New to this and struggling already :(

[Aidan's Mummy]

I have a 19 month old son who has struggled to meet his milestones since birth. He has been under a consultant for a number os months now and during the last visit the consultant said he is behind with his speech and social development. He says he is showing some Autistic tendancies but due to his age he cannot give a diagnosis. We have done an action plan which is

• Refferal for a hearing test (Just incase it is his hearing)
• Refferal to a geneticist (As my OH's sister has suspected noonans syndrom and his mum is the carrier of the gene that causes it)
• Refferal to speech and langauge
• Refferal to portage

So we are waiting for all these agencies to begin engaging with Oliver. But recently his behavior has been increasingly difficult to handle. He headbutts and slaps him self if he becomes upset. We recently went to Milton Keynes to visit family and because his routine was disrupted his was just a nightmare. He would have regular meltdowns, lash out, scream for ages and If I go to pick him up he will begin to hit, slap, kick and bite me. It got to a point where I just sat and cried Once he goes into a meltdown he is so difficult to calm down. If I touch him he freaks out even more but if I leave him I am afraid he will hurt himself as he begins headbutting doors and slapping himself. How do I handle this? This is so new to me and I am just desperate to know how to deal with him. It sounds awful but I honestly don't know how I am going to handle this for the next few months let alone years. I just don't know what to do or say to calm him. The only thing that seems to work is music but you have to get him reasonably calm for him to acknowledge it's even playing. I want to help my little boy but I just don't know how x

 

[AP]

You need to go back to the doctor and explain his behaviour honey. Whether he is diagnosed or not right now it doesn't mean you can't gain access to support.

Please don't panic about the future. Once you know more about the bigger picture and the referrals come through, you will learn so much about how to handle Oliver when he has these meltdowns, portage will be of great help and together you can figure out tricks on how to help him.

 

[Aidan's Mummy]

Our next appointment is feb Everything just takes so long. x

 

[sam2eb]

Oh bless you It is all very overwhelming in the beginning.

When he's lashing out have you tried cuddling him really tightly. When my son was smaller I used to wrap him in a big blanket and hold him, he loved the pressure.

 

[Aidan's Mummy]

No I haven't tried that I will give it a go thank you x

 

[sethsmummy]

Hey hun sending you big hugs!

my son was a headbutter too! Thankfully he stopped that around age 2. The only way I could stop him was to hold him then always explained it was ouchie when hed calmed down. He disnt understand but I felt better knowing id tried to explain it. He is now a slapper, theres nothing to do really bar tell him no thank you. He sometimes stops and other times carries on....the best thing for us is distraction. If your sons acting out then hes probably over stimulated and struggling to cope or his routine has been changed.... does he have a favourite toy? When this happens for seth we get him to play woth his cars....these are his "calm" thing... nobody can touch them bar him or he gets aggresive if hes in that kind of mood but he will play quietly by himself then come back through to the main room when hes ready and is always calmer. He also had a hat which goes everywhere with him, it helps him feel safe and he is much better behaved with it...does you son have anything like that that hes attached to so he always feels he has control of something.

it gets easier hun it really does. You begin to learn their triggers and can sometimes stop them before they start and you will find ways to help him cope. Once the help all starts it will ease the pressure a bit too. Your really lucky to have them looking into it so young... we had to fight for it since seth was 1 and it was only the end of last ear when things actually started moving and people took my cocerns seriously despite seth having people involved with him from birth.

Anothwr thing that might help...lots of excercise for him... I find that if seths had a chance for a good run around hes much more co operative. Whereas if hes been stuck in all day his behaviour gets worse. Oh and also if you know something is going to happen that day which is different to usual tell him at the start of the day so he knows something different is going to happen. This can sometimes help. Xxx

 

[Peanut78]

Hi hun, sorry you're struggling As AP said go back to your doctor and explain - this way you may be able to access more tailored support sooner.

We aren't dealing with the same issues, but have been through enough OT in the last years to have learnt a thing or two about various techniques and what they are applied for. Have a look at youtube for calming techniques such as compression.

 

[Aidan's Mummy]

Hey hun sending you big hugs!

my son was a headbutter too! Thankfully he stopped that around age 2. The only way I could stop him was to hold him then always explained it was ouchie when hed calmed down. He disnt understand but I felt better knowing id tried to explain it. He is now a slapper, theres nothing to do really bar tell him no thank you. He sometimes stops and other times carries on....the best thing for us is distraction. If your sons acting out then hes probably over stimulated and struggling to cope or his routine has been changed.... does he have a favourite toy? When this happens for seth we get him to play woth his cars....these are his "calm" thing... nobody can touch them bar him or he gets aggresive if hes in that kind of mood but he will play quietly by himself then come back through to the main room when hes ready and is always calmer. He also had a hat which goes everywhere with him, it helps him feel safe and he is much better behaved with it...does you son have anything like that that hes attached to so he always feels he has control of something.

it gets easier hun it really does. You begin to learn their triggers and can sometimes stop them before they start and you will find ways to help him cope. Once the help all starts it will ease the pressure a bit too. Your really lucky to have them looking into it so young... we had to fight for it since seth was 1 and it was only the end of last ear when things actually started moving and people took my cocerns seriously despite seth having people involved with him from birth.

Anothwr thing that might help...lots of exercise for him... I find that if seths had a chance for a good run around hes much more co operative. Whereas if hes been stuck in all day his behaviour gets worse. Oh and also if you know something is going to happen that day which is different to usual tell him at the start of the day so he knows something different is going to happen. This can sometimes help. Xxx

He has a favorite blanket and he loves his musical light up toy. So do I bring them to him if he is having a meltdown. Do I ust give them to him or do I take them to and explain he can sit quietly with them until he feels read to come to me? Also he likes going into small corners, so shall I leave them in the corner he goes to all the time and let him go there? I thin the hardest part at the moment is seeing him suffering and knowing there is no 'cure' so to speak x

 

[Aidan's Mummy]

Thank you to ou all. All our advice and support is so much help x

 

[mummy2o]

My son is 6 and rarely has meltdowns as its not in his nature, but he can if he wants both sweets in the shop or sometimes if he doesn't want to stop what he's doing. He got a new favourite toy for Christmas which lights up and plays music, so if at home we press it and it lights up and it calms him down no end. It kind just a distraction. I don't know where you are, but if your in the UK and remember the advert were the boy and mum where going shopping and the boy wanted the crisps and the mum said no and he was about to have a tantrum so the mum had one first, if you do something like that it shocks there system so you can break it up before one happens. Or you can just let him scream on the floor in the middle of Sainsburys like I do and have everyone stare at you and tell you, your an awful mum. Its personally none of their business so I either tell them he has autism or that I'm not that mum who will let my kid have every sweet in the shop just because he wants it.

I think the most important thing for a parent with a child with special needs, specially if they can't see the needs, is to don't give a flying monkeys to what everyone else things. People can be so judgemental at times, its a bit like the whole pregnancy thing again, that everyone has suddenly got a right to tell you what to do. In either case none is right. I remember taking DS to a soft play place and this woman doing respite told me off as my son was having a meltdown disturbing the child she was caring for, so I just told her how is my disabled son any different from the one she's currently caring for. She soon shut up.

Another important thing is to remember the good days not the bad. Every child has good and bad days, regardless if they are disabled or not. My son can be an amazing boy like yesterday and he got 6 smiley faces at school, followed my excellent horse riding. Then at times I just feel like sitting in the corner crying as he's having a bad day and he's having a meltdown as he doesn't want to get off the bus and causing a big scene (he loves buses so try and use them when possible instead of the car for a treat) Your doing your best and he loves you regardless, although he has a funny way of showing it.

 

[sequeena]

Hey hun I want to give you hugs, my son is so similar to yours We are further down the line from you, we're just starting the genetics journey. Thomas has a Portage worker, speech therapist and is due to see audiology again on the 21st. Of course as you say it takes a while and we've been on this journey officially since January 2013. I wish I could give you advice but I find myself despairing more and more often with his behaviour. He won't even eat properly because he's gone off everything and when I try to figure out what he wants nothing is good enough

 

[Aidan's Mummy]

Hey hun I want to give you hugs, my son is so similar to yours We are further down the line from you, we're just starting the genetics journey. Thomas has a Portage worker, speech therapist and is due to see audiology again on the 21st. Of course as you say it takes a while and we've been on this journey officially since January 2013. I wish I could give you advice but I find myself despairing more and more often with his behaviour. He won't even eat properly because he's gone off everything and when I try to figure out what he wants nothing is good enough

huge Have the done any genetic tests yet? What do they entail. I hope you get answers soon too x

 

[sequeena]

No we've only had the initial blood test through the paediatrician who will then send us onto the geneticist in about 4 months time. I was meant to get a pee sample from him too but i cannot for the life of me get one out of him!