i dunno where to begin really....

but im gonna try....

i am the proud parent of a 3.5 year old who has been diagnosed with GDD.. he has absolutely no speech development at all, apart from a system of grunts and moans that we are able to interpret.. he is a little slow in his motor-skill development but his aural understanding is great - he responds to verbal commands and understands some sign that we use with him.... BUT he has a viscous temper in him, which results in lot of kicking, hitting etc (which we attribute to his frustration at not being able to talk).  His diet is limited to say the least, he can use the toilet when asked but not willing to go by himself, and has limited scope in play (he has his 3 or 4 favourite toys to play with and thats it)

however, me and my wife are now at an absolute end of our resepctive tethers with how his treatment is progressing

he is such a loving child when he wants to be but has an absolutely evil streak in him that causes him to lash out at those closest to him, especially his older brother which causes obviously a greta deal of tension and friction at home...

he has been seen at the local childrens centre over the last 18 months (on and off, mind) by various doctors and has undergone a series of speech therapy sessions, both singularly and within groups, but these have been so sporadic that he seems to put one step forward, and then 2 steps back.... we are currenly in a situation whereby we have no idea when his next session will be as yet again the therapist has left the building as such (in 18 months he has had 4 different therapists... he is a boy who builds up rapports with individuals and the loss of each person sets him back further), and the paediatrician was supposed to get back to us regarding his behavious after our last appointment (dated 5th august!!!) and guess what, we've heard nothing from them at all!!

he is currently in his last year at nursery but his behaviour is becoming more and more problematic, culminating in the last week where he managed to send a little girl home from nursery with a split lip... we were hauled in front of the chiefs of the nursery who made out that we are bad parents, he is uncontrollable and that they now want us to fill in on their sessions to control him!!!!  the nursery had been good to us up to this point - my wife was head of fundraising there - but since this last week she has told them she will not be doing it anymore.... they have known about his condition from the outset - we have kept them informed at every opportunity, and for us the really really disappointing bit, no, not dissapointing, but really really maddening thing, is that in march of this year they were told to apply for funding for some one-t-one- tuition for him.. now at the end of september, nothing has still been done about it!! apparently they are still compiling a file on him in order to apply for funding.... too bloomin late as far as im concerned!!  Finally this last week we were asked to take some of his own toys into nursery in order to give him something to come back down to as such which we did - however when my wife collected him from nursery and asked about the toys, they said they hadnt had time to get them out for him!!!! an absolute mickey take

in 2 months time we have to submit the forms for his first year in primary education and we want him to be in mainstream ed, not in a specialist school, but we have not an absolute clue as to where we go from here.. we have a complete lack of faith in the system, in those who are supposed to be caring and looking out for our child, and more importantly, in what the hell we are able to do.....

in my own mind i possibly think the diagnosis is wrong, that the blood test results were wrong and that he falls within the autistic spectrum.....

in short we have lost all faith in everything anyone hads tried to do for our little charmer, and really do not know where we go next

anyone with any ideas, avenues for help would instantly become our bestest buddies... we are finding it an incredibly lonely place at the mo and any stories, links etc that could perk us and our darling child up would be gretafully accepted

(sorry about the length of this, but there is a lot of pent up frustration within this house at the mo......)

Parents
  • Hi

    I can empathise with how you feel.  Although my son did not have the speech delays to such an extent he did have the tantrums which were full on and could last 2 hours which also resulted in many disapproving looks etc. the bad parent label.  It is very frustrating, tiring and draining and I think you and your wife must be doing a pretty amazing job just holding it together and particularly not letting your frustrations turn on each other, which is easily done in tense times.

    You are in touch with the various agencies and I would advise you need to keep at them.  He shouts loudest....but politely and very assertively will get results.   Never as quickly as we would like however. I dedicate a huge amount of my time to communicating with the various agencies to help us achieve small steps towards where we want to be to give our son a future and the rest of the family.  Tell them how hard and difficult things are, warts and all.

    I would say it is time to get tough with the nursery, in writing, pointing out he has a diagnosed disability and his needs should be met by law.  Can you meet to go through his needs to discuss what is going well and what needs to be addressed and how.  Encourage their support whilst you have his needs re-assessed and point out that as they will know, it is his needs that are important to acknowledge and support, rather than the label that results.  It is important they look at the source of the behaviour that results in his outbursts i.e. tiredness, hunger, teasing, misunderstanding play, taking his toy etc.  Do they keep a record of incidents to show any patterns in the environment or timing i.e. just before lunch etc.

    It is tiring but the only way to get it dealt with is to read up the nursery policies, the law and go in fully informed and take some control.

    Hope this helps, it is tough but I am sure will get better once the agencies do what is required of them.  The NAS are a great source of support on their helpline too.

    Keep your chin up, you are doing your best

    Good luck

     

Reply
  • Hi

    I can empathise with how you feel.  Although my son did not have the speech delays to such an extent he did have the tantrums which were full on and could last 2 hours which also resulted in many disapproving looks etc. the bad parent label.  It is very frustrating, tiring and draining and I think you and your wife must be doing a pretty amazing job just holding it together and particularly not letting your frustrations turn on each other, which is easily done in tense times.

    You are in touch with the various agencies and I would advise you need to keep at them.  He shouts loudest....but politely and very assertively will get results.   Never as quickly as we would like however. I dedicate a huge amount of my time to communicating with the various agencies to help us achieve small steps towards where we want to be to give our son a future and the rest of the family.  Tell them how hard and difficult things are, warts and all.

    I would say it is time to get tough with the nursery, in writing, pointing out he has a diagnosed disability and his needs should be met by law.  Can you meet to go through his needs to discuss what is going well and what needs to be addressed and how.  Encourage their support whilst you have his needs re-assessed and point out that as they will know, it is his needs that are important to acknowledge and support, rather than the label that results.  It is important they look at the source of the behaviour that results in his outbursts i.e. tiredness, hunger, teasing, misunderstanding play, taking his toy etc.  Do they keep a record of incidents to show any patterns in the environment or timing i.e. just before lunch etc.

    It is tiring but the only way to get it dealt with is to read up the nursery policies, the law and go in fully informed and take some control.

    Hope this helps, it is tough but I am sure will get better once the agencies do what is required of them.  The NAS are a great source of support on their helpline too.

    Keep your chin up, you are doing your best

    Good luck

     

Children
No Data