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You think you come to terms with it...then..

(37 Posts)

Little things, really really little things, remind you that you never really do..

Today in the car home from school, DS2 was happily (and excitedly) talking about Santa (yes in July I know grin) How Santa always waves to the people tracking him at Norad etc etc.

I was vaguely listening and turned to him when the thought entered my head 'must give him a shave tonight'

Then the two things collided in my skull.. he's 14, he still UTTERLY believes in Santa, and he needs me to shave his top lip because he is a young man now.

Then my eyes filled up, because no matter what, no matter how much we accept his LDs and ASD no matter how amazed we are and grateful that he talks and is healthy and happy in his world.... the reality if his disability sucks and after 14 years still hurts...sad.

drivemecrazy63 Mon 11-Jul-11 16:46:27

Im sorry to hear your feeling down , i feel tearful reading that because yes sometimes the reality of it all hits you hard is he getting older mentally but just slower to his peers or has it slowed down and evened out now?, my ds is 11 but mentally and academically about 6.

There are I supposed trying to be realistic going to be times like these when we really notice the irony the differences ect, I try very hard to ignore those differences and at home with the family I can do so fairly well but when were out and about or at school anywhere there are other peoples dcs thats when they stand out much more, when you hear the girl next door who sounds like a teen in comparison.

we have to look at the positives as much as possible and celebrate them so there are less and less days like these , but I can imagine the shock, the realisation dc is disabled as if today was the first time hearing it .. it does hurt so very much (((hugs)))

Becaroooo Mon 11-Jul-11 17:53:04

I'm so sorry you are feeling down sad

No advice whatsoever but didnt want your post to go unanswered x

EllenJaneisnotmyname Mon 11-Jul-11 18:05:12

I can imagine the shock, the realisation dc is disabled as if today was the first time hearing it .. it does hurt so very much

That's so beautifully put, drive. Brought a tear to my eye.

I found myself trying to hold DS's arms down (he flaps and windmills a lot) at the new parents evening at his next school (secondary.) Only a very few children knew him so there were all these parents and children and I was trying to get him to look 'normal.' blush How daft is that? I was quite ashamed of myself, I'm usually 'not bothered' but this transition to secondary is bothering me. I feel we've had an easy time in primary since the first couple of years, as all the kids accepted him and the parents knew him, but now it's all change and it's scary. So his disability is hitting home at the moment.

Becaroooo Mon 11-Jul-11 18:07:33

ellen I can relate to that.

I remember hissing "stop prancing ds1 wal properly" under my breath at ds1 when walking across the playground to meet the HT at his new school.

Yeah.

That will make it all better.

sigh.

Lougle Mon 11-Jul-11 18:10:28

I identify strongly with this. DD is 5.7, and I said to someone on the phone 'I'm ok with it now'. Then yesterday, I took her to a Hog Roast at a church member's garden. I sat and watched my darling girl playing 'duck, duck, goose', then saw a girl who was just 6 weeks older than her, who knows her, slowing her running and saying 'oooh you're going to get me....' - as she would to a toddler of 2 years old, because really, that's what DD1 is.

Becaroooo Mon 11-Jul-11 18:12:14

lougle

Sometimes it hits you like a truck doesnt it???

sad

EllenJaneisnotmyname Mon 11-Jul-11 18:14:24

But you are OK with it most of the time, aren't you? It's just sometimes, something small catches you out and you're not able to be brave all the time.

auntevil Mon 11-Jul-11 18:17:16

Ellen and Becarooo - I can relate to that as well. Do you think that when our DCs are in their 20s, we will still be going under our breaths 'hands!' (windmill-esque!) or 'stop skipping' ? As Medusa said - it's the little things that can knock you back down somedays and give you a dose of reality.

Lougle Mon 11-Jul-11 18:21:27

I do sometimes gaze into the future, and try to imagine what DD1 will be like. I can't. I can't get the 'cute' DD1 out of my head. What is it like to have a grown woman who is acting like a child? Will she even be like that? I don't know.

I do see DD3 overtaking her, and I lose my breath every time. She is 2.3. I look, and see that DD3 can jump free-style on a trampoline. Or jump full-stop in fact.

DD2 is 3.11, and can read 20 words, starts Year R in September. DD1 thinks every word that starts with a 'M' is her name.

Even DD3 is potty trained now, but it is DD1 that I caught playing with a potty full of wee and poo <boak>.

Depressing.

Becaroooo Mon 11-Jul-11 18:24:59

auntevil I can totally see myself doing that!!! I really try not to but when ds1 is prancing or any of his other little quirks I get upset when people stare/point etc and I suppose I think that if I can stop him doing these things in public then he will never be aware that people are pointing and staring and that he is diffferent IYSWIM???

Thankfully he is too young to notice atm.....

Becaroooo Mon 11-Jul-11 18:26:38

lougle sad Yes. I try not to look into the future. Its too scary for me right now. I have to concentrate on getting ds1 to fulfill his potential.....I cant think any more ahead than that atm.

drivemecrazy63 Mon 11-Jul-11 18:40:42

im at that point already have been for a few years where unfortunately there are a few nice people but we seemed to had found first and two middle schools where people were not quite so nice and did point and snigger and worst still bully because of the differences and ds was in year 3 middle when it he really started noticing people were mean .
so sad sad then a year or two on and he hated himself asking im useless whats wrong with me why am i stupid and why do people hate me.. and so the self loathing began along with the bullying and a vicious circle , i changed middle schools hoping things would improve they didnt , i saw children pointing thumping he came home being regularly hurt by the same gang of boys (girls loved him and were very kind trying to be motherly) i felt useless a complete failier as a mum.
he was trying to drown himself, tie things round his neck , running away (at 9) hes still my baby i wanted to protect him , i got angry and bitter and waited and waited to be dx.
hes now in SS and the happiest ive known him so please remember however bleak it can feel however cruel the world seems there is a light at the end of the tunnel.
Ds journeys not over yet hes in year 7 in sept butim more relaxed than ever on his behalf I know now they will do their best for him now ive different worries about exams possibly one day, a job if possible, and the worst one of all what ifs , what happens if i die? who will care for him , made all the worse by his now awareness since his nan died i might now be here one day... I hope and pray there are a lot of lovely people like you out there to take care of my baby and ill take care of yours.

Becaroooo Mon 11-Jul-11 18:46:58

Oh DMC That made me cry! Your ds sounds lovely <<and there are plenty of us to look out for our kids>>

x

TotalChaos Mon 11-Jul-11 18:49:01

such a touching thread, and so much I can relate to - stop prancing/quacking/making silly noises/terrified of transition to secondary - (mind DS is only 7 so I try to park that worry for a year or three).

dmc - sorry your lad had such awful experiences at middle school.

MissKittyEliza Mon 11-Jul-11 18:49:43

I'm right there with you Medusa.

Sending two hugs.....one for each of you.

drivemecrazy63 Mon 11-Jul-11 18:53:39

im so sorry tearful today, but we must be brave and forever hopeful of happy times to come, ds has just as im cooking his tea run into the kitchen and hyjacked his meat off his plate and wrapped his arms around me saying im starving ... so im lucky he is improving in leaps and bounds verbally since starting his new school and im very grateful for what ive got.

MissKittyEliza Tue 12-Jul-11 10:57:38

Dmc.....the more I read on here, the more I want to take my ds away from anything or anyone that will hurt him. I could, I'd close the door on the world and just hunker down, the pair of us.

My ds is ten. So far, the kids have been supportive and kind at school but outside of, we get comments and sniggering etc.

But I know a time is coming.....

DJAngel Tue 12-Jul-11 23:11:03

DMC - I get exactly what you mean.. there are sometimes things out of the blue that we suddenly see with different eyes.. DD is so delightful and only 5 with SLD and yet life with her is such hard work.. there is a groundhog day feel to our lives! I remember a discussion a while back about this issue and someone said you never actually come to terms with it, you come to terms with never coming to terms with it, which sort of makes sense to me.. I'm not there yet though.. still feel racked with the ache of it all quite frequently, 3 years on from diagnosis..

I hate to say it but there's some relief in knowing that it's quite likely that dd will die before me as I can't bear the thought of leaving her, but I love the thought of identifying another Mum with a sn child to take care of her if I died first.. That is a very comforting thought..

Our lives are very tough I guess aren't they and sometimes we suddenly feel it in such a raw and painful way, whilst other days we just get on with it, coz that's just how it is...

coff33pot Wed 13-Jul-11 00:22:33

It is late and probably not the best time in the world to read such a heart wrenching post sad I know that I am only on the road to a dx but I do know what down days are its like a heavy weight I am carrying. The only thing that keeps me going is getting everything possible in place for my DS and the fight for it keeps the spark going. I have replaced the grief with defiance. Maybe not the best idea but it keeps me putting pen to paper at the moment. I feel in control of the situation I am in together with my DS. If I lost that and that will be at the dx stage I know I am going to crumble. My heart and hugs go out to each and every one of you x

MissKittyEliza Wed 13-Jul-11 10:13:55

My ds has ASD, OCD, Tourettes. Meds have brought the verbal tics under control beautifully and have had a reasonable effect on anxiety levels. He has high functioning ASD. But, he is ten and has no friends, no siblings, older parents and little wider family.

Two nights ago, whilst having our cuddle on the bean bag, he asked me if his wife (!) would have kids. I said, I didn't know cause no one knows what lies ahead of us...... He then got really upset and said that, when I die (mummy) will he be an old man in the street and who will he be able to do his check lists with him? (OCD). He said, he might be an old man with a stick on his own.

I can't, at the moment, imagine him developing any friendships..... A girlfriend, a wife and kids....... is way beyond my imagination. sad

sad

LaydeeC Wed 13-Jul-11 23:23:53

Yes it does still hurt - my boy is almost 14 and was diagnosed with AS when 6. I think the only thing I have come to terms with is that I will never come to terms with it.
I can still feel the truck that hit me the day we were told that he was probably on the autistic spectrum. And then the escalator trip started. The whole fight for a decent education for him, the involvement of SS to get him into the 'system' so that it would be easier for him when he is an adult (what a joke), the DLA claims...
Regardless of how much I love and adore him, it is not a life I would choose for anyone - and I guess we are one of the 'lucky' families

nadia77 Thu 14-Jul-11 00:00:43

i read the first few replies to this thread and the skipped to this bit because it is far too scary to look to future my ds is 4 has asd and non verbal i'm still hoping he will start talking currently he can just say basics and answer with yes or no! i dont think i will ever come to terms with it! big big hugs to everyone

lockley Fri 15-Jul-11 10:28:08

This really touches a nerve with me at the moment. I had my ds diagnosis (ASD) 4 mths ago at 3.10 but really knew from about 21 mths. Thing is people expect you to be moving on and coming to terms but its so true that you can be having a perfectly happy day and then something small happens and it hits you all over again.

Yesterday, one of the mums at my older daughter's school asked how they were going to manage ds in school in Sept, would he have 121 support? I kept it together but came home and sobbed because I had naively thought that people who pretty much only saw him for a couple of minutes at a time at pick up/drop off wouldn't even have noticed his difficulties. Have also had the sinking feeling in my stomach when I realise younger cousins/friends can sense the differences and are treating ds like a baby.

Hugs to all of you.

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