Struggling to cope!

[susiemumof3]

Hi all,

I joined over a year ago when it was first suggested to me that my 9 year old was asd. We still do not have a diagnosis for him, despite numerous appointments with CDC and Camhs. We are waiting on the speech and language assessment and the Occupational Health. The reason for my post today though is because I am really struggling. He is the oldest of three and while he is generally playful and gentle with the youngest (2), he is violent, bullying and rude to my 6 year old. This morning they were arguing over the use of the laptop and the row culminated in him dragging my 6 year old backwards by his top and twisting it round so that it was near enough strangling him. My 6 year old was hysterical and has nasty red marks around his neck. Afterwards, my 9 year old was extremely apologetic, cried for well over an hour, and repeatedly said he was sorry and he didn't want his brother to die. At this point I had no idea how to react. The way he lashes out seems to be getting worse and worse and yet his school constantly tell me that I am making a fuss and they have no concerns over him whatsoever. The one person who was supporting me has now started to backtrack a little and is hinting that perhaps the was I have reacted to his behaviour in the past could have had a negative impact on the way he now behaves. In fact, the SENCO suggested I should take a parenting course! Now I don't claim to be perfect as a parent, but I do think I've done a pretty good job in most areas and have asked for advice from professionals on how to deal with situations since he was 2. I've even completed a parenting course and an NVQ in children's learning and development. Obviously we have no idea if we will even get a diagnosis, as the CDC seem to believe he has high anxiety levels and sensory processing difficulties. Camhs discharged him as at our fifth appointment, it was a good day and he was very calm and said he wasn't worried about anything anymore. Hmmm, this lasted less than a week!

I could go on all day about my experiences over the past year, but basically I just wanted to share and perhaps feel someone understands because at the moment I feel very alone and I don't know how to best support him. He is just so sad and full of self loathing! :-( Thanks for reading.

[Mandapanda]

Hi

 

It is difficult when behaviour becomes violent. It sounds to me, from my experience, that he is unable to cope with the extreme emotions he feels, for instance when someone else wants to do what he wants to do. 'Bad' behaviour in my experience is usually their way of demonstrating that they are unhappy, confused, frustrated, or of course angry, which is why they feel so awful about it later. The 6 year old is growing up and will probably want to do things big brother does, so you may need to set up some sort of timetable so everyone is clear about who can do what and when.

 

It's all too easy to blame the parents, but also sometimes they may have something of a point, they just don't explain that our reactions can be wrong because we are not aware of our child's difficulties or how they see the world, and if we can learn to understand them better we may understand that a different reaction may be appropriate. It's really hard, they expect us to be superhuman, keep calm and in control all the time, and think totally rationally when everyone is melting down around us!

 

Good luck.

[Suze]

When my son was doing stuff like this (when he was around the same age as your son)..I had to watch him like a hawk and the slightest hint of any upset I had to get in there and diffuse the situation , either by asking my other 2 to let him be and have quiet time , or by sending my son to his room with a reward for him when he was calmer and had chilled out etc.If the computer is something your kids argue over , it might be wise to lay down ground rules and have them pinned by the computer, limit time to 15 min or 30 min blocks each (done with a timer so they can see how much time they have used etc )..best of luck suze

[Kazzen161]

_{I agree with Mandapanda - now the 6 year old is old enough to want (and has the right to do) some of the same things that the eldest does, you will need to have rotas and routines to ensure there are not arguments. Tell your 6 year old (and your eldest) to come to you if there is a disagreement and not to get involved in fights with his brother - as they both get older that can become very dangerous. Make sure you do deal with any arguments (and fairly) if the chidlren do come to you. If there are arguments, do not leave them to fight it out - intervene and separate them, send them both to separate places to calm down. Children with AS do not usually have the control that similar aged NT children have, to stop when it gets out of hand or to adjust their power to suit their opponent - it takes some time to teach them to walk away and go to ask for help.}

[rufusrufus]

I can't really offer any advice, but I offer my support if that's any good :s

[justine1]

Hi

 

I have been in this situation a few times in the past,and agree with what others have said. Firstly you have to try and diffuse the situation before it esculates,you know your child best so I am sure you may see signs of anger,my son sucks in his cheeks then I know he is going to hurt someone so quickly take him off to his room or quiet area. Another thing is you have something to work with in that he was crying and apologised that is a good thing as he understands he done wrong,I am not so fortunate with that my son has to be forced to apologise.

 

What consequences does he get for his actions? Like sanctions,no telly or games etc. Also if the 6 year old has done something its a good idea to give them both a punnishment it has to be fair. After an incident wait for everyone to calm down and then discuss what happened and how everyone felt,prehaps you can make picture of happy,sad,angry etc (paper plates are good as faces) that your son can use to express himself. Teach him that when he feels angry he can take time out in his room or maybe place a beanbag/chair somewhere where he has a chill zone.

 

As for parenting classes most people who have had a dx for their child have had to do one or more of these,whilst it may appear silly they can be beneficial and if nothing else prove that you are doing things right,just from experience.

[susiemumof3]

Hi, thank you all for your replies. It's lovely to know there is support when we need it!

Back to school today and I am hoping that a routine again may help. However, he was in tears this morning going in. We had to visit the gp this week as he has been struggling to breathe most nights over the past week and we thought perhaps he had acid reflux or his asthma had returned. However, the gp advised that he is suffering with what appears to be panic attacks, most likely brought on by the anxiety of returning to school. One of the nights he was hysterical and demanded we take him to the hospital as there was something blocking his 'pipes'. Distraction eventually worked in the end but of course, that was the final straw.

 

Going back to the violent outbursts, avoiding situations where they begin bickering seems to be working. When he is on the computer he has the option to be completely alone, so that he is not disturbed. When his brother is on the computer (at a scheduled time agreed by all!) he has to leave his brother alone if asked. So far so good!

 

I will quite happily take courses to better understand my son but I would like to wait for a diagnosis first (if we ever get one) so that I can approach everything correctly. We seem to have been waiting forever and it's a constant fight with everyone for anything to happen. I first raised concerns four years ago with the school and 6 years ago with the health visitors. When I told the teacher today about the panic attacks so she would know what it was if one occurred, she told me not to worry and he's fine. I felt, yet again, patronised. Perhaps they believe that I'm the one having panic attacks and making him feel nervous about everything.

 

I wonder if you could clarify whether I should be concerned or not about him because I feel I am pushing and pushing and eyes are being rolled as I walk away.

1. Sensory difficulties

Loud noises (has improved but as a toddler couldn't even stand the hoover)

Clothing (labels, some seams, denim, jumpers, coats, emblems, school shoes)

hair washing

Cuddles (although he will occasionally come to me for comfort)

Tastes (Has improved immensely over the past few years but still won't mix foods and flavours)

 

2. Relationships

Friends (has one close friend and two other friends - they have maintained a friendship for 3 years but he will not play with anyone else and is quite possessive/jealous.

Family (can't relate to his dad but will converse quite happily with me, Argues with 6 year old - normal I know! but has good relationship with 2 year old brother. Doesn't show affection towards other family members)

Strangers (Will ignore a lot of people, even if spoken to directly. Has shouted at people for no reason other than they are strangers or he has heard them swearing or they looked at him funny)

 

3. School

Attainment (is excellent and he is advanced in most subjects and the school have no concerns academically)

attendance (He hates to go and I have had whole terms where he has to be forced into the classroom. This has been since reception and shows no signs of abating)

 

4. Emotions

Anxiety (This is probably his biggest problem. He suffers from high anxiety levels and cannot be reasoned with a lot of the time.Even as a three year old he was afraid to walk past trees in case the monkeys swung out and took him away. Not sure where this came from but it went on for years!)

Anger (a lot of the time he is frustrated and angry - mainly with himself. He hits himself in the face, pulls his hair and rolls about on the floor screaming. His rages can last for hours and drain him so much that he often has a terrible headache and goes to bed afterwards.

Happy (When he is playing or enjoying something he can be truly happy and he has a wonderful giggle. sometimes though he laughs and I can tell it's fake like he knows whatever it is is supposed to be funny but he's not sure why so he'll just pretend - if that makes any sense)

confidence (very low in self esteem)

 

5. Speech

Development (he had only a minor speech delay, but struggled to say some words)

Tone (When he reads aloud there is no expression just very flat although he does generally speak with expression. He quite often talks in a funny voice)

words (He will listen to things I have said and say it back to me repeatedly, sometimes inappropriately and he latches onto things I have said and just won't let it go. he developed his own words and would have full conversations with his baby brother in goobledegook.

 

Other things I could mention

He is really afraid of being told off, particularly at school and has had just one warning in 5 years

At playgroup he latched onto a child that was older than him who would hit, push and shout at him. Although staff tried to get him to play with someone else he would always follow this child. Eventually we moved playgroups.

He would play for hours and hours with the same few puzzles at around two years old, pulling them apart and fixing them again and again. He wouldn't talk during this time.

Dislikes going anywhere or being in the car. Once we actually get somewhere though, he loves it and tantrums about coming home, throwing himself to the floor.

 

I could actually go on for hours and hours. Unfortunately the school and health professionals have not seen the full picture so i am having to stand my ground all the time. Am I right to do this or are all the above to be expected in a nine year old.

I really value any feedback from any of you, and of course I know that they are not professional opinions.

 

anyway, thanks for reading. x

[smileyK]

Id say you are totally in yours & your son rights find the answers get investigated properly throughly you are doing what any parent would do in your situation which Is fight/ stand Childs corner when you know something isn't right doesn't add up exactly! You one who knows your child better that any professional out there I used to be scared of Hoover when younger still dislike the noise/ sound used cover my ears used react same with drills all of what you listed is common autism signs so I would say sooner looked into more the better for your son as if just left ALone nothing will be solved get improved just get worse! When I used to get anger rages ( meltdowns) I used get banging headache and have to go bed as was so tired/ drained don't give up my mum was called Overprotective by SENCO at juniors school and liar when trying seek assessment/official diagnosis for dyspraxia they paediatrician and SENCO both agreed didn't display hardly any signs of that condition but mum pushed and final assessment physical evidence showed it! Point taken! Your son needs you to fight his corner! The earlier the official diagnosis better the outcome of services support etc

[smileyK]

When he repeats things you have said that known as echolia which is often language issue linked with autism like being a polly parrot have you looked into autism signs on NAS website ? Be persistent keep going no matter what anyone professional says conclusion will be reached in the end! You will see! Keep going keep it up keep fighting!