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Haze

I have given in

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I feel so ###### i am so tired i have a 5yr who is going through a diagnosis of adhd and aspies and we have noticed a major change in him now he's getting older and mainstream school and its so hard. We have no family as they live away and our parents have died, his consultant from the age 2 said ill wait till hes older as it could be toddler issues OMG now seeing him there is no way she can say he's ok. We love him madly but get so frustrated when he's beating the hell out of us and throwing everything in sheer frustration and as his mummy and daddy we cant get through its heart breaking to see him so mad over the slightest thing. This weekend we did a easter ball with national trust and one minute ok then shouting and wailing and things get thrown and fists fly. Me his mummy iam so heart broken i have lost my faith i dont know how to get through to him or help i cry in sheer anger why. The change can be over laces not tied right, blue everything almost has to have blue in it, sights and sounds, texture and people it is like having a bomb with the pin pulled you never know when he's going to blow. We have no support for his behaviour and now his older sis as been excluded from her friends due to his outburst's. School that is another headache until now i never knew how frustrated as a parent you get with the system. How do you manage your little ones

 

Hazexx :fight:

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Hi Haze my son Glen was just like your son at his age. It doesn't get any better I'm afraid, well it didn't for us anyway. As they get older they get stronger. Glen used to hit himself on his head with a great deal of force, he also hit out at me in particular as I was the 'closest' person to him I guess. Sadly last year when Glen was 17 I made a very difficult decision to have Glen placed in a special needs care home. We just couldn't 'manage' him at home full time any longer. Glen is still there now and is making good progress, he is much less aggressive, has fewer outbursts which is great. The staff are fantastic with him. He comes home for the weekend every 3 weeks, and we can see the improvement in him. He smiles and giggles at home which is so lovely to see.

 

You really need to get social services involved. Glen was allocated a social worker who was brilliant, she got Glen overnight respite: 48 nights a year and also told us of a special needs club on Saturdays, which Glen attended. You also need to get your local CAMHS involved, the child psychologist and child psychiatrist and your G.P. You must be firm and keep asking for help otherwise you will just be left to cope with your son on your own, if you don't ask you don't get! Your son may need some type of medication to help lesson his aggression. Glen went on medication it does help but doesn't cure obviously as there is no cure sadly for autism.

 

Do let me know how you get on. :-)

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Hi

 

Best advice I can give is to persist. Don't be told let's wait and see. We hear lots and lots about early intervention (how important it is), and so if kiddo does have an ASD, is losing out on support, etc due to the absence of a diagnosis if that's what kiddo has. Certainly in my experience, I was actually told that I was a stressed out first time mum that needed to cut my working hours down. I was furious because my heart and head told me something wasn't right. It was so much easier for the blame to be put on me or constant delays or excuses. Sure, healthcare professionals have to get the whole picture, but not only does that include scrutinising parents parenting styles, but it also involves observing the child over a period of time in a variety of settings. That process doesn't necessarily have to take years! My son was diagnosed at 4.5, but things only started happening after I expressed how concerned I was that we were being passed from pillar to post (I had 19 reports and seen a variety of professionals - seemed no one was prepared to say definitively what was wrong). I'm not suggesting parents stamp their feet and say 'hey my kid's got X, Y Z), but I think everyone has a right to be treated fairly with proper investigation over a reasonable (not prolonged) period of time. Difficulty is that often investigation requires a multi agency effort and depending on how kiddo presents within the various settings can give a mixed picture, however, from the age of 3 onwards things can start to become more and more obvious (certainly in nursery, kids start to learn how to share, social skills, etc, etc and so issues start to show). I remember being at breaking point and it sounds like you've reached the same point - it's worth telling your GP how difficult things are and asking again for a referral).

 

Best wishes.

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(talking as a son) (i have aspergers but the point translates with adhd)

 

first of all never give in no matter what. if my mother gave up on me i would probably not be here. there was no complicated approach on my mothers part, just good old fashioned mothering and never giving in. be strong, be soild, be brave. and your son will pick up on this. i speak from memory, when i saw my mother at her strongest i felt secure and able to talk to her about what was troubling me, instead of breaking doors and punching holes in the wall. i lashed out when i couldnt explain what i was feeling inside and when i saw my mother at her weakest, i felt helpless and reacted in the only way i knew how, its the same when a baby cries becuse its hungry or thirsty, it cant explain its self so it cries, it was simular with me. your son needs a soild foundation of routine, and a strong family backing him up, its not easy but having a child with a-s adhd or asd but it can be extremally rewarding in the long run when you see what they overcome and achieve.

 

i quite often run my mouth on here about how great i am and how superior i am and how indipendent i am, how i dont need no one, but between you and me i would never of made it this far and have so much belief in myself if my mother threw the towel in.

 

stick it out now and in 20 years you,ll have a son thats unstopable in his success. it might even sooner.

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Hello all

 

we have been away recharge thank you for replying it is great to know im not alone to AS Warrior thank you you made relise he has only his mum and dad and we have to dig deep and carry on to jeannea we have been offered ritalyin but i refused i love my sons personality he his when not in fire mode truly cute and so intelligent the words he splurts out are outstanding.To cmuir and all please i ask you not to stop replying for what im going to say because as i mum of two i knew my youngest was different something just wasn't right i knew and because i pesterd the g.p the social services got involved and silenced me they said until the consultant says there is a diagnosis then no parent can assume there child is medical different. All allegations were dropped and no apologie given but it as left me espeacilly scared iam scared to death to ask for help hence why iam so tired he as got an appointment coming up as he got a slap off the neighbours kiddies police are involved so i cant say much. So we shall see if his consultant still thinks hes a youngester like any other. He gets into trouble bless due to mis reading social and emotional cues. Aaron my youngest is back at school this week and all over the place for us were used to it for others they look at us and run

 

hazexx

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Hi Haze it is nice to hear from you. I'm sorry to hear about the bad experiences you had with social services in the past I can understand how you wouldn't trust them again it is such a shame. You shouldn't struggle on without some help. It will be interesting to see what the consultant says so good luck for that and please keep us informed. It is not easy being a parent especially when we are faced with all sorts of things but we have to be there for our kids and get them help if they need it, you have to keep fighting I'm afraid. Thinking of you (( ))

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Do you have an appointment soon with the consultant about a diagnosis? Is this consultant experienced in diagnosing children with ASD or ADHD? Have you been referred to a Speech and Language Therapist?

 

If the answer is no, then go back to your GP and tell them how bad things have become, and ask them to refer you again to a multi discliplinary team that has experience in diagnosing children with an ASD and ADHD.

 

From now, keep a dairy and write down every incident and what your son says and does and what you think triggers these outbursts [i know that often there is no obvious cause - and that is useful to know too - that he gets extremely upset for no apparent reason and cannot tell you what has upset him], and detail how extreme these upsets are and how long they last for.

 

I think many of us can identify with our children appearing to get overally upset/emotional over things and not being able to distract them or console them. Rather like a hurricane that you are just waiting to pass!

 

At those times, I used to say to my son "I can see that you are very angry/upset about x, and you need to calm down". I would take him to his bedroom and try to distract him and as he got older I would leave him to try to calm down alone. Sometimes being in the same room can make you a target for the aggression and frustration. But taking him to his bedroom should not be as a punishment. It is a place he goes to to calm down.

 

He probably likes the colour blue because he associates it with something good/positive that he has experienced. But I wonder if the 'blue' option may sometimes upset him IF it is not the choice he really wants. I don't know if that makes sense. But if he always chooses blue because he is trying to find some kind of predicatable outcome - but sometimes the blue choice is not what he expected??

 

There is also a condition called Synesthesia, which is where sensory stimulation is experienced as colours. So you can see, hear and touch things and an associated colour is experienced by the person. So some music may sound yellow, or green, or blue to them etc.

 

Or, as I say, the choice of colour maybe due to him having a rigid routine of only blue because he has linked blue to good outcomes.

 

I know he is young at 5 for medication. And I too was not in favour of medication. But my son started on medication at age 11.

 

Also his school should be doing something. Have you spoken with the Parent Partnership at your local authority? They are not completely independent of the LA, becasue the LA is their employer, but they are there to give advice and support to parents - which includes attending school meetings about your son.

 

You need to get a copy of the SEN Code of Practice, which you can download from the top of the Education Form under Educational Publications.

 

When a child has SEN the school is supposed to identify those needs and provide support. So a child would start on school action, and then move onto School Action Plus if the support being provided was not proving effective. As your child is suspected of having an ASD and ADHD, I think you have good cause to ask the school SENCO to put him onto School Action Plus, and for them to invite the Educational Psychologist and the Speech and Language Therapist into school to observe and assess him.

 

Are school saying they have any concerns?

 

School have budgets for EP and SALT time, so they should use them.

 

At School Action Plus the child should be seen by the Educational Psychologist and Speech and Language Therapist. They should identify areas of need [and get that in writing]. That would generate an Individual Education Plan that would have about 3 targets on it each term. These targets will be related to his areas of difficulty and they should be SMART [specific, measurable, achieveable, relevent and timed]. The PP should know about SMART targets for IEPs, and the PP can attend IEP meetings with you.

 

You need IEPs because that is a way of measuring if his difficulties are being addressed, and if the support and help being provided is effective. It it is not effective and progress is not being made, then you can ask the Local Authority to carry out an assessment for a Statement. You need two IEPs [which equates to 6 months] before you ask for such an assessment.

 

Talk first with his class teacher to see if they do have any issues at all. Then speak with the PP, and read through the relevent sections of the SEN Code of Practice. You will find that special educational needs is not JUST about academic ability. It also covers speech and language/social communication, emotional/behavioural difficulties, sensory issues, physical difficulties, specific learning difficulties etc.

 

Arrange a meeting with the school SENCO and ask the PP to attend for support and to take minutes of the meeting. Ask the school if they have concerns, if they are supporting him and if so how many hours are being used. Ask them to move him onto School Action Plus and to seek advice from outside professionals [EP and SALT].

 

You don't need a diagnosis for this to happen, but it helps. So make sure you get an appointment back with the consultant and go with your diary of events and explain how things have deteriorated significantly and that he is not coping in school and that he needs a diagnosis for the relevent professionals to become involved and provide support and help for him in school.

 

If the consultant again tries to delay a diagnosis, ask them to refer you to Clinical Psychology and a Speech and Language Therapist so that they can assess him too for their opinions.

 

Make a point of saying to the consultant that "If our son is on the spectrum and has ADHD he is not going to grow out of it and all evidence suggests that the sooner professional input and therapy is received the better the prognosis for the child. He has deteriorated significantly and is vulnerable and in danger of exclusion."

 

Regarding your daughters friend. Was he also at the house? If so, you will have to allow your daughter to go on her own to her friends house. Drop her off and pick her up. Explain to these parents that your son maybe on the autistic spectrum and may also have ADHD [not that this is an excuse for bad behaviour - but these disorders will make it very difficult for him to cope at times].

 

You need to dig your heels in and say your son needs a diagnosis.

 

You can highlight the part in the SEN Code of Practice which states that every need should be identified. How can it be identified if he is not diagnosed? Without a medical diagnosis it makes it much harder for other professionals to identify what the problem is.

Edited by Sally44

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Hi Sally

 

Before aaron went to mainstream he did have ieps as they recognised he struggled socialy and emotionaly and was doing well now in reception mainstream it as gone down hill i stand there some days and look at him and think what the hell have been beemed up. He his most defiant not handling school we think it is because there always changing the class around and he hates change and is being forced to sit and learn and again hates it we never dothis at home hence the clash. When he his at home we allow learning time then break then learning , when it comes to play with others we show him share and show by visual cues how upset people get if he thumps them or wrecks the whole game. The school clearly have no idea what so ever about autisim it is ok saying im a teacher but autisim is different they see evrything different hence learn different and the teacher needs to operate two systems one for the class and the autistis child. We are in the process of applying for a place at main stream school that as a inclusive disability eduaction programe so able bodied and disabled children learn side by side learning of one another.

 

Hazexx

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Hi hazel, I'm pleased to hear you are in the process of applying for a place in a school with a disability programme, I do hope you get the place and it works out for your son.

 

How have things been this afternoon? Hope you get chance to have some 'you time' this evening. :-))

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his chronological age is 5 but shave about a third off and he is about 18 months/2 years,particularly if he has delayed speech understandin. you will have to teach him the things you teach them when they are toddlers and with langauge and communication he can understand.With social stories etc. Its a hard time for you now,but with constant support there is a light at the end of the tunnel.It will take time and patience. You can teach them boundarys they do learn. The anger is usually as you pointed out frustration and anxietys at being in social settings and not understanding whats going on and why. Its like being in another country and not understanding the language,the culture or the social ettiquette of that country. Scary stuff for him and you as he acts up as a result.

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OMG sesley

 

you are so right i never thought of it like that and now thinking that i can see him in whole new light so ill keep you updated as for his new school it is 2yr waiting list but as we have the police involved after he got a beating of the kiddies next door we should skip that i pray, He his sleeping at the mo we have learned the tele at bedtime is the way to relax him. He his years ahead in maths but not literacy but we teach him total opposite to school he knows what his coming next we allow him to break and we know his triggers they dont and wont allow us to teach hence the move.

 

Hazexx

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Are you saying he had IEPs in nursery?

If so, these should have continued when he started reception.

 

I think you need to speak with your local authority Parent Partnership for them to give you advice and support. They can come with you to any meetings in school.

 

I would suggest a meeting with the school SENCO and you and PP.

 

Also phone the LA and ask for the contact details of their autism advisory teacher. She will be located in the edcuational psychology or specialist teaching services. Talk to her and ask her to come and observe your son. She may need the school to invite her, but you can ask them to do that at the meeting you arrange with the SENCO.

 

The point is that he should still be on school action plus with IEPs, and the school should have the EP and SALT and Autism Advisory Teacher involved. Get support from the PP to achieve this, and put your requests in writing to the school [after you've had the meeting]. And ask the PP to take notes of the meeting so you know what has been discussed and what has been agreed, and who is going to do it.

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another good thing to do is bedtime reading,whatever his favourite book,comic, spend time reading and point out the pictures with the stories,make it fun. get him to express his thoughts at the pictures, reading books is a brilliant soothing bonding time for him and you.If its Thomas with facial expressions even better, as Thomas the tank engine is a great way for them to learn what happy,sad and angry looks like.

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