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journey on buses for child with learning difficulties

Clare35
Clare35 Community member Posts: 9 Listener
My son has 1p36 deletion and has learning difficulties. Recently we had to make a decision about changing the school bus he normally goes on to a different one as he upsets the children with his noises. We have tried a couple of toys for him but have run out of ideas. He tends to throw things and he loves spinning things as well would anyone be able to give us a tip?

Comments

  • savvymum
    savvymum Community member Posts: 5 Listener
    He sounds as though he is getting anxious about the bus journey, try showing him pictures of the bus and maybe doing a timeline to help him sort his day and show him what is going to happen up to him getting the bus.
  • JimJams
    JimJams Community member Posts: 174 Connected
    You could also try distraction toys on the bus. Find something he really likes or is intrigued by, attach it to his jacket so it cant be thrown. My son does a lot of pacing and screeching noises, which can be quite stressful for us to watch, we dont try and stop him completely but will distract him with an interesting toy. He likes to look at things up close so we gave him a coloured lense to look through or one of those cameras with pictures inside that you can rotate round. We also put things in my sons pockets and he is distracted by this also. I am sorry you felt you had to change buses, its sad when people dont seem to love everything about your child the way you do. Even the quirky behaviours some of them have. Good luck
  • Heather
    Heather Community member Posts: 168 Connected
    Hay my son has the same 1p36 deletion! Amoungest everything else. I've had people complain about his constant niose, even neighbours knock and ask if we could get him to be quieter.....simple answer-NO! The more you try to restrain them the worse. School and home we have tried the "little vioce" indoors, "big voice" outdoors. Which works for a nano of a second. Or the funniest one is to copy, our son laughs and then tries to imitate us and he can't. It's such a natural, unthinking process that he isn't even aware he is being so vocal. I am lucky his taxi and escort are brilliant. They over come the short 15 minute journey problem by allowing a portable DVD player at the front and they play short cartoons and lots of music. For the bunch they take in, it works. But we know everyone of our children is different and it's finding the right distraction to help. Good luck
  • Clare35
    Clare35 Community member Posts: 9 Listener
    Thankyou everyone for your tips i will try some probably all and see what happens he does play with toys but for a short time only and loses interest.
  • Clare35
    Clare35 Community member Posts: 9 Listener
    hi i am not happy. my son went on a new transport bus for school today and because he got anxious and upset the other children they have told me they can't take him so now we face up to 4 weeks of my son not being able to go to school as we don't have any transport and cannot afford to pay for a taxi everyday. Has anybody been in this situation? Does anybody have any ideas how i can get around this situatution? Advice will be really welcome
  • Naomi
    Naomi Community member Posts: 29 Listener
    I had a similiar expereince once and it was extremely stressful. I was able to get an appointment with the local young persons mental health team (through the paediatrician) and they made some useful suggestions such as placing him in his favourite position next to the door (less claustrophobic) giving him his favourite toys and a picture of the destination. A friend had the same problem with her son, but the council was apparently very good about organsing and funding a taxi for him. Can you find out what the council's obligations regarding transport are? If the school and the council's transport department and your social worker are all being unhelpful, try and get your son's paediatrician on side. Good luck.
  • Clare35
    Clare35 Community member Posts: 9 Listener
    naomi thankyou the school is not happy with the situation and bless them they themselves are going to pick my son up tomorrow and i managed to get his father to take him friday and next week (we are not together) but after that i have no idea what is going to happen. transport say that he is their top priority at the moment but i think it is because that no one sits beside him i.e.escort and there are too many stoppages as in picking up other children but i think i might have found a way to calm him by panpipe music so fingers crossed
  • Heather
    Heather Community member Posts: 168 Connected
    Hi clare
    What a nightmare! But legally if you live 5 miles away and have a statement you are entitled to transport? (Double check the distance though!) When my son first started I was very unhappy the education board provided a 52 seater and wanted my son to be 1st pick up and take 2 1/2hrs to do a 15 minute journey. I kicked up a stink but obliged first day. My son was so stressed he wet himself and fitted. the bus driver had 1 escort for whole bus and said he refused my son for any further trips. I asked him to sign a note to say he refused to transport my son, took it to the transport authorities and demanded a taxi...2 days later my son was in a taxi, now he is so happy he joins 5 others on the journey and the escort is medically trained. Shout, shout and shout. Shame you have to, but eventually people will listen! Good luck
  • Willow
    Willow Community member Posts: 18 Listener
    Maybe a trabasack would help, it's a lap tray with a bean bag base. Have only seen online so not sure what you could attach it too to prevent it being thrown. But, he could then have a base to play with spinning stuff on, or aquadraw (no mess colouring), or using buggy book clips attach stress balls to it
  • Clare35
    Clare35 Community member Posts: 9 Listener
    Heather thanks for advice i have been told he is top priority and we live about 45mins to an hours drive away from his school. It is only because an escort does not sit beside him. He is fine at school when they go on an outing. Willow that does sound good because maybe i could get something soft for him to spin on it but most spinning things are hard but thankyou
  • JimJams
    JimJams Community member Posts: 174 Connected
    My son had a bit of an unsettled day on his first day at school as the escort service did not arrive to take him to school or to bring him home. He was extremely upset and we had spent weeks preparing him for the taxi coming, when it did not turn up it messed up the whole first day and first week of school. I tried a couple of people at the escort service office and got nowhere until I went up the chain of command to the highest, it got sorted in no time when the director got involved. Its not good having to constantly fight for our children to receive the help they need , but unfortunately it is a necessity sometimes. The advice I got from someone was give them once chance to sort it, then go to their boss, then their boss and so on till its fixed. This is the method I use most of the time now.
  • Heather
    Heather Community member Posts: 168 Connected
    Taxi and escort services seem to be a huge problem. Because I now have a fantastic service who knows if next year the authorities decide to cost cut and ALL change again. But I have made a point of keeping in touch with the transport authorities and telling them how good my service now is and that I don't want it changed. I know the taxi firm have secured a 5 year contract, but that's only because they have had such a good track record. I have heard some real horror stories regarding taxis and exscorts. The children are entitled to an escort and I wish more effort was put into training the escorts. Mine went through first aid training and epilepsy training because she asked at the school for help....you don't get many people actually put themselves out these days. I'm lucky and don't want to ever let them go!
  • Clare35
    Clare35 Community member Posts: 9 Listener
    I am glad you are ok with the service and it is great that yours is good heather. I was told that my son would start on his old bus again but today they rang me to say that he could not go on the bus and it will be a few weeks until they sort transport out i am not happy so maybe i should talk to the boss but personally i think they don't really care about it. So again i am stuck as to what i should do. my son's father said he could take him on his days off but i cannot get my son to school any other days but the school has said they could pick him up monday. I am really stressed out about all this and it is not helping me or my family surely they should have a back up plan if anything like this occurs
  • Heather
    Heather Community member Posts: 168 Connected
    Don't despair Clare. You do have the power to cause awful embarassment to the transport people. try being assertive, I know it's hard when you are constantly fighting and tired. But threaten newspaper coverage, go to your local MP and complain. You are being a caring parent who is trying to get the best for your child....there are many parents who couldn't care. Getting MPs involved I found gets very rapid responses. It shouldn't get to this situation, but unfortunately the people who don't live with our "problems" don't appreciate how stressful it can all be.
    Think of you! Good Luck!
  • Clare35
    Clare35 Community member Posts: 9 Listener
    Hi heather it hasbeen 2 and a half weeks without school transport and i have had to rely on family and friends to take him to school even his own teacher has made the journey. I have got my local councillor involved and yes we have gone to the paper as well as i am totally fed up with the way this is being handled. They keep saying they are trying the best they can also when my stepdad rang the transport office they said it could take up to 7 weeks to sort out transport ridiculous but i will let you know when it is sorted and the nightmare has ended
  • Heather
    Heather Community member Posts: 168 Connected
    Bless your heart Clare. 7 weeks is a dreadfully long time. Doubt if the upset is helping your son's stress levels either? Keep bashing away! Eventually the "powers" that be will get bored and do something about it!

Brightness