Autism and ADHD in 4 year grand daughter

[AutismSGB]

At out wits end with our 4 year old daughter. She is an adorable wee thing but has been diagnosed with Autism. However, it's her behaviour that is our main concern and no one will listen. From not sleeping, to perpetual screaming, destruction, eating every kind of non food, e.g. her car seat, foam, crayons ( and swallowing ). we just can't get a minute to breathe! Today she has been awake since 4.45am, has no intention of having a nap, has cut her fringe off, eaten a felt tip pen ( which she used on the walls and her body beforehand ). We barely take our eyes off her for a second yet she seems to find time and find the often up very high confiscations such as felt tips, scissors etc. Her older sisters are also at their wits end. My daughter ( I'm Nana) just shouts now and can't seem to stay calm and that worries me too. Any advice?

[hspread]

I wish there was something I could say to help but I am not in that situation, although my auntie has a son with autism he is now 23, if I recall correctly he was somewhat similar to how you describe your grand daughter, my aunt had a lot of help though as are family is very large and everyone gave up time to give her a break, your daughter is probably more frustrated with herself then her child as she doesn't no what to do and is probably worried about the future, my only suggestion would be speaking to a GP for advice there must be something they can do or refer you to someone who can help, or maybe the child's health visitor my be able to advise further, sorry I have been no real help but I do hope someone can help as it sounds like your all having a terrible time of it right now, good luck

[storm-568]

Hello. I am n expert on this situation but it sounds so difficult for everyone. Some thoughts:

1) Does your HV understand the situation ? If not do inform them and ask for urgent specialist help. If you think they know but don't understand the full impact ask them to do a home visit so they can see the problem first hand.

2) Contact the National Autistic Society for help and advice -- since she has the diagnosis of autism-- I believe it is often associated with ADHD so they will be used to that and will have lots of information and advice to offer.

3) Does she have any specialist nursery provision--- if not she should have and I think this should be free. You may need a Psychologist's report to get this and the Health Visitor/GP will arrange this. You all need some respite from this !

4)A psychologist will also be needed to do an assessment as to what will happen to her re schooling at age 5. The specialist psychologist can also try to help you all to manage and control her behaviour a bit more now .This assessment should be done soon so that a plan is in place both for now and age 5. (HV/GP as above.)

5) Discuss with the Health Visitor how soon you can apply for Disability Living Allowance for her and try to ensure you get the highest rate-- usually it is aged 5 but she could qualify now as her behaviour is so extreme, If you apply and are turned down just apply again--add more information- I have been told that people often get it on 2nd application-- this gives you money to support her needs and although money doesn't help the emotional aspects it's still important eg if you can go out with her, you may need to take a taxi rather than a bus because of her behaviour.

6) Social Services/ The local Learning Disability Nursing team may be able to help-- discuss with your HV/GP. eg Social Services may be able to offer some respite care whilst everyone takes a breather !

7) If she has not been seen recently at the hospital/centre where she received the diagnosis-- you could ask the HV/ GP for an urgent review- the description you gave of her behaviour was very clear-- make sure they see it as clearly !

8) You say no-one will listen-- you could try videoing her behaviour on a "typical" day on your phone- with the parents' consent-- or the parents could do this and show it to them--( you can delete the video when they have seen it) or ask them to come and assess her at home. Keep a diary of events for a couple of days to show them.

I hope that you all get some help very soon !

[storm-568 in reply to storm-568]

I am NOT an expert on these problems !!

[roxannacar in reply to storm-568]

From your advice i would say you are!

[hspread in reply to storm-568]

I think that was very good advice

[mamorieofcham]

Hello

I have 2 autistic nephews one with classic autism and the other one is what we call pdd-nos. What i'm about to say will not be conforting. You (nan) have to brace yourself because she is bound to get wost . She needs 24 hours care that means you do not let her out of your sit.

The biggest problem with ppd-nos is the violence and the destruction. She needs someone to look out for her as she can get injure someone or herself. She needs to get into behaviour therapy and speech therapy (ppd-nos is usually accompanied with speech problems.)

She will need a psychiatrist and a psychologist . One will prescribe the medication that will help with her nerves and the other one will help with her behaviour.

Contact socail services because you will need help with raising her (support workers).

It is not all bad but you have to prepare yourselves for a long and difficult journey.

It is not comforting but theses are things I wish someone told us. We were unprepared.

Hope it help

[mamorieofcham]

One more thing learn to be passive, the more you get upset the more she will do that. She will pick up on your vibe or emotional state.

[Meowthmum]

Hi,

This is very familiar behaviour to what I went through with my daughter growing up. She has aspergers and it appears quite mild now cos she's now 14 but we went through the hair cutting off ( she somehow managed to do her younger sister too lol), taking stuff apart, drawing on stuff, tantrums.

I'm a single mum and it can be very testing at times but the health professionals ( psych and CAHMS) gave us some very good coping strategies and worked with the school too.

Like I say, she's 14 now and looking to get awesome GCSE results in a couple of years. She has trouble making friends but I'm not worried for the first time ever.

Patience is definitely key as they can't help their behaviour.

Good luck xx

[Dad101]

Patience, love, and knowledge. The more you understand the easier it will be to accept the behaviour as normal for her. Research the conditions, join forums where you will find other concerned parents, and accept that you have a tough road ahead of you. Although your not alone and by contacting others in your position will help quell the alienation you feel when dealing with a child who has difficulties. Most importantly she needs your love and support. She hasn't asked to be like this and look at it this way. If your finding it tough as a fully developed adult imagine how it must be for her. Empathise with her and it will get easier!