Help please, advice, suggestions encouragement!

I have a very smart and loving 3 year old grandson who lives with me and his mom. He was born with hypertonia, and has been dx with sensory disorder. But there is something very seriously wrong with him. When he gets upset his temper esculates from 1 to 10 in a matter of minutes. When this happens there is no communicating with him, it is like a blind rage, let me describe his strength. He literally by hand tore drawers off of a solid wood dresser and split the bottom wood panels in half and was throwing the pieces against his door anod wall in his room. He has head butted my daughter he has thrown objects at my head at such a force he gave me a concussion. It's very hard to see this in written form, he is the most loving, smart boy but this other part of him is very unpredictable very violent strength beyond his age, i feel crazy trying to express the strength he has especially when these rages occur. I really hope someone on here can relate help guide us and just plain knowing someone out there is or has experienced simular situations will help a lot.....

5 Replies

  • Hello - I have a very smart and loving 6 year old grandson who was dx with autistic spectrum disorder aged 3 and I'm very familiar with those sudden, blind rages. I will write more later but just wanted to reassure you that you are not alone in experiencing this. Well done for putting it into words, not easy I know.

  • Thank you so very much for replying to my post! I look forward to hearing more from you! Your reply has eased my heart some knowing I am not alone while going through this with my grandso.....thank you thank you

  • Hello again. I'm so sorry I didn't get to write more earlier but it's been a busy week with a busier one to come, as the schools are now on their half-term break and I will be looking after my grandson most days. He is a treasure and delight to the family and we all would do anything for him of course, but we have learned to always be alert to these sudden meltdowns. I gave him a squeezy stress ball during one such incident - he calmly took it from me, put it in the rubbish bin, then threw my phone at the wall! His parents and I have been head-butted, kicked, bitten and had things thrown at us, but despite our cuts and bruises we can't bear to see him so frustrated and hurting inside. We just want to hug him to reassure him he is safe and loved but we can't - he hates to be touched unless he instigates it. Distraction often works (as long as you judge the right moment) but telling him to stop does not work as it only adds to the sensory overload he is already experiencing.

    The situation is improving. He automatically covers his ears when he hears police sirens etc and we forewarn him if we're using items such as electric mixers, cleaners, hair dryers and drills. He also seems able to block out all other noise when engrossed in his favourite dvd or tv programmes! The meltdowns are not as frequent but can be quite forceful - the strength in him at these times has to be seen to be believed. He has no road sense but at least has stopped suddenly sitting down in the middle of the road if he felt like it.

    Does he have support from any therapists etc? Do you and his mother get support? Although you may worry what his future will be, take pleasure from all he can do and encourage his interests. Let him know you are there for him and are proud of him.

    Best wishes, Emmy

  • hi Emmy

    I too have been busy, so don't ever be concerned that you can't answer back right away.

    I had started one response, I wasn't done with it, but I guess it was done with me lol, because it disappeared to somewhere and I haven't been able to find it.

    I so appreciate you sharing your experience and symptoms of your own grandson.

    every single thing you listed that your grandson does is identical to what my grandson Dean goes through.

    when he was born and the first time I held him he stiffened up like a board then he relaxed and went to sleep. I told the Dr and nurses what was happening and I was nothing more then an ignorant person regarding Dean.

    on his 24 hour check to be released to come home, his Dr gave her OK, but the nurses said no he had to go to the nicu for over night observation and then they started questioning my daughter about medicines she took during her pregnancy.

    the hospital staff labeled Dean as a "withdrawal baby" and started him on morphine. before they ever got the cord result back, which they didn't even put a stat on the cord results. so about a week and a half later the cord results c a me in.

    they tested him for every medication known to man plus some and of course it came back 100% clean.

    so then the hospital began to ween

    him off the morphine and placed on phenobarbital

    exactly one month from the day he was born he was able to come home.

    he was set up for pt, which he received for about two years it was his pt that said it seems to him that Dean has a sensory disorder and hypertonia. thats all that ever was said to us. then they gave him ot for about 6 months. the last six months he has had no treatment.

    since then. My daughter has said to me on various occasions what am I to do when he gets older, I won't be strong enough to hold him, and due to some of my own physical problems I can't help her.

    I told my daughter to find a pediatric Dr that also deals with behavior problems in children. which she has done so, they first ran allergey testing which he does have several allergies. but even treating the allegiies has done nothing for the melt down behavior.

    something is wrong with him

    nuerologically he was approved and is on ssi, so something obviously is bad enough for him to be placed on ssi.

    we, my daughter and I have received no information on how to handle Dean and have not received any support. is there support groups and if so does your child need to be diagnosed with something before parents or family can participate in a group? do you know of a group for support or some place to look into? beings we have no support i decided to seek information on my own that is why when I stumbled across this site I thought I would just give it a try.

    I am so glad I did, because just hearing everything you, your family, and your grandson goes through, helps me to not feel so crazy.

    from the sound of everything you described it is my grandson. I know what you mean about the unbelievable strength they have, Dean took a solid wood dresser broke every drawer front

    off of it then snapped the middle piece in half bare handed then procedded to hit the walls and door with it. there have been times we have had to risk going in to his room to remove everything that could cause potential harm to him and destruction to the room.

    we have been judged as not training him properly that he is spoiled and all he is going through are tempertantrums. that there is nothing wrong with him it's us.

    so your words your experiences has helped me a lot!

    is there any medication even used just as a when needed, for this disorder? or is it something our babies just have to endure?

    this has been a lengthy response I hope you don't mind, it's just that I have had no one to no pour my heart out to that understands what takes place.

    I truly a appreciate your sharing with me. thank you so very much.


  • Hello Hope

    For some reason you came into my mind today and I started wondering how you are all getting on. Have you been able to get any professional help or advice with regard to Dean? I know procedures are different in America and England so I can't recommend where to go and who to see. All I can do is be here to listen if you want to offload your frustration, anger, grief, whatever.

    My little chap is really trying hard to deal with life as he sees it, and is doing well. He is coping with mainstream school with a helper, although is behind his peers in ability. Routine is very important to him and any changes have to be introduced gradually. He has recently had a 'big boy' haircut, which was a major milestone. If you think about it, having a haircut is like going to the dentist - you sit in a chair and give control to someone else, who is usually standing behind you. It was actually his dentist that pointed this out. She is a specialist with children like him and really built a relationship over several visits before she ever got him to sit in the chair on his own.

    We take photos of any new person or place we will be seeing regularly so we can remind him of who and where we're going before the next appointment is due. Seeing the photos and talking about the trip in the familiar surroundings of home makes it a less stressful event for him (and us!).

    Take care of yourselves and write whenever you feel like it.


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