For Thursday 7th July 2011, we were offered our first overnight respite from middlers non stop antics. It was a blessing in disguise, however you describe it.
- This post may lose me readers.
- This post may also make someone else feel not so alone.
Lets take a day in the life of Scottish Mum and her family.
It’s fair to say that middler has been struggling with his brothers since the start of the summer holidays (a whole three school days). Having spent nearly 8 months under mums feet , he considers me as his sole possession. He cannot read, he cannot write, but he can talk and he is highly mobile. We are in the caravan, which is always a challenge, but has usually been good for him.
On Wednesday, woken up by a sharp prod in my chest, I jumped up with a start, and banged my head on the cupboard above my head in the caravan. Racing to get to middler first, I miss, and he takes off out the front door and heads for reception of the campsite to try and jump onboard the little ride on lawnmower.
Reception staff are starting to get annoyed with any children going around to the reception to play, and I don’t want to be thrown off the site. I try and catch up with him. The old wardens used to know him, and kept a watchful eye out for him, but the new ones are more rule orientated – although still very nice.
He dances around the lawnmower and starts to shout and swear at me – telling me I am a “fucking bitch”. I finally manage to catch him, and on the way back to the van, my shins get a few swift kicks. My legs start to feel numb and the pain brings tears to my eyes.
Getting him back to the van, I dodge his head twisting round to try and bite the back of my arms (you know the fleshy bit that hurts like hell if someone nips it – if you don’t know, you’ve had a sheltered life). He’s nearly 10, and not far off my height, and the struggle to control him gets harder every year.
He is in angry mode at being stopped from doing what he wants to do, and his voice gets louder and louder. He slips my grasp and wakes littlest up by kicking him in the stomach. I quicky give him his tablet and try to get him into a safe hold to stop him from kicking the furniture into bits. Elder is woken up and comes down to take control of the legs that are swinging up and trying to knock my head off. He manages to take off the trainers, and any kicks from now on will be much more pleasant.
I know what kind of day I am in for. It’s the kind of day we are in for often when his brothers are around, and I am the sole adult to look after them. Littlest and elder can’t walk past him without a vicious kick numbing their legs, stomach, face, arms – in fact, anywhere he can reach them.
It ends in Tesco for supper when he doesn’t get his own way, and begins to kick the shelves and products off of them. I manage to get him on a wrist strap while elder holds his head to keep his mouth away from my face. Getting embarassed now, littlest and elder decide to slope off to the side of the aisle and leave me to deal with it. I am struggling to keep the intermittent headbutts away from my face, the alternating teeth off my hands and arms, and control the legs that are back kicking my shins as the hands grab chunks of my flesh and squeeze as tightly as they can. He is in full meltdown in the middle of a flaming supermarket.
Unlike a toddler, you can’t leave a near 10 year old to rampage in a tantrum through a shop. He would cause so much damage, that I’d have to work for a year to pay it off, and thats before Mr Plod is called for damage to property. I decide there is nothing for it and I set myself down on the floor with him in a safe hold where we were. We are in the main aisle in front of the checkouts. I can’t move him forward or back, so I sit where we are. I can’t hold him properly in the one person safe hold anymore as he is too strong, so he managed to get to my hands several times. He is screaming, swearing, headbutting and biting. Staff begin to congregate around us, and elder and littlest get upset at people staring.
Nobody bothers to ask if I need any help. Why would they? They think he’s just a spoiled brat and I’m a bad mother. Nobody dares to ask me to move out of the front of the checkouts. Thank goodness for that. Maybe they think I’ll get up and headbutt them.
Such is my life. Such is our life, mine, littlest and elder. Middler keeps it in check for dad and strangers. Then he waits until we are all alone and begins to pound us into what he thinks is his will. No amount of bribery, corruption or sweetie offers will change the path of the outcome. He resents his brothers, and he hates me when I have to split my time between them all. He wants ALL the attention, ALL the time.
In front of those who assess him, he cuddles me and tells them he loves me. He saves his anger up and lets it out for us when he feels safe.
He has a form of brain damage. He looks normal, he walks normally, so therefore, to other people, he must be “normal”. He can’t act like that, can he?
- I am exhausted, but its not physical.
- It’s mental.
- It’s never being able to rest, never being able to go to the toilet without getting someone to sit and hold him to make sure he doesn’t run off.
- It’s not being able to get a shower for five days if there is no other adult to keep him while I have the luxury of a spot of water to clean myself.
- It’s never being able to relax.
- It’s never knowing what he is going to get up to next.
- It’s never enjoying being his parent while his brothers are around.
- It’s never being good enough for him.
- It’s knowing that he can keep that anger inside with other people but his anxieties are building up inside, and we get them later.
- It’s knowing that he is vulnerable as much as he is strong.
- It’s knowing his obsessions rule his life.
- It’s knowing one of his obsessions is to always be in charge.
- It’s knowing a major indicator of his issues is the extreme reaction to the word no.
At the offer of our first ever respite, I drove home and back on Thursday at short notice. A 112 mile round trip for a night of respite. With littlest and elder, we saw him to the respite house. They played hide and seek, and one of the carers for the night is also a helper at his new school for August. His wobble on the way there disappeared and he instantly felt at home. A young girl was on the floor playing. We sat in the room he was going to sleep in, and after a coffee and a quick chat, I left him with strangers.
I walked to the car, choking back the tears – determined not to upset littlest and elder. I didn’t want to leave him. I knew for us, that I must.
- I begin to feel free.
- I feel bad for feeling free.
- Littlest and elder feel free.
- They feel bad for feeling free.
Not having him gives me a taste of what life is like with “neuro typical” children. I mourn the lack of that life.
He will be back with us soon, and my heart fills with equal measures of happiness and dread. I love him, and I will protect him until my dying breath, but I don’t like our life. I don’t like how we have to live, I don’t like how littlest and elder have to live, and I don’t know if I can do it forever.
When he is too big for me to control, he may have to go to residential somewhere. I don’t want to do that to him as I know he would not cope with that.
Some days I don’t know how I will ever get to the end of it.
I always do.
Some days are better than others and for those days I am grateful.
He is not the cause of his anxieties, and he should not be like this. He should be a happy, carefree “neuro typical” child. He isn’t. Every day, I wish that he could have the life that he desires. It makes me so angry to see his struggles to live each day.
He wants to be “normal”.
Having brothers only a year older, and a year younger than he is himself, means that he can never forget what he is, and what he cannot do.
So now you know.
- As a rule, we special needs mums with behaviourally challenged children don’t tell you exactly how it can be.
- As a rule, you wouldn’t believe us if we did.
- Our children don’t respond to textbook strategies.
- We sit alone, thinking how awful we are as parents.
- Our confidence disappears as people treat us with condemnation rather than respect and help.
- We read, and read, and read, and read.
- We try to find a cure.
- We lose our old friends, and sometimes we are lucky enough to make new ones.
- I am lucky.
When my son was 4, I thought I was the only person being beaten up by their child. We were in the process of adopting him, and I was scared to say how bad it was in case they took him away. I loved him, and I couldn’t see any harm come to him.
I thought love was going to be enough.
Love is not enough.
- Don’t judge a struggling mum.
- Give her a smile.
- Don’t dismiss every child who swears or kicks as bad.
- Don’t think a family is coping, just because they seem to be.
I am grateful to the woman on the checkout we chose in Tesco on Wednesday.
- She smiled.
- She asked how we were.
- She knew what I was doing as she has a grandchild who is being assesssed at the moment.
- She lifted my spirits.
We came back to the caravan, we went for a walk and I tried to teach him how to skim stones on the lake.
- He comes back to see me today.
- I can’t wait to see him.
- I have missed him.
- Littlest and elder have missed him.
Respite is good.
A handful and a half; it took my brain some time to realise that this is exactly what having triplets is, lol!
Autism is indeed a journey – littered with false-starts, dead-ends and sudden detours. Sometimes the journey is humorous and magical; often it is not.
A handful and a half; it took my brain some time to realise that this is exactly what having triplets is, lol!
Autism is indeed a journey – littered with false-starts, dead-ends and sudden detours. Sometimes the journey is humorous and magical; often it is not.
I have just read this again. I feel your pain. I share your pain.
It is so hard having to constantly juggle the needs of a child with autism and other siblings too. The guilt at welcoming respite and ‘normality’ can be assuaged by recognising that everyone in the family benefits and that maintaining long term stress is not good for anyone. I can only hope that things get better for you, but I also know from experience that puberty and challenging behaviour with autism thrown in for good measure is not the best combination.
I wish you strength for the future years. It’s a rollercoaster journey that I am currently travelling – although I’m a bit further down the path than you. My only advice wold be to tear up the rule book and do what is right for your family. From the sounds of things you are already doing this remarkably well.
Triplets. That’s a handful and a half. Thank you for the comment, its a long road, isn’t it?
Your post greatly moved me. I cannot even begin to imagine how you are able to hold your center amidst the turmoil you experience. Never think of yourself as a “Bad Mother” because you are clearly anything but that. As time moves forward remember that you are human and so are your children. If you continue to make choices with your heart then you will not go wrong. Trust yourself.
Blessings to you and your family!
What a great article for anyone who has ever had to deal with a child who is ‘different’… and for those sometimes too narrow-minded to appreciate it. The many you will have touched far outweighs the few who may or may not have stopped reading. Truly heartening and I’m grateful to you for writing so honestly.
I want to thank everyone who responded to this post. I have met so many more lovely people online who found me because of it.
Xxxxx
Wow – was recommended to view your site after writing my blog – have a look at this –
They are very different stories, but I still feel your pain, you are doing an amazing job, well done x
I hope you never, ever doubt what a extraordinarily WONDERFUL mother you are.
You won’t get any judgement from me. Reading your story brought a lump to my throat,- you sound like an amazing lady, and I’m sorry that you get so much judgement in society when you’re clearly a fab mum. I really hope that things get easier for you. x
Wow, this made me cry as I can totally relate to this. Thank you so much for your bravery and honesty, it is freeing and enabling to the rest of this going through something similar. The fact is that we put up with all of this and still love and take care of them, as you’re 100% right we do often feel the need to hide everything we’re going through and feeling. I’m glad you were able to use respite care and that you and the family had some time-out 🙂 I only recently heard of respite care, as we do not have anything remotely like it in South Africa (nor any other support) and I think its a wonderful idea and glad you were able to use it…. Thanks again x
I work in a school for children with severe ASC so know how hard it is to deal with challenging behaviour. I too am battered & bruised on a daily basis & often come home from work physically & emotionally exhausted. I love my job. I care very much about the children I work with, but I am grateful that I get to leave at the end of my day. Most of our children are residential, but I’m in awe of you & the handful of our parents who continue to look after their children at home. I’d like to think I would too, but in all honesty, I’m not sure I would cope. You have my admiration & every best wish that people become more understanding and tolerant of difference. I’m glad you got the respite your family most definitely needs & hope you get the opportunity again soon. Well done for writing such a brave & honest post x
I can only echo everything previous commenters have said. I truly hope that you get offered the respite you need. And any lost readers were not worth having. Much love x
Thank you for writing this post, I am off yet again to see the paedicatrician about my boy this week and it has given me something to discuss. He is a quirky child and is prone to similar behavioural episodes, although not as extreme as this. I really do know where you are coming from. I wont offer you sympathy because that is not what is needed, what you need is space and I think that is what you are getting. Dont feel bad, enjoy the time and then you will feel in a better place to enjoy and embrace him when he returns. Xx
Wow that must have been hard to write down for all to read. Well done and there’s nothing wrong wit you and your family getting some rest bite. It probably makes things better because you all miss each other and gives you a little break to have him again with re-newed energy. You are a grew mum and this post is very touching to read xx
Sending big hugs and a big smile.
Sending Big Hugs your way!! I can really sympathise with what you are going through! My 5yo son is aggressive towards me, but can be good for his dad/grandad/strangers (he’s diagnosed ADHD & awaiting diagnosis of Aspergers Syndrome).
Respite will do you all the world of good. Your other 2 can have some mummy time, you (might) relax a bit, and middle one will be having a ball!!!
People do not have the right to judge until they have walked in your shoes!!
Enjoy the respite!!! Xxxx
That is one of the most moving things I have ever read. Much love to you all x
That can’t have been an easy post to write. BC (Before children) I worked for the NAS and marveled daily at the immense strength of character of the parents and carers at home. I know something of the difficulties you’ve faced from a professional point of view but as a Mum, I really haven’t a clue. Your post is beautifully written and I hope many Mums in the same or similar situations get to read it, to realise that they are not the only ones.
I really hope I get the chance to meet you someday, you sound like a fantastic Mother and someone I’d really like to know in “real life” x
What an Amazing post. You have done, and are doing such a hard job, but you’re doing it so well. I wish people could read this and understand rather than judge you.
Sending you all hugs.
X
I’ve not stopped thinking about you since we met the other week…you really are amazing and you and Littlest and Elder deserved that one night. I’m just sorry that you don’t get more respite than that.
I cannot believe you could possibly lose readers after this post…
X
This is an amazing post, thank you. I feel ashamed of worrying about my toddler’s typical supermarket and bedtime tantrums now that my eyes have been opened to experiences of mums like you. Well done for trying so hard every day, what incredible loving parenting – and honest moving writing – I have learnt a lot here and I will try always to help not judge if I ever come across a parent in a situation like this. So grateful you shared. Wow.
Thank you for sharing this, it will without doubt, help others who are in similar situations.
My oldest has special needs in very different ways, I often think about blogging about it and how far we have come but haven’t because I have felt so protective and unsure of the response. Maybe I will now I’ve read yours…
Rest bite is important for you all and Im really pleased you have got it.
Love from me xx
I hope you, E, & L slept, and slept and slept. I have lost track of the number of Moms/Mums of SN kids with stories like yours. Respite provision is scant; glad you finally got some.
You sound like a pretty amazing,strong and selfless mum to all of your children. As with all of these situations I feel really humbled and a little ashamed to ever moan about my two kids when they’re being what I feel is a bit of a pain in the ass!
My friends nephew has severe challenges and watching him grow up it always seemed to me that whilst his behaviour hadn’t really changed it was society that made it less acceptable as he got older, when he lost the cute factor people looked almost scared, shocked. He is now 21 and has a job, care housing and his mum and him have a good relationship.
I hope you felt good writing and publishing this, it’s likely youve helped someone who has read it.
Caroline.
You are AMAZING. I have told you that before and I will continue to say it. I know this must have been very difficult for you to post and you have my utmost respect.
Shame you are so far up north, but here is a MASSIVEW virtual hug
xxxxx
I am so emotional after reading this. I want to give you a big hug. I wish I could help. I have no idea how hard it must be for you – and how torn you must feel, loving your son, yet needing time away from him.
I will definitely try not to judge other parents and their children after reading this. You never know what someone else is going through.
Don’t every feel guilty love. Your children love you and know how much you do for them. I’m sure of that xxx
I’m glad you got some respite, and I hope you get as much as you need. Thinking of you x
Oh lovely. Thank you for writing this to open my eyes to what life is like for a mother of a child with special needs. I can’t even begin to imagine the emotional turmoil that you go through!
If you loose any readers from posting this then shame on them.You are a credit to motherhood and I believe you will have done a power of good with your writing xxx
Stunning blog – in both senses of the word. I cannot imagine how hard it must be for you, how exhausting, how sad. I can only send you my love……. XX
Wow.That is the most touching and heartfelt blog post I have ever read.It brought a tear to my eye.
I think you’re a fantastic mum. I have so much admiration for you and for all the parents of special needs children.
x
We used NCH action for children for respite and social services for a family support worker for my step daughter now aged 23. We opted for full time care aged 12 it was very hard for us but the best thing for her, many of our friends were disgusted with us ‘giving up’ ‘failing her’ and have now reached the situation where they are fighting to get the right care and failing with adult placement. After transferring to adult services 3yrs ago and one home that wasn’t suitable for her, we secured funding and have now moved to south Africa. We miss her every day and the guilt is difficult to deal with, but we have other children who need a normal life and fortunately for her, but hard for us, she isn’t aware we’ve left her.
Hi there. This is such an eye-opener of a story. People need to see this, to help them understand just how real this kind of story is. We as people are too quick to judge what we see on the outside, and you have helped change people’s perceptions. I don’t know how old your children are, but I’m 16, and if any of your kids are near my age and want someone their age to talk to, then I’m right here. I get that that must sound weird coming from a total stranger, but yeah. 🙂
This has made me cry too. It is so well written, and I really feel for you. Whilst my ASD daughter is only 4, and not violent with us, she is still like a big toddler and I understand fully how your son wants to be in control; how it’s not naughty behaviour but just his only way of coping with things. I wish you and so many others didn’t have to bear the brunt of this lack of coping with the world from your own child, but I also wish that all the other people out there in the street could understand the difference between this and naughty behaviour. I can’t believe no-one would offer to help you in the supermarket. I hope you don’t mind me re-posting and asking others to read this, as you’ve explained it all perfectly. The more awareness we create by writing these experiences down, and sharing them with ‘NT’ mums, the better.
It’ll never be easy to let them go, but you know you have to take all the help and respite you can, to keep your family strong. Lots of NT children go to strangers, and lots of those mums probably don’t like it either. A difficult but right choice. x
I find it hard to read such posts because, I, like your son, am not NT. I always want to offer help when I see things like this happen, especially in supermarkets which are a nightmare for me at best of times due to over stimulation. Because of my difficulties I cannot help and apparently my concerned I understand face looks like want to pick a fight.
My childhood was very insular and my teens particularly disabled. I didn’t learn to read until I was 15 I’m now a lawyer and a good one too!
Don’t feel ashamed of needing a break. Your son needs a break too. It’s a very lonely place at times on both sides.
Your story gives me and many others hope that it is all going to be ok, and worth every minute in the end. Thank you very much for sharing. x
What a beautifully written post. No understands what it is like day in day out and how it wears you down. I am pleased you have got some respite. I hope you manage to get YOU back . Take care and lots of love . It was the best solution all round you couldn’t have carried on as you were xxx
There is nothing I can say without feeling a bit pathetic. But I will say that I’m REALLY glad you’ve written this post. There are things here that needed to be said, and you have conveyed the message perfectly. Knowing how “respite” works, I sincerely hope you are able to get some more; as human beings, you ALL need it. Thinking of you all.
xxx
The comments are enough. Isn’t the internet amazing. All we hear is the negative side of it, but few highlight the good it does. x
Awesome, well done for sharing. x x x
I have 2 boys with autism (and a neurotypical daughter). I know how you feel. When my eldest son went to residential school aged 10, it was the first time I had had any respite since he was born, and I felt utterly awful at how lovely it was to get some rest. And my middlie has ADHD, never slept, always on the go, and throwing wobblies in public. These things are invisible disabilities, and the public are unkind, always quick to blame parents and not to help or give support.We have to parent our children the way they need to be parented and not how the public expect us to – but that is so hard! And these are difficult children. That is not to say that we love them any the less, but they don’t make it terribly easy some days.
So I absolutely support you and send you the warmest of love. This is the hard coalface of parenting and we need every bit of help and care there is, if we can be the parents our children need us to be. It’s bloody hard work.
Good for you. And good luck.
xxxxx
Oh gracious, you’ve been through the mill.
We’re training to become respite carers for children like your son, and your story makes me more determined than ever to do this.
I hope you can get regular respite. You are doing a wonderful job. I can’t see how anyone could possibly judge you harshly.
Kylie
Good luck with your training. It will not be easy for you. x
Hiya, I was in tears over that one!! :(:( I just feel lucky that mine had stopped that by the time he was that big! It must be sooo difficult for you and his siblings. I can see exactly why you “left your son with strangers!” You had to for everyone’s sake. Bless you!! I do hope that although it broke your heart, it did you all of you some good.:) xxx
Thank you. We needed it. Three of us in the family need it. I was lovely. x
That is just one day. Many days are difficult, and so many people never talk about it. We all squirrel it away, but we’d talk about problems toilet training, or weaning, but never about how to cope with children who struggle to live. I hope in the end, it does become easier to talk about. x
I really hope you get more of the support and help that you clearly need. I have had similar problems with my son, but he is better a lot of the time thanks to the support from his new school ((hugs))
We have a new school in August, and I hope they give us the support that is needed to also help at home. Hopefully we are over the hump and into the home stretch. x
What an important post and so well written. People make so many assumptions about families just from a brief glimpse, you have shown clearly here that a brief glimpse tells nothing and understanding and compassion mean everything. Thank you for sharing.
Many of us have difficulties under the surface and we feel like we can’t talk about them. I think talking about difficult subjects helps us to cope with them, and helps others to understand as well. Thanks for the comment. x
I know what you are going through because my son used to be like this a few years ago. We couldn’t challenge him without causing him to explode or thrash out – I felt incompetent as a mother and miserable about our lack of quality of life. He has improved recently (and I put this down to being in appropriate education which supports us) but he still has challenging moments and I still have moments when I mourn a normal life. Thankyou for sharing your experiences because there are a lot of families like ours out there. Hope the respite works out for you all. Deb
I am hoping that the new school move helps with home life as well. I am open with them about how he is at home. I wish I had done it sooner. x
Thank you so much for sharing. Reading this post has mafe me a more educated and understanding person. It’s beautifully and bravely written. Thank you again.
Thank you for the comment. I appreciate it. x
We all need some time out at times and I do have a 8 year old son with emotional problems and that alone is draining. He also is very angry and his outbursts are very hard to deal with in public. I sometimes wish someone would just take him for a day, an hour just to give me some time to breath, a day without the fighting and battles. Then I feel I would only feel guilty. At the end of the day, you are still a person other than being mum and you need to be healthy, both pysically and mentally to make you the best mum you can be. I think you made the right call and applaud your honesty, its nice to meet someone who can understand my own thoughts and fears.
As you know, I also have two adopted siblings, one with behavioural & emotional problems and the other is a teenager! You have to do what is best for everyone in these circumstances, even if it feels like a compromise or even letting someone down. You are vital to the family unit as you need to look after yourself as well as the children. It was the very best decision for all of you. That is why respite care is there. Don’t beat yourself up. You have found the best solution for now. x
Thank you for sharing, this has brought a tear to my eye! Was having a trying afternoon with the little ones. Your story has inspired me and made me realise how lucky I am.
LOL
@welshmumwales
What a brave and moving blog post – I shed tears.
Your family deserves all the support it can get. YOU deserve it and your CHILDREN deserve it. I hope there is more respite available for you. Thank you for bringing the postcode lottery aspect of respite availability to public attention.
My (adopted) son is not neurotypical, his behaviour is manageable all the time though and has improved not deteriorated with age (so far). My son is a very straightforward adopted child.
Love and prayers to you and for you and your family.
Such an emotional read. I feel your pain and, although Boo is not as severe as middler, I can relate to everything u are saying, and feeling. It’s a sad thing when we have to keep it all bottled in through fear of how we will be judged.
I’m so glad u managed to get some respite and I hope it happens more often for you. No one can take away the guilt you feel for feeling free, and more relaxed when middler is not there, but u are not alone in feeling that way! I know I am the same on the very rare occasions when someone else takes over. The feeling of guilt will never go away, but having that small amount of time enables us to de-stress, spend much needed quality time with our other children, and to be better parents to our special needs children.
Thank you for being brave enough to share your feelings with us all!
Sending you big hugs and lots of love.
Missy xx
Sorry my comment should have read ‘be challenging’. Fat thumbs! Lol
I am sitting in the garden reading this crying because I totally understand everything you are going through. When my daughter was younger we had that same aggression. She would come at me with knives or whatever she could get her hands on. Thankfully she is much improved tho she can still ND challenging. We are waiting for our first respite to be approved & I’m not ashamed to say I can’t wait!!! Thanks so much for sharing your experiences. Xxxx
This post has made me cry. I can feel your pain, but also your love for all three of your boys.
I can’t imagine how everyday you wake up knowing what is to face you, yet each day you do with such dignity and strength.
Perhaps you can try and get some regular respite. It might be good for you all as individuals and as a family. I just hope that you start to see how much you need some TLC too.
Big hugs and I wish I could help you more.
xxx
I’ve just seen about how respite works. But I hope that you accept all the help that you can
xxxx
Big hugs to you. Is it possible to have a regular night of respite, say every fortnight or something? It sounds like it would be good for all of you.
Thanks hon. We have to wait to be offered respite. We can’t choose as it is usually charities that do it and they have sooo many families who need it. It looks like we may get every 6 – 8 weeks, but its still a waiting game. x
So well written & so sad & lovely. I hope that this has given you the confidence to use respite more frequently as it was clearly good for all of you. Take care. Kx
We can’t choose to use respite sadly. We have to wait to be offered it. Charities provide most respite and they are overloaded. Hopefully we get it regularly every couple of months. We have to wait not to see what we get offered. Thanks for replying. x
Oh sweetheart. I’m so glad you all got some respite.
*hugs* and love xxx
Thank you hon. x