I was waiting for my son to go to sleep. He is not 1, he is 11, but he tells me that he is too afraid to go to sleep on his own. That's Asperger's for you.
I am not a patient person and waiting for up to 2 hours for my son to go to sleep does not work well for me, even with an iPad to keep me company.
This particular evening I was more tired than ever, and I lay on the carpet, and my eyes started to droop. So I closed them for a second, as you do. And woke up some time later. Luckily I didn't tumble down the stairs.
I knew then that something had to change.
A new regime was needed. So now I sit down with my son in the living room for a hour after putting Smiley to bed, and then bring him up just before 10. Then I load the dishwasher, clean the kitchen and go up myself to try and get in enough hours of sleep to cope with the early morning call of my son or the alarm. He has trained himself well. Even with the later bed time he still wakes at 6am and sees absolutely no reason to get up any later. If he gets up, I have to as well. No longer will he go down stairs on his own.
So my evening is gone.
Is the pattern set now? I could live for another 30 years. Will I be at the beck and call of 2 children around the clock for the rest of my life? I'm not coping well with this thought.
You see I've also had to cancel Smiley's respite again. It's not that they're doing anything wrong, but it's just not working for her, and I am not hopeful of finding an alternative. No new dates for Smiley's Sunday outings have been suggested either, so perhaps that service has finally been cancelled too.
It's like motherhood backwards. It was difficult when they were little, then it got easier as grew, but from about 10 onwards it has all changed. I can no longer carry Smiley and pretend she is an overgrown toddler, and my son also needs huge amounts of my time, he does things for himself now, but needs lots of reminding and direction and my presence: I'm becoming a helicopter mum: the other kind.
The lives of many of my friends are very different now and some relationships are fractured. For years I was able to say that I had lost very few friends as a result of my two younger children. But that too is starting to change. Some have disappeared altogether, others no longer get in contact, or the weeks pass and I forget to contact them. I can understand it. Their teenage children have completely different needs: lifts, money, guidance, grinds.
Yesterday I cried in front of one friend as I recounted the hurt I felt as yet another person told me how much free time I have now that the kids are back in school.
I'm sorry, but you're wrong.
I don't have a bad life. Far from it. But remember the first year of your baby's life? It's still like that here. And it's not "just a phase", it's for real, and perhaps it's for life.
But I have a good life compared to so many. And I need to hang on to that thought...and organise another night out...
NOTE: This post is for me, it's self-therapy, and I hope it doesn't sound too moany, but it helps me so much to work through things. Perhaps it might help someone else too.
My heart goes out to you, this must be really, really tough :( Have you made any new friends as a result of your children's special needs? Sometimes it's easier if people understand one another. What is good, is that you have a better routine than sitting on the stairs for 2 hours, how awful and no jobs getting done either! What a fantastic mum you are, parenting is tough at the best of times, but doubly hard on you :(
ReplyDeleteIf it helps to write it then write it. However, I get the sense that you need to think of some longer term options for real help for you. I hope there are some.
ReplyDeleteMy heart goes out to you honey, you do such a wonderful job, and you don't have to be perfect or cheerful all the time. I'm glad you always tell it as it is and are honest about your challenges. Let yourself tell them and tell us about the pain and the tiredness and the struggles. I can do little except read your words, send you love and respect and hold you in my thoughts. X
ReplyDeleteYou're not being moany - just saying as it is.
ReplyDeleteI too wryly laugh at the "you have time on your hands" comments from near and far. I wish (and i only have Peter and Hubbie and other 2 kids still at home)
But if i don't go book the respite for when i want it - it doesn't happen. I sometimes have to chase up workers with the support coordinator. Chase expenses, do the guardianship, fill out the paperwork - i feel like telling people to try MY day.
I wish i stayed closer - on the times when Peter is off at college/ out with his support, i would come over , make you sit down and i'd make us a cuppa.
Our latest is finding out where Peter's genetic probs are. Even one of the GPs dismissed me asking for a referral - why after all this time do i need to know??
I just do. Ok. Deal with it.
Ah, well - onwards and upwards. If i didn't laugh, i'd cry
You are not being moany at all. The way I see it is we don't have it the way other people do. Our lives are harder, some more than others. What I see is a kind, loving mom telling the truth. And by telling the truth others can find comfort in knowing they are not alone.
ReplyDeletexxoo
@Suzanne - THAT is one of the good things - I have made a great number of fabby news friends through special needs, and they are amazing :)
ReplyDelete@Midlife Singlemum - If there are, I will find them x
@Foxglove Lane - Thank you x
@Julie - I know, I wish we could all get together sometimes - and I have a genetic appointment for Smiley next month, but it is worth it, because there have been huge advances since it was last checked
@Lizbeth - Telling the truth is all I can do :) xxx
Writing it out helps and IS great therapy, so glad you have that at least. The thoughts crowding your sleep deprived mind must be daunting. Hang on in there. You still have some friends left. I mean, I can be a real friend. I can even do 'nights out' ;-)
ReplyDeletexx Jazzy
Amazes me how much we don't say what we really feel - in case we're considered to be whinging.
ReplyDeleteYou're entitled to a little bit of whinging. You're exhausted and coping very well on your own with your beautiful but very demanding kids.
I do think you need respite though. If something isn't working, can you discuss it with the service providers and see if you can make it work? Or if there's anything else available?
Don't try to be brave all of the time honey. Speak out if you're struggling, or sad, or worried.
And take all of the help that's out there.
Sending hugs xxx
Oh Candi, imagine I am holding you in a warm gentle hug.
ReplyDeleteI so admire you, which isn't much good to you, when you are dealing with so much. I sincerely doubt I could do what you do daily. I know I couldn't!
Keep that date with yourself for a night out, it's important for sanity!
Love and warm hugs,
Trich
@jazzygal - I have lots of friends still and you are definitely one of the best xx
ReplyDelete@Donna - Thank you and yes I am already looking for alternatives, I know how much I need a break xxx
@Irish Minx - Thank you so much for your support x
I know what you mean, the constant need to do things for them is so draining. Glad you've changed routines for bed but sad you're not getting your 'me' time - everyone needs that. Hope someone pops out of the woodwork to help soon - wish I was nearer! x
ReplyDeleteYou aren't alone. There are countless others that are awake at all hours of the night, struggling to keep their eyes open. I know too well what it feels like and I sympathize so much for you. This was supposed to be for only a short period of our children's lives but for us, it goes on and on. It is so difficult not to compare our lives to others. But you are on the right track, making the changes that need to be made and concentrating in the positives. Hang in there, you sound like a wonderful Momma!
ReplyDeleteYou aren't alone. There are countless others that are awake at all hours of the night, struggling to keep their eyes open. I know too well what it feels like and I sympathize so much for you. This was supposed to be for only a short period of our children's lives but for us, it goes on and on. It is so difficult not to compare our lives to others. But you are on the right track, making the changes that need to be made and concentrating in the positives. Hang in there, you sound like a wonderful Momma!
ReplyDeleteSo not moany at all!!! You sound completely typical to me! That thought of forever is too enormous to really contemplate somedays. Xxx sending you peaceful sleep vibes :)
ReplyDelete@Stephs Two Girls - I wish I was nearer too x
ReplyDelete@Allison - It's one of the reasons blogging helps so much isn't it? The realisation that you are not alone. I get so much strength from that x
@Big brother, Little sister - peaceful sleep vibes sound lovely :)
Hi, I found your post on the weekend roundup at Love That Max. I am a blogger, author and Mum and I empathize with you about wanting a retirement from extreme mothering, while still wanting to keep a vulnerable child safe 24/7. This is what I wrote in my book "The Four Walls of My Freedom", "...one of the moral underpinnings that I require is the freedom to grow old without being my son's caregiver 24/7. A retirement of sorts, a hope of not changing my son's diapers when he is forty-five and I am eighty is a moral "right" in my view. Neither is it acceptable for a young child to care for a disabled parent. The natural trajectory of giving to another is a model for normal here, and our society should use it as a benchmark for policy-making". Btw, my son moved into a wonderful (thank GOD!) care home last summer at the age of 24, but I felt as you between the ages of about 14-23 - my son requires 24 awake nursing care and I was doing most of it myself. He continues to be an adored member of our family.
ReplyDelete@Donna Thomson - Thank you so much for understanding xx
ReplyDeleteYou are someone who could never be called moany - you are amazing. This post is just so tear-jerking (i just cried) and has really made me realise that the trouble I'm going through will get better very soon (and is) and I should just stop moping about. I know I've said it before but I so wish we lived closer.
ReplyDeletexx
p.s. Congrats on making it through to the final of Blogfest! I couldn't comment on the post - it wouldn't let me :(
@Heather Lucas - You know one day we may meet up, I'd love to meet you and your gorgeous kiddies. Thank you for your kind words...you see I turned off comments deliberately on the other post xx
ReplyDeleteI so get this. I was only thinking the other day that my mothering feels very extended in comparison to others. I still feel I'm parenting young children, not a preteen and a teenager. If anything the last four years have been the hardest ever and I have even less freedom than when my children were toddlers. And with regard to friends; they have slowly moved away and embracing greater freedom for themselves. I look on and wonder whether it will ever be me. Deb xx
ReplyDeletePS you are not being too moany at all; you are writing about a side of life that many of us identify with and hopefully others can learn about.
Thank you for writing this post. It is so reassuring to know that other people are going through the same thing. J1 can not sleep on his own. One of us always has to sleep on the sofa in his room. He has to be turned in the night and although people say put a baby monitor in the room and just go to him when he wakes, he is also prone to reflux. He has been known to do this in his sleep. Thus we have to be on high alert all the time (and close by) so we can get to him in seconds if need be, otherwise he will choke to death. Sometimes no matter how you tell people this, they just do not seem to understand. He also wakes very early, between 5-6am, no matter what time he goes to sleep, and sometimes can wake up in the night very confused and 'obsessing' - I assume it is his little brain getting messages confused even in his sleep. Will this ever change? I do not know. How will we cope? I do not know. I just know a special needs parent just does and will always do. I really hope you get the respite issues for smiley sorted out, they do make the world of difference. Big Hugs (and keep writing).xxxxx
ReplyDeleteBrilliant post and one which many will relate to but never quite express for fear of being 'moany'. I appreciate and empathise with how you feel, my patience is running very thin right now and a feeling of suffocation regularly comes my way. I have a good life too and sometimes need to remind myself of all the positive things and like you say - organise a good night out :)
ReplyDeleteKeep writing as it helps others as well as being therapeutic for you xx
I love your honest heart. It is tough and yes, it sometimes seems like all you are is the servant; remember that you were blessed with this child and that he sees in his own way your love and patience. You are his rock and you are teaching him to be a wonderful person. I hear you on the lonely side, it is hard sometimes joining a chat group or if able to get out to a mother's of aspergers group. Keeping my faith has helped and getting out just even once a week for a little breather helps too. Oh, I know how it is to get out or away... I had my daughter (ASD) and she was sick for two weeks (strep and croup) who hadn't had a cold before; I was climbing the walls!!
ReplyDeleteI wish you good luck and applaud you at finding an outlet.