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DS 6th Birthday - a difficult day

(29 Posts)
Belsbels Mon 22-Apr-13 11:31:49

I am relatively new here ? I posted a few weeks ago about my DS who was recently diagnosed with autism, and received some very helpful advice in dealing with the school and other parents.

My DS was 6 on Saturday. He found the whole day very difficult. We planned a party for him, but he had the mother of all meltdowns for nearly two hours before it was due to start, and we very nearly had to cancel. We finally calmed him down, and actually the party was not too bad ? about half the invitees turned up which was good, and my DS seemed to enjoy himself. However, he has been really out of sorts ever since, continually on edge and very difficult to manage.

However, I found the whole experience very upsetting. I thought I was coming to terms with the diagnosis a bit, but it seems maybe not so much as I thought. At the party I saw all the other 5/6 year olds playing with each other, and compared them with my DS who was mostly on his own, or trying clumsily to interact but mostly inappropriately, and it made me sad. I know I need to be stronger and get over this so I can focus on helping him, but it is all so different to how I imagined it would be six years ago.

How long did you find it took to come to terms with diagnosis and to stop comparing your DC?s with others? And are ?special? days always going to be difficult for us and for him? I would appreciate any thoughts, as I don?t think I coped very well and would like to do better next time.

theDudesmummy Mon 22-Apr-13 12:01:47

Oh I really do sympathise. Especially with the part about noticing the difference between your child and the others. Our DS is four soon and I am in two minds as to whether to have any sort of party.

He was recently at the birthday party of another child at nursery (in a church hall not in a home, we have tried taking him to people's homes and that does not always work out so well, what with the obsessive door opening and closing and the fascination with all technology!). It was quite nice, and I am glad we could go (we went late so we were only there for about an hour, which was copable), but it made me just feel sad to see all the other kids sitting nicely enjoying a magic show, while my DS was mostly standing with his back to the action opening and closing the door, or trying to interfere with the entertainer's equipment!

Coming to terms with the diagnosis? Well, yes, I think we have, as much as we can. We deal with it by making it as "normal" to us as possible, if that makes sense. DS is who is is, and our family is what we are, with all our ups and downs and goods and bads. DH and I make a point of going to events for disabled children and getting involved with autism services etc. And being open about disablity and the fact that we live with it. We tell everyone we know socially that DS is autistic and enlighten them about autism and his ABA programme and what is going on etc, in exactly the same way we discuss our other children's progress at university or their boyfriend issues etc, ie just as part of all our daily lives. Our friends know better now than to say things like "oh what a shame" etc. But of course it is still hard sometimes. And yes, so different from what you imagined. Be kind to yourself. Of course you will feel sad. And sometimes you will feel great, when something good happens.

Dinkysmummy Mon 22-Apr-13 12:09:45

This is an awesome poem about coming to terms with having a child with SN

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

theDudesmummy Mon 22-Apr-13 13:00:06

Dinkysmummy, not wanting to put a damper on you, and I know you are wanting to be nice of course, but do be aware that quite a lot of people on this forum really hate "Welcome to Holland" with quite a passion! Some may be along shortly to tell you this (or they may not!). (Persionally, I don't mind it, and I think it has been helpful to a number of people).

FreshWest Mon 22-Apr-13 13:05:32

belsbels I am totally in awe that you threw a birthday party. Dd was 5this year and I have not yet been that brave.
I agree that you need to find your own version of "normal", I had great images when dd was little that she would do gym and ballet and all those things. I have had to adjust my thinking but she does horse riding with a part of the Rda and we manage swimming and going for walks (nowhere near water unless its the height of summer!)
You don't mention other dc but we only have dd so not quite so difficult in some respects.
Just be kind to yourself and learn not to expect too much from ds, then when it goes well, have a little smile to yourself!
It's hard no doubt and I still find myself comparing dd, but I try not to. No good comes of it.

troutsprout Mon 22-Apr-13 13:06:08

L

troutsprout Mon 22-Apr-13 13:12:52

Lol ... I prefer the one we made up on a silly thread 'Welcome to Aldi' I think it was called smile

Op... I think you stop comparing after a bit. They become so very obviously different from their peers that it is irrelevant to compare. It just becomes about them rather than them compared to...
Also as they get older you don't have that school socialising thing going on...so less opportunity to do so anyway .
Ds's friends are all a bit quirky...( some dx some not).
It will get easier

Sunnymeg Mon 22-Apr-13 13:29:36

To be honest I don't think you can ever stop compairing and being a bit down or wistful when you see him with others.. All parents compare though, it goes with the territory. DS has Aspergers and his Aspergers is as much a part of him as his blue eyes and dimples. I can't imagine him being any other way.

We found it easier to take DS out for a treat day with a couple of friends than have a birthday party from the age of six or seven, his anxiety didn't help anyone at party time. We would take DS on a few days out throughout the year and then ask him which one he wanted to go back to as his birthday treat. We found if he had been somewhere before he was less stressed and able to cope with other children better.

Belsbels Mon 22-Apr-13 14:24:23

Thank you all for your responses.

I did debate whether to have a party or not. He doesn’t get invited to play dates or other parties sad so it is not something I have to cope with very often, so I thought I would see how it went. It does reinforce how different DS is though in a room of his peers. He tries to interact with other children but ends up either being too physical or sitting on top of them.

I guess part of me wants to do “normal” things with DS, although I am beginning to see this is perhaps more for me than for him. In some ways it might be easier if I let this go and accepted and embraced his differences more. As the theDudesmummy and FreshWest suggest, I need to find our normal and enjoy what we can do as a family, rather than what we find hard. I am not quite there yet.

Thank you for posting the poem Dinkysmummy, it is useful food for thought. I am very intrigued to read “Welcome to Aldi” now as well!

The idea of a treat day is a good one, and I particular like the idea of going back somewhere we have been before. DS finds repeat visits much easier, so therefore we all do. I wonder if this might work for Christmas too, which has been a disaster for the last 3 years wink.

It is very good to hear things get better, although I am sure there will be new and different challenges to cope with.

HotheadPaisan Mon 22-Apr-13 14:41:05

Message withdrawn at poster's request.

lougle Mon 22-Apr-13 19:11:44

I'm not too keen on the Welcome to Holland poem describing life with children with SN, tbh. When I was a student nurse I did a placement on a burns unit, saw the poem on the wall and thought it was deeply inspirational. These things often are to people who think they know what it's like.

The reality is that the hard stuff stays hard. The rawness fades, though.

cansu Mon 22-Apr-13 20:01:39

I agree really with lougle. It still hurts but is less raw. I also try to protect myself by picking carefully who I talk to about dc and also where we go. I am probably not a great person to ask as I don't know that I have ever really got over it. I have one ds with very severe ASD and a dd who is more sociable but still only communicates at a one word level. I tend to not go to things I know will upset me. Dd gets lots of birthday invites but I really only attend things like soft play where she can be herself more. Party games and sit down food are a nightmare and I can't face being embarrassed and upset when she can't cope with them. This is probably a bit pathetic but I know my limitations! I do feel for you though, it is far from easy to know what is best.

cansu Mon 22-Apr-13 20:03:02

Agree as well on welcome to Holland. I think I possibly quite liked it to start with but as my life has continued to be bloody hard and unfair I got more and more pissed off with it. That said I can see how if you have a more positive mind set than me you might like it!

Dinkysmummy Mon 22-Apr-13 20:12:38

Sorry if I inadvertently upset anyone with the holland poem. My friend gave it to me when I first came out of denial about dinky even though she hasn't got a dx yet she has been classified as special needs by school, GP, and everyone is so sure she will definitely get a dx.
I think it helped me get perspective, but then I am at the begininning of the journey..

Sorry blush

cansu Mon 22-Apr-13 20:17:31

Dinky you have nothing to be sorry about! It is just personal preference. I am sure we don't all like the same books, music etc. It is a poem that expresses a very positive view of having a child with a disability. We are all at different stages in dealing with our dc disability.

lougle Mon 22-Apr-13 20:17:58

Don't apologise smile - if it's helpful to you, then it's doing its job. I find it hard to balance my negative feelings with those of guilt that I feel negatively, and the fact that I have a DD who is amazing and wouldn't be who she is without her brain condition.

It also hurts like hell when I see her try to hold a pen to try and write her name, and the sheer effort and determination to write a 6 letter name where 4 of the letters are simply straight lines sad

Jacksterbear Mon 22-Apr-13 20:35:48

Hi Belsbels. You were on my thread earlier and I thought I'd return the support and empathy on yours! This sounds v familiar. My ds had his 6th birthday in jan. We knew he was bad with birthday parties but when we asked him what he wanted to do he said he did want one. So we just invited a few of his classmates to our house for tea, all very low key and we thought he might be ok in his own house. But he spent the whole time hiding under the covers in his bed upstairs. And almost the worst bit was that none of the other children even noticed, but carried on happily playing and eating tea without him sad.

I think any "big days", eg sports days, nativity plays etc, are always going to be a big ordeal tbh.

As I think you said earlier in my thread, I'm not in a position to offer experience or wisdom from further down the line but just wanted to offer my shared experience and empathy! smile

AgnesDiPesto Mon 22-Apr-13 21:34:30

It gets easier but for me birthdays are always hard. They are a milestone and when you have a child who does not meet milestones then those are the hardest days. Birthdays are days when I think when ds1 / ds2 was 6 they could do x. And I look at ds3 and see his difficulties sharper on that day than on any other. DS was diagnosed at 2 and is now 6. I think they will always be tinged with sadness about how much more difficult his life is.

dietstartstmoz Mon 22-Apr-13 21:59:43

belsbels it is so hard isnt it. Dont worry too much about the birthday, as others have said when your DS gets older he will be able to tell you what he wants. Our DS2 has HFA and will be 6 in August. He has no friends and does not get invited to parties. I have asked him if he wants a party this yr (he has never had a 'proper' party) he doesnt. He does not like other parties and if he was invited he wouldnt want to go anyway. He couldnt do games and he cannot cope with singing happy birthday, he will freak out make noises and run from the room. Closer to the day I will ask him what he wants to but we will probably choose a family day out. But I dont know when it gets easier.. As others have said it is not quite as raw as it was, but it is still like so hard some days, in the playground seeing his classmates and I have a nephew the same age. In some ways he appears to be more autistic as he gets older as his peers are growing up and getting into older things and DS2 isnt doing that. You need to put on your rhino skin and battle on I think but its bloody difficult.

Strongecoffeeismydrug Mon 22-Apr-13 22:24:49

Birthdays are always an emotional time for me,we gave up even thinking about a party for DS years ago and always opt for a day at the beach instead as that's what makes him happy.
I think I find his birthday hard because it highlights just how different he is to his peers and with him having a Older NT sister I remember how we celebrated her birthdays and its just so different .

SallyBear Tue 23-Apr-13 05:44:46

DS4 was 6 in March. We had presents in the morning, he went to school (he goes to a Special School) and his teachers threw him a birthday tea and Brad (who does music with the school) came with his guitar and sang songs for him and his 6 classmates. Then he came home had a go in his new trike and various relatives turned up with more presents and to have birthday cake. That weekend we took him on a train.

My point is that it was a special day because it was low key and enough for him to cope with. A party would have been a disaster. I've seen that with other friends who have DC on the spectrum. They just can't cope with the build up, the change, the noise, the excitement etc.

Oh and very sorry Dinkysmummy - A loather of Holland too. Ever since 1999 when DD was in SCBU for months. Probably because I found it a bit wishy washy! smile

dietstartstmoz Tue 23-Apr-13 07:03:48

I found this on a MNSN thread from 2004, thanks to Davros who posted it then. I thought I'd share it.

WELCOME TO BEIRUT

(A response, with respect, to Welcome to Holland)

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad.

One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them. They overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this?

This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM." There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" "A good smack is all HE needs to straighten up".

Your adrenaline races as the clock ticks away your child’s chances of "recovery".

You sure as heck didn't sign up for this and you want out NOW! God has over estimated your abilities. Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well you weren't caught too often. Hey! you've never even heard of autism before. You look around you everything looks the same, but different.

Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon.

You feel like a lab rat dropped into a maze. Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed. There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some of the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop an odd sense of humor.

Every so often you get hit by a bullet or a bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick to the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the
phone while you are on hold with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You’re exhausted because your child doesn't sleep. And yet, hope springs eternal. Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along.

Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with the respect and caring that any child deserves. There will be people sent into your life who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and it is awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share an odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal.

Susan F. Rzucidlo

CouthySaysEatChoccyEggs Tue 23-Apr-13 07:35:44

Welcome to Beirut is far more 'me'. Too cynical after 15 years...

I did like Welcome to Holland the first time I read it though. But by the eleventy millionth time I had been emailed it by well meaning friends, not so much...

dietstartstmoz Tue 23-Apr-13 07:42:31

Yes its more like me now as well. I am now bitter and twisted against ASD and how it affects my lovely boy

ouryve Tue 23-Apr-13 09:49:09

You know, DS1 has had his diagnosis for 6 year, now, and it still causes a pang when i see NT children doing NT things. We've never dared plan a party for him because he loves going to them - but hangs around on the periphery until the food is served, avoiding the other kids and any activities and then asks to leave.

I still get pangs that I have to coach him home safely, reminding him to wait at every single road, sometimes grabbing his hands because I know he's about to bolt, regardless of whether the road is clear, arguing with him about which way we're walking etc, while other kids in his class walk home completely by theirselves. It's an extra large pang because I can't chase him if he does bolt, or lift him if he does the jelly legs thing and refuses to budge, because even if he wasn't too heavy for me (he's 5 stone and I have HMS), I have at least one hand full of DS2's safety harness - DS2 is 7 next week. DS2 has had his diagnosis for almost 5 years and i still get pangs at his lack of speech and the fact that he's still in nappies.

Of course, I love them both and they're adorable boys (most of the time!) but there's a bit of me that's always going to feel quite raw and sore about the deal they have in life.

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