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Grandparenting

My poor daughter

(57 Posts)
Musicelf Wed 24-May-17 22:36:08

Hello fellow Grans, I'm not sure what I'm expecting, but I've just had a heart-rending email from my DD, who has an autistic 8-year old son as well as two other gorgeous children. DGS is adorable, sensitive and very bright, but his melt-downs are epic, and my poor DD cannot deal with them anymore. DGS has become far more aggressive when upset, hitting himself, her and anyone else, as well as throwing things, screaming and crying for hours. DD used to be able to control his melt-downs by holding him tightly until he calmed down, and I know he adores his mum.

Anyway, this email said that DD is struggling to cope, and that she's beginning to resent him for making things difficult for the other two children. DGD is nearly 14 and has little time for her brother, the other DGS is nearly 4 and knows exactly what buttons to press to wind his brother up.

My daughter said she would have gladly run away tonight if SiL had been home, but he was working. He has autism himself to a mild extent, and is no real help dealing with all the problems, although he is a lovely man who works very hard.

There is nothing I can say to my daughter, as I don't know how she can be helped. She's been through the hoops she has to go through to get help for DGS - who also has epilepsy - and I live 6 hours away, so can't help physically.

Does anyone have any ideas on what to do to help? It's a huge ask, as autism is such a huge spectrum. I needed to offload, as my DD does to me (and I'm so grateful she feels she can, as I couldn't with my mother). Thanks for reading.

BlueBelle Tue 27-Jun-17 23:50:42

Really feel for you I ve no real advice except as others have said, support of others in the same situation is so so helpful (just talking and moaning and getting it all off her chest with people with similar kids will be such a relief)
So glad you are visiting and can take some strain off even for a short while
I was wondering if the 4 year old could have a holiday with you ? Just a thought

And to the poster who says she hopes her grandson grows out of ADHD you don't grow out of 'different wiring' you have to learn to work with it and how to manage it Ritalin isn't always the best answer for the child it's a cosh to be honest so easier for the school, but is it for the child ? It's not a nice drug

nannynoo Tue 27-Jun-17 23:12:12

Please be careful about residential care as there are some horror stories out there , parents being told it was just for a few weeks or months and years later the child or young adult is still there as they were sectioned and the parents are powerless to remove them! sad

16 years later and some teens now adults are still in there and legally it is hard to remove them once they are sectioned plus many are hundreds of miles away from the family home and there is not an open door policy to see your child / loved one so a lot of what goes on is hidden

( there was a snippet about it on This Morning on BBC1 today ) and it is every Autism parents nightmare as you need the help , it is left till it gets to crisis stage then the 'help' turns out to be no help at all but a nightmare where the child or adult is made worse but there are some good community programs yet few and far between but some carer groups are pushing for more care / support / respite etc in the community not in these huge 'care homes' as the vulnerable can be open to mental and physical abuse which is the last thing they need in their already fragile state!

I feel there are some excellent charities out there which is where I will reach out for help if needed in the future as I find them more trustworthy as the authorities are on a budget and the cheapest 'care' certainly is not always the best , nor the support , but many of the charities are run by Autism parents etc themselves so they have a huge understanding on the type of support needed for families and I am so glad they are out there as my safety net if needed smile ( rather than council run residential care tbh , particularly the 'crisis care!!' :-( )

Thirdinline Fri 16-Jun-17 10:47:49

I have been in your DD's situation myself. DS2 has ASD, we got a good level of respite when he was 14, largely due to the issue of child protection for his younger brothers. Most of the things I would have recommended have already been mentioned. I would just like to add that the Challenging Behaviour Foundation is more than a Facebook page and gives excellent advice, DVDs on how to manage challenging behaviour that are free to parents etc. I'm away from home at the moment & can't check, but the email address starts cbf- hopefully this is enough for you to find them online! It does get better, DS2 is now 23 years old and calm, funny and loving 99% of the time. Best wishes to you and your daughter and congratulations for coping thus far. I will PM you as well.

hildajenniJ Wed 14-Jun-17 17:58:00

Today my DD had to deal with a massive meltdown in a store carpark in Glasgow. GS1 saw a pigeon die and wanted to take it somewhere and give it a burial. Needless to say, my DD didn't fancy carrying a dead, probably bacteria filled pigeon anywhere and told him no. Of course then my DD was all the awful things in the universe, a bad mother, etc. She had to frog march tall eight year old boy to the subway station, accompanied by two younger sons. The comments she had from strangers was less than encouragingly, and she swore at one man who criticized her parenting. She didn't want her son to bolt, as he would have done if not restrained. She got them home but the meltdown carried on for an hour and a half! I've just finished listening to the tale of woe, she needed a mum chat as she calls it.
They are all visiting us at the weekend, she is dreading the train journey with three boys with ASD's.

FarNorth Wed 14-Jun-17 16:31:37

Hullo nannynoo. I haven't seen you posting for a while and I had wondered how you were getting on.

You are doing wonderfully with your DGS, he has had a lot to cope with in his life and still does, of course.

I very much hope the course gives you good ideas for how to deal with the problems you and your DGS are having.

{{hugs}}

nannynoo Fri 09-Jun-17 18:21:56

I felt so happy when the punching etc stopped and then he reverted to scratching but that seems to have stopped and now we are left with pushing and hitting my hand but we are working on that now , it's ongoing wink lol

Oh and the decibel busting , ear popping high pitched screaming has escalated too lol

nannynoo Fri 09-Jun-17 18:13:16

I fully understand , am currently raising my 9 year old Grandson with Autism and his behaviours are getting worse in some ways but thankfully better in other ways but in general it is hard for him and therefore hard for me

I get fairly regular respite which helps keep me sane lol

Plus there is a Facebook group called 'The Challenging Behaviour Foundation' which gives advice and support and has some helpful articles

The social worker mentioned CAHMS but they are more mental health focused from what I understand and my Grandsons behaviour is more Autism based than emotional based although emotions do of course come into it so if I ever felt it got so bad I needed a referral I would go for it

There seems to be a huge lack of help out there though and we are just left to it , my daughter struggled and then finally turned to alcohol and therefore has her son removed

I am not sure how she would cope if he was returned but I was always on hand before as am only an hour away thankfully

It is HARD and she does need some support , is she a member of any local Autism groups? The thing is I can have a nice day out with my grandson and other carers if i want but it does not help the day to day struggles and I am on my own with him but I do my best every day to ensure he is as well and happy as possible but his latest thing is scratching my face but I think we have resolved it as he stops himself right before he does it now as with the punching me usually but he does still hit out and then feel bad sad

It sounds like the teenage years are difficult , at nearly 10 my Grandson is going through some huge changes by the day and feels like a 'pre teen' right now and it is tough but with all the right support in place your daughter may feel better

I always contact the school when I need support as well and they have been GREAT

It is emotionally and physically draining though and your daughter needs time to herself to recharge

Could you offer her any respite? Does she get direct payments from the local authority as this can be used to pay for respite care which makes a huge difference as it is the main thing which keeps me sane to be honest as I am not sure if I would indeed cope without it as I NEED something to look forward to ie my next break lol as on the bad days I count in my head how many more weeks until I get my respite break wink and it helps but I keep trying different things to find what helps with the meltdowns as different things work at different times but my main thing is remaining calm as he picks up on my anxiety xx

I hope you can work something out together and do remember that hopefully things will calm down once past the teenage stage and into adulthood but finding ways to offload the frustration & rage etc whilst not hurting themselves or anyone else is something I am working on myself too! x

( I am going on a course soon so I will see what they suggest on the course as it is called 'de-escalating anger and aggression' so it should be of some help hopefully!! )

flowers hugs btw flowers

Crafting Mon 29-May-17 20:08:12

musicelf please, please, please get your DD a copy of a book called "The reason I jump" (sorry, can't access the Internet at the moment to find out the author - got my copy from the library)

It is written by an autistic 13 year old. I know that each and every autistic child is different and this book is just written by one child but I found it gave me a real insight into many aspects displayed by my autustic GC. Will it help your DD cope, no BUT it explains so much about how the child is feeling that it might help her to understand how awful it is for him and how he doesn't mean to cause this upset. That in itself may help.

I cannot recommend this book enough. It made me sad in many ways to think how I may have let my DGC down when I thought DGC should exercise some control over feelings but came to think that there was so much going on that I wasn't aware of. It is a short easy to read book. No technical terms or long explanations just simple questions and answers. Just keep loving him musicelf

DIL1991 Mon 29-May-17 17:37:27

Sometimes the greatest help is to basically just be a source where she can vent. Allow her to vent about her frustrations. Once she gets it off her chest she will likely feel a lot better.

NemosMum Fri 26-May-17 21:27:16

There are many people who claim to treat and even cure autism. Not wishing to offend anyone, but please don't actually pay someone who claims to do so. Autism is a complex developmental disorder. If there was a cure, the National Autistic Society would be promoting it, and the NHS would be using it. I was a speech and language therapist and worked with many families living with autism. We ran (FREE) courses for parents to help them communicate effectively with their children and deal with behavioural issues. Parents need practical and emotional support and an understanding of this lifelong incurable condition. I would suggest OP contacts the National Autistic Society helpline if she is feeling at the end of her tether. She could also contact her GP and Social Services. Very best wishes; I hope the situation improves.

Lakegirl Fri 26-May-17 15:37:01

I would suggest that your DD contact Dr Lena Ohlson, herself diagnosed as autistic, who has done much research and a) believes that these children react as they do because they use more of their brain than most of us, are more sensitive and thus become overloaded and b) has found that mineral and other supplements can effect dramatic change in their behaviour. I have pasted below some of her comments, plus what she says about diet and here is a link to a YouTube vid of her: www.youtube.com/watch?v=ElJms6hmdwU
1) The new programs of humanity can be embodied in human labels, such as Attention Deficit Hyperactivity Disorder (ADHD), Asperger Syndrome (Asperger’s) and other forms of Autism and Dyslexia, conventionally believed to be the result of faulty genes, poor diet, vaccinations, poor parenting, and pollution, etc. Although some of these may be contributing factors, it cannot explain why these children are so dramatically different in terms of perception and behavior. Is it possible these apparent
dysfunctions are part of a new evolving human? Molecular biologist Dr. Lena Ohlson believes this is not a dysfunction, but they are fundamentally different, and
has coined the term ‘Letter People’. Dr. Ohlson believes she is a ‘letter person’. This understanding has been due to her research into the differences both as a scientist
and because of her own personal experiences. Dr. Ohlson explains that there are qualities these children/people have, which are not being understood because they
are fundamentally different.
2)I found some unique chemical differences: I observed the calculated levels of acetylcholine and dopamine in the brain are higher in letter people. Acetylcholine is formed from choline in the vitamin B family, and letter people need more choline (but also other vitamin B family members) because they use more of it. So that’s the simplicity behind the ‘cure’ for letter people: more of the vitamin B family and methylsulphonylmethane (MSM), to help in the enzymatic reactions in the brain and the formation of acetylcholine from choline. The positive effect comes a few days after the first intake; and if you stop taking the supplements, the first signs of imbalance (ADHD and so on) can be noticed after a few days, depending on how much stress you are exposed to.
Acetylcholine is also used by the body to calm down after stress and to regulate the bowels. That’s probably also one reason the letter people can be sensitive to milk products, gluten or additives in the food. Inflammation of the intestine, like IBS, ulcerous colitis and so on, are probably also seen more often in letter people because of the lack of choline. But this could easily be studied for verification. We know that normal people process one problem at a time on both sides of the brain, observed through brain-scanning experiments. Letter people show impairment in the communication between the brain halves, and thus use one side of the brain for solving the same problem. They say we are dysfunctional but I believe it is a way to free more space in the brain for solving more difficult tasks. Maybe at the same time (lots of the stress sensitive people I have scanned are problem-solvers and multi-taskers before they get their metabolic stress syndrome), a way that nature has supported us with a possibility to further brain development………..
How to Support the Letter Person with Diet
A short list I recommend a letter person to start with and the doses that have helped my family and me. (All doses are per day):In addition to healthy foods we take multivitamin and mineral supplements, and in addition to that we take:
Vitamin D3: 50, microgram
Vitamin C: 1-2grams
Sometimes Silica gel for the stomach and nervous system, and probiotic for the intestinal flora, thus promoting health.
For the Nervous System and the Brain (Running all the functions in the body, and therefore crucial)
Vitamin Bs in a complex: 25 mg each of B1, B2, B6, PABA, Inositol
50 mg each of B3, B5, Cholin
50 microgram of B12
25 microgram B15
150 microgram Biotin
200 micrograms Folic acid). In most vitamin Bs this is over the recommended daily intake, and we, in the family, have taken this daily for more than ten years with no side effects but becoming healthier.
Omega oil 3, 6, 9, in balance: We have used mostly a brand called Udo’s Choice, but also Omega 3 from fish.
MSM (methylsulfonylmethane). Start with a few grains and work your way up to the maximum dose of two teaspoons/day. Can be dissolved in fruit juice to taste better. Take this in the morning or during daytime, because it gives energy and might keep you awake in the night.
Anxiety Prevention: Valerian officinalis: between 200mg and 1200mg (The brand Neuroplant is really good).
Depression Prevention : Hypericum officinalis: between 600mg and 900mg.
Letter people have a lot of potential, but they are often put down at an early age because they meet more of a challenge when trying to learn how to drive and control their bodies (probably due to very many more nervous cells and faster transmission at some or all synapses between nerves). But the extended nervous system, in its turn, and if handled and trained properly, will give the brain (which also most certainly is a bit different to ‘normal’ people) a good portion of ‘extra curriculum’ exercise, and we end up problem solvers and big thinkers. The brain in letter people is said to have bad connections between the two sides, and this is part of their explanation. The other part is that it is a further development of the human brain to increase brain capacity and receive frequencies that enhance our evolution as a species. The brain is compartmentalized to protect the bearer from being programmed from outside sources. Otherwise, you could not continue to get ‘clean’ ideas and thoughts. A lot of subliminal programming is taking place from media and other sources via ‘streaming’ different frequencies through the bodies.
There are some points worth adding about letter children/people. They don’t seem to have an ‘off-button’ to use when necessary. They cannot easily turn off their thoughts and the stress response (‘fight or flight’) in their nervous system, and that makes them more prone to stress-related problems. It is of importance that the parents don’t over-activate these children (more easy to say than do, because these children have lots of thoughts and a vivid imagination), but let them get bored sometimes to ‘down-regulate’ the ‘on-signal’ in the autonomous part of their nervous system. I’ve done scannings with the DDFAO on young letter people and noticed that their nervous system is more activated than in ‘normal’ kids. If this signal isn’t down-regulated now and then, their adrenal gland is becoming exhausted with hormonal imbalance(this is the same for older letter people also).”
Depression: “The second part I cannot emphasize enough. They are more prone to become depressed, not least because they use more vitamins, because of their more rapid metabolism, especially in their brain and nervous system, and, therefore, they can easily become ‘chemically depressed’. This depression is more difficult to meet unless they are put on hypericum and extra vitamin D3, in combination with the vitamin B complex and MSM. Synthetic anti-depressives are really bad for them, and only add to the imbalance in their brains. In the worst-case scenario, they commit suicide.
Dr. Ohlson, PhD Molecular Biologist.
You could probably contact her via Mary Rodwell, who has written a book that includes the above information about these children: [email protected]

Grannyknot Fri 26-May-17 09:12:03

Hi musicelf I don't know anything about autism, but I saw this and posting it in case helpful:

www.theguardian.com/lifeandstyle/picture/2017/may/26/understanding-autism-part-three-how-to-manage-a-meltdown?CMP=twt_gu

MagicBubble Fri 26-May-17 09:07:55

My Grandson has ADHD and used to cause disturbance in his class at school.

I bought some Omega-3 capsules and he was very good at taking very high doses every day - but after 2-3 months is was obvious that this did not work.

Reluctantly my Daughter-in-Law took him to the doctor and he was prescribed Ritalin

This calms him down at school, so he is no longer disruptive.
However he looks like a zombie when I collect him from school and it takes a lot of effort to get an "outgoing" positive reaction from him.

He does not take the Ritalin at weekends, and then he is is his usual bright and sometime wild self. But his father is at home and together his parents can cope with him.

I hope that this is only a phase and that he will grow out of it, but it provides a "solution" at the moment.
.

Starlady Fri 26-May-17 07:27:13

P.S. Her email sounds like a cry for help to me, and I'm glad you'll be visiting soon and bringing her a list of resources.

Starlady Fri 26-May-17 07:24:24

Nothing to add except hugs! Also the fact that I'm glad dd can offload to you. That probably means a lot.

frue Thu 25-May-17 22:38:54

respite care - possibly with foster carers to give your daughter and her other children a break

newnanny Thu 25-May-17 20:56:59

Could she ask social services for a respite break for a couple of days every three or four months?

harrysgran Thu 25-May-17 19:24:07

Attention deficit disorder

harrysgran Thu 25-May-17 19:22:42

My heart goes out to your daughter my son now in his late 20s was diagnosed add aged 6 he was given Ritalin which was great for helping him while in school but home was a living nightmare very little was known of the condition then but my saviour was a small support group I will never forget the relief of being able to unload with those that really knew the he'll we were living through also I would say contact the autism outreach team the school should be able to put you in touch the good thing is she has you how I wished I'd had my own mum at the time to support and listen so you are doing a terrific job on the plus side my son has a job he enjoys he drives and has a lovely girlfriend all things I was told and constantly worried he would never achieve so tell your daughter to hang in there and to look for and accept all the help she can get

Laine21 Thu 25-May-17 18:03:03

www.autism.org.uk/services/nas-schools.aspx

one of my daughters friends was going through hell with her autistic son, she was hospitalised twice after his attacks, he was only 9 years old. with the help of her GP and the local authority, she was able to get a place at one the NAS residential schools. he was there until last year when he was 16, he is now at a local college and settled back at home. she believes the residential school was the best thing for him. he was there monday to friday and came home weekends.

ajanela Thu 25-May-17 16:03:45

A friend who has an autistic son says he needs his own space and privacy. Her son is home schooled. After a day coping at school I feel you GS must be very stressed plus the being "wound up" by his young brother.

My GS is also on the spectrum, goes to a normal school but is isolated and bullied. Any child willing to befriend him is jeered at. He is an only child with a single mum but has his own space and is outside on his trampoline in all weathers as a stress reliever. A year ago he was bought a puppy. First time I saw real smiles for years. This is a very friendly happy dog and had made a great difference to my GS life.

So from this I am thinking is there any way your GS could have his own quiet space. Joking not, I thought of a shed in the garden, a sort of man cave. Sorry if this is not helpful.

Musicelf Thu 25-May-17 15:41:47

Once again, a profound thank you to all you lovely people who have given advice and suggestions - but most of all, support. Sometimes it's just good to know that we're not alone in what we have to deal with.

There have been a lot of excellent suggestions made, which I will explore with my DD.

Musicelf x

Direne3 Thu 25-May-17 15:21:14

Our grand-daughter will complete her ABA (Applied Behavior Analyst) qualification next year and from what she tells me of her work experience in schools & clinic the results can be amazing - suggest you Google it. Wish it had been around when her severely Autistic cousins were younger(although the support for them has recently greatly improved). ABA is widespread in America but has only now begun to filter into the UK. Don't know who will be able to advise you re. funding but from what their mother (our DD) says CAMS should be your daughter's first point of call. They have a 'duty of care' for the safety of the youngest sibling and she should stress the problem when talking to them.

Morgana Thu 25-May-17 15:06:08

There is a course for parents dealing with A.S.D. might be worth considering if u have not already been there and done it. Good luck to you all.

jacig Thu 25-May-17 14:01:15

Hi musiclif, I know exactly how your fell I have a gs the same and it's hard work. Has your dd joined any local support groups, it has helped my dd to talk with others who are dealing with the same problems. Have you looked into your gs getting an assistance dog, they are trained to react to changes in the smell of your gs which alerts you a few minutes before the meltdown starts. The one my gs has will push him against a wall and stands pushed into him, like a hug, until the melt is finished. The dog then guards him until help comes, and as an assistance dog he goes everywhere with him. Hope this is of use.