Do you feel alone and isolated with your special needs child?

[Foxymoron]

I feel cruddy right now. Totally alone and sad. I don't have a network of friends, not via school, not via playgroup. It's just all too bloody hard when your son is so different to the other kids. I'd love to meet up with other mums for coffee, but it's just not practical for me to take my son to a shopping centre and not have to run around after him the whole time. He's a sweet little thing but going out can be a nightmare :( My two daughters could benefit from me building up a circle of friends, and that makes me even more sad that they are missing out.
Anyway, enough ranting.. I'm gonna cry quietly into my cup of tea and then take myself off to bed... Thank Goodness for Bubhub!

[Mother Duck]

Dear beautiful Keara - What you are saying makes such perfect sense. I wish I lived near you as I wouldn't care if your lad ran a muck I would go with you on outings anyway.

See the thing is it is such hard work because there are so few people that are prepared to take the time to leave their comfort zone. And a special needs child is outside most peoples comfort zones.

The good news?? Your special needs boy is 'special' - that is to say he has created parameters for you that you would not have otherwise had, through him you will meet and become ever so close to 'special' people - REAL people with amazing hearts and strong wisdom. These people will either be this way just by their genuine nature or perhaps because like you they have had to learn to understand the world in just that little bit of a different spectrum.

Either way - these will be the diamonds in your sky and the experiences that you have with them will be priceless.

While it feels lonely now, just try and visulaise this sort of friendship - It will definately happen over time.

What age? And what needs does your bubba boo have?

Do you teach sign with him - maybe you can link up with others this way.

Where in Vic are you??

Hope this helps, I am going to go now and get a cup of tea to have with you!

LOTS of love

[Imogensmum]

I wish i was in Vic to share a coffee with you, It is such a terrible thing lonliness!! But smile and breathe deep and remember that we all love you- and vietual coffee catchups are nearly as good as the real thing!!!

Maybe try taking your little ones to a park???- I have met two very lovely mums by doing this (i too was feeling lonely)- and although Imy is yet to get to the running amok stage- these women have older children and it is much easier to meet them in a large unconfined space where the children can play safely while they get to chat!!!

((((((hugs)))))) I hope that helps a little bit!

[Foxymoron]

Thank you lovely ladies for your messages of support.
My DS is 5, he has the understanding of about a 3 year old, he has autism but not classic autism. He is actually quite outgoing for someone with his diagnosis. (he seems very trusting of other adults) If I could take him to a park I would :) But he is a danger to himself and heads straight for the road. I loose him in shopping centres if he isn't in a pram. I take him to play centres, sometimes but he gets overwhelmed and upset or he'll fixate on something and be unable to share or take turns with other children. I think it's because autistic children look 'normal' that people find it hard to understand or make allowances for their behaviour... We are still waiting for early intervention services.... so far they have offered us the use of a toy library, which is no great help. He goes to speech therapy once per fortnight as that's all I can afford... we're still 'waiting' to get term by term speech therapy via the public system. I'm a member of an organisation for kids with special needs, and I feel like a tool when I read the stories of people with more to deal with than me. It doesn't change the fact that life is different for us, but it makes me feel ungrateful... know what I mean?

**sigh** I feel a lot better today :)

[Mother Duck]

I've been thinking of you all day - sending you happy vibes!

Don't compare yourself with other parents with special needs kids. It is impossible.

If you lost your leg at the knee you would feel just as crap as if you lost both legs at the knee!

Can you put up a notice locally to start a 'autism' kids social group?

You may be surprised at how many others wish they knew someone just like you.

So glad you feel better - I am going to stop with my lectures to you now!

Just know that you can pm me anytime that you want to talk - sometimes it just helps to have someone to listen!

Lots of Love

[veve]

hey Keara ..

I wish I lived near you too... I ADORE kids with ASD!!! (its mainstream students that I have trouble being patient with!!! :D ) - I agree with you though - that because kids with Autism dont LOOK different... society expects a lot from them (or automatically looks at you as if you are a bad parent for not controlling them!!)

The only thing I can think of to solve your problem... is that the parents of the junior kids at my school started a 'parents group' themselves. They meet once a month to do something WHILE THE KIDS ARE IN SCHOOL - e..g movies... coffee... shopping etc - it really is a life line for them (it is for THEM - not the kids!!:) ) .. and they spend time with people who understand their lifestyle. They ring each other for support .. and help each other out with their kids where possible.

I know that some parents in the upper school have said that they wished that they had that kind of group years ago - the parent co-ordinator of the group just put a notice in the school newsletter???

the only other thing I could think of - is to maybe go to a few P & C meetings??? (if you can get your little man looked after for the meeting) - it is another way to contact other parents???

anyways - I hope this helps :o
DONT EVER FEEL THAT YOU ARE BEING UNGRATEFUL - take absolutely everything offered too you (speech or toy libraries) - otherwise it will probably not be offered again....
having a child with special needs is a very very different lifestyle to having other children- different expectations and different responsibilities...


((big hugs))
xxx

[Foxymoron]

thanks again :)

I feel much better.... the suggestions of starting a special needs playgroup is tempting, but once I have number 4 and I'm trying to keep up with uni it may get difficult.

Mrs Casper :) I'll definately take you up on that offer of coffee!

I do hope when I am qualified to specialize in childrens health.. mainly those with additional needs.. so in the long run I may end up running some kind of group, who knows!

[veve]

Hey :)

I hope my original post wasn't too nauseatingly perky - I just miss my kids (students) - since getting very pregnant I've stopped teaching and doing respite care... it has left a big hole... I"ve worked every holiday and most weekends for 6 years - and now I'm sitting at home waiting for bubs!!!

I've heard from a few parents that funding evaporates if not taken when offered... Disability Services Queensland (dont know what it is called in the other states) - HAS funding - but often it isn't offered until the parent is absolutely at breaking point... which really is rough.. when these families try to do the absolute best by their kids...

anyways- thinking of you Keara (and Mrs C!) - hope you feel perkier soon..

((hugs))
xx

[Lunar]

Hi all, I'm new here and thought I'd intr myself :)
I'm Kris, mum to Emily who is a 3 1/2 yo ball of energy! She doesn't stop all day and is so hypo! Emily was born with Trisomy 21 also known as Down Syndrome. She also has some characteristics of austism (which is very common with children who have DS) I am also 24weeks pregnant with another daughter. We are so excited, I don;t think Emily really understands that there is REALLY a baby in mummy's tummy, she points and says baby and kisses my tummy but I think she just does that cos I ask her to :rolleyes: Oh well it's still nice :)
Would love to hear more about you and your children.
Kris.

*An extra little chromosome that's all it is, you see. Where all of you were born with 2, my angel was born with 3.*

[Mother Duck]

I hope my original post wasn't too nauseatingly perky

Ah Veve - never in a million years - got you another pressie today, I keep following your posts just to check if you are in one or two pieces!

[veve]

Ah Veve - never in a million years - got you another pressie today, I keep following your posts just to check if you are in one or two pieces!


oh Jess- you are SUCH a sweetheart.. I have been waiting to see you update your preggy diary!!!!! keep us informed!!

lots of sticky dust for pingu!!
xxxx

[Mother Duck]

:) :) :)

Sorry Keara - don't mind us getting all touchy feely on your thread!

Rather off the topic :o

[will&samsmum]

Hi Keara....I also have a special needs child...his name is William and he has a rare brain condition........just thought you might benefit from the following poem that was given to me by a very caring person when William was first diagnosed at ten weeks of age...he is 17 months old now.......this poem has helped me through some very dark moments................................


HEAVENS VERY SPECIAL CHILD

A meeting was held quite far from earth
It was time again for another birth
Said the Angels to the Lord above
This special child will need much love
He might require extra care
From the folks he meets way down there
So lets be careful where he's sent
We want his life to be content
Please Lord, find the mother who will do
A very special job for you
She will not relise it straight away
The leading role she's asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon she'll know the privaledge given
In caring for this gift from Heaven
Her precious charge so meek and mild
Is Heavens very special child

:) Take Care
Emma

[will&samsmum]

P.S (SPECIAL CHILDREN ARE GIVEN TO SPECIAL MOTHERS)

Emma ;)

[Mother Duck]

Wow - that poem is amazing! Beautiful women you.