Parenting a child with additional needs

Hi everyone, First off, this is not a pity post. We don't do pity in our family! Our son is a 2 and a half, cheeky, intelligent little boy (and very lively!) He has more than his fais share of medical problems. He was born at 34 weeks after a pregnancy in which we were told 5 times I had miscarried, and several times were asked if we wanted to terminate. Our little bump had other ideas and kept fighting. After birth he was quite poorly and was put on a ventilator. He battled again (even when they wanted him to rest his body) and we took him home after 3 weeks. And then the fun started. He was soon diagnosed as being profoundly deaf in one ear, struggled to put on weight and fed almost constantly. We now know he is gluten, lactose and nut intolerant. He is so sensitive that even tiny traces cause a reaction. He didn't sit on his own until he was 13 months and has just learnt to walk. They are now investigating him for cerebral palsy because of his delay. Our biggest nightmare is communication. He uses a limited mix of makaton and speech coupled with a huge amount of guesswork on our part. The result is he gets very very frustrated and ends up shouting or throwing things because we just don't understand. We have finally persuaded his paediatrician to refer us to speech therapy but there is a 6 month wait.... So, what I'm asking is 'Is there anyone else out there who also has a child(ren) with communication problems and how do you manage it?' His body might be a bit behind but his brain is more than capable. His consultants have said he is certainly above average intelligence and this is making it harder for him. If you have other children how do you keep the peace and make sure the others aren't just convenient carers?

Comments

  • My first suggestion would be makaton but you're already doing this. Have you tried picture boards showing wants/questions? We've done that with kids at the nursery I used to work at.



    I have a friend who has had some communication problems with her son (he was born with a genetic condition and really struggles with talking/communicating what he wants). I'll ask her and let you know.
  • I haven't tried picture boards. Are they published or do I need to make my own?

    Any help/suggestions are welcome, even second hand.
  • The picture system is often based on PECS - picture exchange communication system. It works through different levels and usually is started by a Sppech & Language therapist; good that you're getting a referral.



    I teach children with additional needs and have used similar systems. Pictures can present challenges initially as the child has to make the link between the picture and their thing which may or may not be the same. This type of system therefore often starts with concrete (real) objects, then photos of real objects and finally pictures.



    With regard to other childre, I'm not a mum myself and never preach to parents as I don't know what parenting is like at any level. What I sometimes think happens s as you say, other kids end up taking on a caring role which is hard. My thinking would be if your son is intelligent, cheeky and lively, then treat him as you would your other kids if he behaves badly. It's okay to be frustrated angry, but it's not okay to hurt others or damage things. I think the key here is to decide what's acceptable to you as parents, and what you will do f the behaviour occurs. Then you implement this consistently again and again. Be prepared to weather the storm initially - it can be hard, but ideally within a couple of weeks you should see an improvement. If not, back to the drawing board



    Something else you can try if he's able in understanding is Social Stories. It may be a bit early for this, but essentially they explain what happens, how others feel, what you would like instead, and finally how people feel then. This is very vague - there's lots more behind it, and if you google this and Carol Gray you'll get more info. I've used them successfully with quite a few kids. They were designed for kids with autism but work well for others. Again, the key is in the repetition and getting the message through when a child is calm.
  • You can get books of ready made social stories but I find often you're best writing your own as you can insert phrases that you use a home, and again at this early stage you can insert photos to reinforce what you want, eg. A photo of him playing nicely or whatever.



    If you need any more info on anything or just want an ear, feel free.
  • Thanks Clag - I knew t had a 'proper' name. We used ones on a plastic card that had velcro on the back so that the child could actively played it. I've sent the email to my friend and will let you know.

  • So much stuff out there that I need to get my head round. The social stories are a little beyond him at the moment, but they may help with his sister. She is nearly 9 and really has been through it with him. He does like spending time in hospital so that messes up any routine I've got them both into.

    Should I wait for the s&lt before using the cue cards or can I start them now? I'm thinking they may help to explain what is going to happen next, and maybe have them velcro'd onto a board so he can tell me.

    Today, he was eating grapes abduction signed that he was happy. My mum was with us and didn't understand and he actually said it as he signed. He got given big smiles, hugs and more grapes!
  • Hey - by 'eck - that's a great sign! It's the small steps that are sometimes the most rewarding!

    I've heard back from my friend and her advice is: Pressure your consultant/GP into speeding up the referral. 6 months is the average but you can get in quicker if the GP puts you on a fast track. She did speech therapy with the support of a local charity and Makaton with her son and it took a while for him to 'grasp' it but it helped with his overall development... so much so that when she finally got round to seeing the consultant he asked her - why is she here?

    Are there any organisations in your local area?

    If you think that your son can handle the cue cards- try it and see how he gets on. You can always say that you've tried that method when you get to the specialist.

     

  • I'm no expert but I'd give the cards a try by 'eck, can't see any harm in it. Great that he's trying to vocalise too.

  • We tried going to a group run at the local sure start centre but most of the kids who went seemed to have problems because of the home circumstances rather than a physical problem. For example, lots of the parents had to be encouraged to talk to their children, get down on their level and make eye contact. I was hoping to learn more makaton, tips for dealing with the tricky behaviour, and letting him socialise with other children.

    I've been back in contact with the ndcs (deaf children's society) and they are sending out resources on signing, communicating with a toddler and trying to get us on a weekend course to give us some more support.

    I'm hoping to start making some cue cards with his sister tonight using a couple of catalogues we have lurking.
  • Hi by 'eck,

    I suggest asking if there is a pre school child development service (CDS) locally -  a joint service run by paeds, speech therapy and early years teachers ( and psychologists if you need one) for younger children with higher levels of additional needs. Communication and behaviour are high on their list.  Your paediatrcian or HI teacher (if you you have one? not sure ), or even Health Visitor should know, or try googling your council's family services directory (  not all FSDs are up and running yet).

    The CDS would be in a good position to support you in all these areas that you highlight and help you paln for entry into nursery/ school.

    good luck

  • by 'eck, it's hilly wrote (see)
    We tried going to a group run at the local sure start centre but most of the kids who went seemed to have problems because of the home circumstances rather than a physical problem.

    Yup. If you're making the effort to do as much as you can and researching stuff yourself, by the time you get to see a specialist, chances are you'll know as much about your kid's condition, and how to work round it, as s/he ever will. I've heard this said time and time again by people with various complex medical conditions: that they seem to know more about it than the so called specialist. My mum has MS and every new treatment/drug she's got over the years has been something that she or my dad researched and found out about themselves, usually via internet support groups, then printed the info off to take in to the doctors to ask about. Most times, the doctor/s didn't know anything about it and went on to the same websites my folks had already been at to find out more about it!

    This isn't intended as a criticism of doctors, specialists or the NHS in general, it's just an observation. I suppose it's just a case of you can concentrate all of your efforts on yourself/your child but they have a huge caseload of different people to deal with.

    Sign language, picture boards, and if he's going to have a long term problem with speech then (once he's old enough to learn to read) word boards as well. I have a friend of a friend who is well above average intelligence but has severe cerebral palsy and very poor coordination which makes sign language impossible. She uses a word board to communicate. 200 or so core words, some core sentences and phrases, and then A-Z letters to spell out stuff that isn't on the board. Laborious but effective.

    Dealing with tricky behaviour? Same as you would with a 'normal' kid. I know a couple of 'disabled' kids whose behaviour is utterly atrocious cause their parents feel sorry for them and make allowances due to their disabilities. They have turned into vile little horrors and it's not really their fault. From what I've seen, 'disabled' kids who are subject to the same behavioural expectations as their siblings seem to turn out best with regards to their manners and overall personality.

  • We have started using time out (it used to be his play pen but now we use a chair) to deal with stressed behaviour/aggression. Shouting because he is frustrated doesn't mean a consequence (his sister's understanding) but throwing/hitting/hair pulling because we can't understand does.

    We try to allow him to do as much as possible but some things are limited because of his food problems. He can't do parties or toddler groups unless I know what the feeding arrangements are.

    He goes to nursery 1 day a week and the staff there are amazing. They fight hard on our behalf to get him support and help him with the socialisation but we can't afford anymore than that. Will they need to use the same cue cards with him? He is in a group with younger children
  • Usually when communication cards are used, they're used across all settings. Sometimes it's good to share, others prefer to have 2 sets and this can be useful when there may be different things on offer.
  • My mum has started learning some basic signs to use with him and he's really responding to it. We also did time out with him for the first time yesterday. He looked completely shocked and sat there for nearly 2 minutes. I put him back and he seemed to realise it was because he was naughty.
  • That's great by 'eck! How is your daughter responding to the new way of teaching him?

     

  • 2 of my boys are on the autistic spectrum and whilst intelligent and able had problems with communication............the eldest was delayed a bit in speech but even when they had good speech it still hid a problem with communication and processing of language........which led to frustration and bad behaviour

    we did use the picture system.........the pictures were just over an inch square and then laminated and velcose on the back...........if you needed the child to do certain things like get dressed...........you just velcroses the pictures in order to the strip............when they do one thing they put the picture in the box at the bottom............so they can just work on one thing at a time.............

    with mine they would get over worked up about going to play ........so if they had a sequence of events......eg get dressed.have breakfast,,,teeth then shoes........then play........they knew exactly what was happening and they could keep more calm.......

    they used this for years....and a version in school............seems silly to use pictures for an older child who can read and write..but it helped their understanding.......

    my youngest is taking 10 GCSE's next year and will pass them all at c or above.......but he needed this picture reminder until he was about 10.......

    the eldest had extreme behaviour difficulties as he got anxious whenever he was with children his own age ..........this is really hard for parents as no one likes to see their child being cut off from their peers because they are attacking them.........the earliest they can get help for it the better......so if he needs help in nursery school he gets it......as its hard to get a good school

    good luck

  • Well, i have ordered a set of makaton books with the symbols in so we can make our own cards up. I think he has struggled with formal signing because he can't move his hands independently. That means 'more' looks like 'g' (which is part of our sign for Grandad.

    But, I have made contact with someone who is goinf to push for earlier speech therapy.



    Seren, how did you help your boys integrate? I know several kids (and adults) on the Autism spectrum and it seems to be really hit and miss as to whether they get supported in a main stream school or sent to special schools.
  • have you tried posting on the special needs board on Mumsnet talk? you may get more answers on there as there is quite a dedicated group of people who post on there and support each other. http://www.mumsnet.com/Talk/special_needs

  • when they were young i kept on taking them to playgroups and sports centres etc to integrate..even though i always had to stay within a couple of feet of my my eldest so i could read his emotions and sense when he was getting wound up..........so i could try and get him away from the situation before he got too far,....otherwise it was a restraint situation which was never great...........

     

    both mine started in mainstream as they had not been diagnosed...............but it had a really crap headmistress............eldest got a one to one quite young as he had behaviour problems in school as he couldn't cope with the routine and the kids..........but when he was 6 we got a diagnose but the headmistress got the diagnosis first and decided to permantently exclude him because she could not cope with autistsic spectrum in the school ( this was 12 years ago)............after a diddicult 5 years ( mixture of permanent exclusions , and individual classrooms ) he ended up in a specialist residential school for  5 years where they did a wonderful job building him up and dealing with his anxieties.............now in mainstream colege , with 2 part time jobs and if you met him you would not know he had any problems underneath now......

    youngest came out of mainstream as the headmistress was maiking it difficult even though he wasn't showing the behaviour problems...........in a school with a unit for the rest of primary where he gradually accesssed more mainstream lessons with support.......

    now he is going into GCSE year in top set for everything and still has support for when he needs it.which isn't so much...........we visisted 8 comps in the area when we were deciding schools and we chose teh right one...........only disadvantage is its a all boys school..........but apart from theat the school is brillaint in understanding that little things can make a difference to him......

    i think that if the youngest hadn't got the bad role model of his eldest brother and had had a more understanding headmistress in his first school.........he would have been fine with mainstream all along...........

    its great now that they can access mainstream all the way through comp with one to one support..............i think you really need to look at the schools and the individual child to work out if mainstream or specailist school is the best............i like the schools with the units attached so that teh children can move between the two easily and where the staff have more understanding........

    its hard work sometimes getting the support and the schools that they need....but worth the fight in the end when it is right it makes such a difference........

  • Well, I am realising that I am going to have a huge battle on my hands. We sorted out an informal visit to the local school with the specialist hearing unit and they were happy to consider taking him. Spoke to his teacher of the deaf ( who is new, never even told me her name) and she said he couldn't go there because he wasn't deaf enough. ARGH!
  • Have you tried pursuing the sensory route? There are some charities such as NDCS, Sense and Action on Hearing Loss that may be able to help you generally with advice on developing communication when someone has sensory loss of some sort. And they may be able to help with getting things moving on the care and support side of things also.

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