot be safely offered Transport, are instead allowed to make mileage claims in order to bring their children to school.  She said this was a reflection of the profound needs of the children attending this school and that if Transport could not meet Adam's safety needs, that I should be able to make similar claims.  I was very surprised that such an option was available, but agreed that she was welcome to pursue it on my behalf and I thanked her for her help and the various other suggestions she had also made.

Returning home, I updated my husband and then around an hour later, my phone rang.  It was the Transport Manager again and she started the conversation abruptly saying, "I've received a mileage claim application from The Bridge School.  I'm ringing to inform you that I will not be paying you mileage, we have offered you Transport that is completely legal and safe for your son and if you choose to turn that down, that's your choice."

The conversation went downhill - rapidly - from there.

I firmly replied saying that she was not offering safe transport for my son, suggesting that it was appropriate to take a three-year-old child in a bus with no form of carseat at all - despite earlier promises to the contrary - was neither safe, nor acceptable to me.

She insisted that he is too big for a carseat and that as "a strong, sturdy boy" he does not need one; she insisted that a booster seat provides absolutely no safety protection at all and is purely intended to raise a child up so they can look out of the window, something that is not necessary in a bus with their larger windows.  She insisted that they have no legal requirement to provide a carseat and that they are doing the right thing by Adam in encouraging him to be independent enough to sit in a seat on his own.  She insisted that I had never been offered a car seat in the first place or that if I had been, that the representative had given me incorrect information.  She insisted that she is "a transport professional" and it is her job to know what is and is not safe for children.  She notified me that Transport have an excellent safety record and have never been in an accident and that even if they were in an accident, the bus is so much larger and higher than other vehicles that it is not possible for passengers to be harmed in any way.  

It went on and on and on.  I argued with her, I firmly notified her of what I would and would not accept.  She even said, "Do you really think I would be having this conversation with any average parent in Telford, offering to pay them mileage to take their own kid to school?!"  At one point, my anger turned into tears as I tried to explain to her that if I am protective of my child then it's actually quite understandable considering I had watched him on life-support and waited as he nearly died.  Her response was to snap at me, "You have no idea what my background is, your son does not NEED a carseat and I will not be offering him one.  You can either choose to accept my offer of transport as it stands or you can turn it down, otherwise we're at an impasse and I will be taking him off the transport list."  I told her I would be writing to my MP and her response was to tell me to send them that letter and she would respond with all of the reasons why the offer they were making was both safe and legal and I could add that to my files.

Needless to say, we ended up at that impasse and the conversation eventually ended.

A further conversation with Adam's school and now, the Disabled Children's Services are investigating, the Local Authority will be receiving a complaint and are again involved and I will be writing to my MP seeking his help.  In the meantime, Adam will not be taking the bus!

During a lengthy conversation with the Disabled Children's Team, she said that the law may be different on the buses, but the Council have long-since committed to treating children in the same way as they would in cars and so providing suitable carseats - particularly for vulnerable and disabled children!  The school have now written a letter detailing the extent of Adam's profound disabilities and are fully participating in and supporting this investigation.

Horrendous does not even describe this ongoing situation.  

All I wanted was for my son to take the bus to school.

Thursday, 11 September 2014

The Bus Nightmare

Unfortunately, Adam taking the bus seems to have rapidly developed into a nightmare.  

I will freely confess that I am *very* protective of him (I think quite understandably!) and one of my "hot issues" is car seat safety.  When I was still pregnant, through the help of a good friend, I did a lot of research into car seats and eventually bought a special rear facing seat from Sweden that would continue to hold Adam until he weighed 25kg, or around age 4-5.  I now know that it is much MUCH safer to keep a child rear facing until their spines and necks are strong enough to cope with the impact of even a small collision.

All of that to say that, for me, turning him forward facing is actually a big deal and not something I have wanted to do before he's 25kg.  But when we made the decision to put Adam onto the transport buses run by the council, I had no option.  They only provide forward facing seats and, using the catch-all phrase of 'health and safety', they wouldn't allow us to provide them with a carseat.  However, we were assured that he would remain in a properly restrained child car seat (albeit forward facing) until he was 25kg.  At the moment, he is only just about 20kg.

When the bus rolled up on Tuesday, they had an child car seat fitted and ready for him.  But as the attendant was strapping him into it, I noticed one of the straps was twisted around - in a five point harness, this is a definite danger issue so I straightened it.  She didn't appear to notice.  I took a photo of him (which I have not shared because he was crying after bumping his face as I previously wrote about) but it wasn't until looking at this photo after the bus had left that I realised his *other* strap was also twisted - she hadn't noticed or straightened that and neither had I.  Thankfully, there were no bus accidents that day, but if there had been, this would have been the difference between a little bump and potentially serious injury for my son.  It's a big deal.

Yesterday, the bus rolled up and he was strapped into the seat and I noticed that this time, the three point seatbelt was being used instead of a five point harness, but she had left the section across Adam's tummy so loose it was at least four to six inches away from his body.  If there had been an accident, this would have allowed Adam to slide right out from inside the seat belt and again, risk serious injury.  Because I noticed this, I tightened it.  But as I stepped away, I noticed that Adam was in a different seat - no longer was it a child carseat with the five point harness we had been promised, it was just a highbacked booster seat typically used with older preschoolers.  I pointed it out and queried the change and she said they had issues with the previous seat "fitting".  Not knowing what that meant, I asked her to clarify and so she rang her supervisor and put me onto her.  I was informed that in fact, the first seat they had used was only rated to take an 18kg child so he never should have been in that in the first place and this was the only other option.  I wasn't happy but I also know that if Adam sees me becoming upset, then this triggers a meltdown because he is very sensitive to emotion and doesn't understand why Mummy might sometimes be upset.  I also know that if I had taken him off the bus, he would have had a meltdown as he is not able to cope with change like that.  

Despite not feeling happy about it, in a difficult situation, I allowed him to stay on the bus but once he had left for school, I had a perfectly polite but lengthy conversation with the Transport Manager for the Council.  She explained to me that in fact, the laws are different for buses and while children under 4'6" or around 12 years of age are required to use a carseat in a car, when travelling on a bus children over THREE are not required to use any kind of carseat at all!  She explained that simply in providing a booster seat, they are actually exceeding the law.  I was shocked and horrified.  A bus is still a moving vehicle, travelling on the road, why on earth are the laws so different?  She also confirmed that they would not allow us to buy and provide the bus with a carseat....for health and safety reasons.

I was really, really not happy (to say the least) and had a lengthy conversation with Adam's dad about it last night.  We decided that we needed to give this a chance to work and I possibly need to relax my protective stance over "my cub" just a little bit and so long as they provide a booster seat, we will consent to him travelling on the bus (which is what I had agreed with the Transport Manager).

So this morning, the bus arrives.........

.....and there is NO carseat AT ALL.

They expected him to sit on the ordinary bus seats, in an ordinary seatbelt at the age of THREE.  Worse still, the passenger carer insisted the message she had been given by the office was that I had consented to this.

How on earth does trying to BUY the council a suitable car seat and being refused translate into agreeing that he doesn't need one at all?!

Horrified does not even come close to my reaction.  And so, I was on the phone to the office again.  They also insisted I had agreed to Adam not using a carseat and said the only option was either him travelling as he was, me taking him off the bus and taking him to school myself or them sending out a separate bus just for him sometime later in the morning with a seat fitted.

I was FURIOUS and while entirely polite with the bus staff, made it perfectly clear this was not an acceptable situation.  I removed Adam from the bus and then, as it rolled away without him, had to cope with a complete screaming, thrashing meltdown from him as he didn't understand what he had done wrong to be taken off the bus.  Once I managed to wrap myself around him enough to get him into the house, it was full on containment procedures to help him come to terms with the situation.

An hour later, I took him to school and, because he was being walked away from me instead of having already endured the very difficult situation of 'goodbye Mummy' at bus time, another full on meltdown occurred requiring the specially trained school staff to surround and contain him in the hallway.  I walked away from my son with tears in my eyes as he screamed and thrashed on the floor, desperately reaching out to me.  Taking him into school myself meant that I could not attend Morning Prayer (and for those who don't know, as an ordained minister in the Church of England, this is a requirement for me) but thankfully, my Training Incumbent was very understanding about it.

At 9:01, Adam's dad was on the phone to the Council demanding answers...he received a verbal apology and was assured we would receive written confirmation that this situation would not recur and that *at bare minimum* Adam would be transported in a high backed booster seat with *no* exceptions.  We have not yet received this confirmation but I trust it will be coming.

We have both agreed that if this situation is resolved tomorrow - and stays resolved - then Adam can travel on the bus, if not, Chris will be altering his working hours to allow him to transport Adam to school each day.

This is not the smooth transition I had been hoping for!

Wednesday, 10 September 2014

Tesco Mum of the Year

I am delighted to say that I have this morning received an email from Jane Plumb to let me know that they have finally received the necessary permissions from Channel Five allowing them to post the full six minute video played during the awards ceremony for the Tesco Mum of the Year.

This video includes other contributors that were edited out of the broadcast version (like Jane's son Oliver explaining why he nominated her for the award, along with Jane's sister expressing her support for the work)  It also includes a longer segment of my interview, recorded while I was still at college earlier this year.  (Those who have followed Adam's story will know that his diagnosis of autism has since been confirmed, but at the time of recording, that wasn't yet the case).

So, if you wish to watch the complete video, please do so by visiting the Group B Strep Support YouTube page here.


Please do share this video or other information on how easily Group B Strep can be prevented with pregnant women or those considering having babies and do support the work of this fabulous charity.  You can find any information you need on their webpage at http://www.gbss.org.uk


Tuesday, 9 September 2014

The School Bus

Today was a big new "first" for all of us - but most especially for Adam.  The new term started for The Bridge (his special needs nursery) and this year, for the first time, we're trying to see if he can cope with travelling on the school bus.  Our local council provide an entire fleet of special transport buses that work with The Bridge but up until now, I've been able to take Adam into nursery myself.  This year, as he is in a new class, school doesn't start until 9am while I start work at 8:30am so I had very little choice other than to try.

It seems such a huge step though to bundle my little boy onto a bus, ask him to go with two strangers he's never met before, and trust that he will arrive safely at school - and hopefully without having a massive meltdown in the process.  Needless to say, I was pretty tearful when I woke up this morning...

We normally leave the house at 7:30 (when Adam is going to his mainstream nursery) but his school bus was coming for him at 7:55.  Even though Adam cannot communicate particularly well, he is very attuned to the timings of his routine and if anything is out of place or out of order, he starts to become agitated.  At 7:30 came and went, Adam started to pace, to throw his toys around, to scream. It was clear that he knew something was different and he didn't like it.  By 7:45, his Dad attempted to cheer him up and distract him by playing a chasing game around the main floor of the house.  This prompted huge giggles until precisely 30 seconds before the bus pulled up outside of the front door when Adam tripped and fell, smacking his face directly into his little toy keyboard.  His glasses went one way, his hearing aids the other and he ::screamed:: - quite understandably!  

This was not quite the start to a new experience I was hoping for!  

However, with the bus outside the door, we had very little option so while doing our best to cuddle and comfort him, Adam had to be put onto the bus - albeit with attempts to encourage excitement by pointing out the bus and telling him he was allowed to have a very special ride.  However, being buckled into a strange car seat (forward facing for the first time - gulp!) and being buckled in by a woman he didn't know, did not go down well.  Adam was clearly both confused, upset and still hurting.  Having Dumbles to suck on and Ninky Nonk in his lap did help, but he was still sobbing as I had to walk off the bus and leave them to drive off

...at which point I burst into tears...  

Of course I rang school at precisely 9:01am and was cheerfully informed that Adam was absolutely fine and happily playing outside so I can only trust that he did calm down at some point on the trip, but it won't be until tomorrow morning (when we get to do it all again!) that I can ask the driver and passenger handler how it went.



Friday, 5 September 2014

The Power of Love

This weekend, St Andrews Church is full to overflowing with absolutely *stunning* flower displays celebrating "The Power of Love".  This morning, I had a sneak peak before the show opens, these are just a few of the displays:


Of course, no photo can possibly do justice to the talent and effort of some of the top flower arrangers in Shropshire, so do come and experience it in person.  

Admission is just £4 for adults, £2 for older children and free for under 12's.

There is also a country food fair in the grounds, entertainment for the children and demonstrations throughout the weekend.

Opening hours are 10am - 5pm today, Saturday and Monday and 1pm - 5:30pm on Sunday with Choral Evensong at 6pm.

For more information, please visit:  http://www.standrewschurchshifnal.org.uk/flowerfestival.html

All funds raised will go towards the repair of the church sandstone.