# How the hell do you deal...



## aliss

When you're reading stuff like "what my 18 month does!!!" and they above and beyond what your 4 year old can do :cry:

I'm debating leaving B&B because I find it ever more depressing each time. I know he's different, but it still hurts.

Not to mention now I'm starting to get a lot of stares and "uhhhh" comments in public now that it's blaring obvious :shrug: Is this really how he is going to live the rest of his life? With people freaking out the moment he opens his mouth?


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## Foogirl

I just don't read them. The ones that bother me are the boasting threads pretending to be concern. "My 6 month old had just run the 100m in ten seconds, I'm worried because it surely isn't normal" :dohh:

And yes, unfortunately this is how it is going to be for your wee man. And for you. You will never be able to change other people but what you can do is find your own way of dealing with it, and equip him to deal with it himself in the future. I tell Abby children stare because they are envious they want a walking frame too. I tell her grown ups stare because they cannot believe how beautiful she is. I tell her that no matter how many people stare at her she should just ignore it and keep walking. And my own strategy is to make a point of staring hard back at them til they look away. And ranting about it on Facebook!

I did spend a lot of time trying to work out how to change people and what to do about the things she can't do. Instead we now just focus on what she can do, and how good things are. It has been a great help to me.


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## Yellow500

Don't leave!!

I've been using this site for a long time on and off (even though I have a new user name as I forgot my old log in details and email address :dohh: ) and I know exactly what you mean but the support here is great too.

When my son was very small I used to avoid other mothers. I hated mother and toddler groups and felt sick for a long time when I came on here. Everyone brags about their children and it's natural but its horrible when your child can't do those things. What is worse is when you don't know why your child can't and you're defending yourself while you feel other parents are looking down at you. I can't count the number of times I tried to mingle but just left feeling close to tears as people came up with their pity looks and helpful suggestions.

On here though at least there is support from people who understand and have been there.

Being a mother of a special needs child is really isolating. You don't feel like you have much in common with anyone else so it's good to find people who you can talk to.

I've finally accepted (for the most part) that my son can't do some of the things others can and it no longer gets me down that he isn't the same. I pay no attention to others bragging anymore because I know it doesn't matter. It did take me a long time to get to that point though and I'm sure you will get there too. :hugs:


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## sam2eb

:hugs:

It's so shit isn't it. I try and avoid most of those sort of threads just coz I know it'll piss me off. Same with the 'my kid is 9 months and can only say 50 words, are they behind? ' threads. 

I think what the others are saying is important. Focus on the things he can do. My son has autism and moderate learning difficulties (possibly adhd too). Yes he might only be learning how to write his name now but he's improving all the time and I'm so proud of that :) I think how far he's came since he was little and I just smile. 

In public when people ask him a question and he parrots back what they have said or if he starts flapping etc I just tell them that he can't answer because he has autism. Most people are eager to actually learn a bit about it. That or they move quickly on. I used to try and hide his autism when we were out but I found that once I stopped doing that it was much easier on us. 

:hugs:


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## kit10grl

I feel the same way about those threads. I always manage to scroll past for a day or two then cave in and read them. Then i always feel crappy. Its hard to read them, its hard in that situation in real life too.


Sorry your feeling this way.


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## sequeena

I grin and bear it, it's all that I can do. My OH isn't bothered by at it at all. I wish I had the same attitude. Part of me rejoices in what others can do but a big part of me feels bitter, jealous and upset. My littlest cousin will be 2 next week. She is so above and beyond in her development compared to Thomas. I think it's the fact they're only 8 months apart that gets to me the most. My family adore him and never compare them but I cannot help it and it upsets me so much.

I really do despise those threads but also cannot help but read them... the same with the 'is my child behind' threads. Some of them make me want to punch through my computer as the worries are so completely ridiculous. I know others are entitled to worry about their childs development but seriously not walking before the age of one is not a concern AT ALL. I chime in and try to be helpful and explain how my son is with his development and most of the time I am ignored. Hey, you're the one who wanted the damn advice this is what it's like to have a delayed child.

Sorry, went off on a bit of a rant there. Please don't leave Aliss xx


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## AP

I just dont go there other than moderating purposes. 
I had the same issues with Alex when she was growing up with Baby Club. I can't win :shrug: but times a healer, and the more it goes on the more I can accept how unjust it feels.

However I am under no doubt that no toddler in there rocks it to Lady Gaga better than Alex :rofl:


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## Peanut78

Don't go Aliss!!! :hugs::hugs::hugs:

I totally know what you mean - it sucks :nope: I stay away from those threads as much as possible. Sometimes I comment on the "2 and not talking" thread, but everytime I see the title in crop up I think "try nearly 5 and not talking". I don't go into baby club or toddler forums anymore at all...

I'm also going through the sentiments of "is this what the future holds?" as I see his challenges becoming greater as we enter the school environment and the sever speech delay becomes more apparent is making him fall farther and farther behind. :nope:

:hugs::hugs::hugs:


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## AP

> Sometimes I comment on the "2 and not talking" thread, but everytime I see the title in crop up I think "try nearly 5 and not talking".

Oh god yeah :blush:


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## aliss

Thanks girls. Sad to see that so many of you experience it too. I'm just not doing well these days. I am by myself these days with no therapy or support for him. I might have to move into a hotel long term to get him services in another province as this house isn't selling. I find myself being angry all the time. Millions of dollars spent here to ban women wearing hijabs but no money for disabilities. I am so disgusted with this place.


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## gezma

I totally understand how you are feeling, as we are in exactly the same situation. We're at the 3.5 years and not talking stage, not one single word. My son has a genetic disorder. But you aren't alone. If you would like to pm me, then please feel free x


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## Peanut78

That is really tough hun :hugs::hugs::hugs:

We're not in quite the same situation in that we have a good therapy team at the moment, but we are really struggling with the school environment and support to the point where we are likely moving country (there are other factors linked to this as well, but the school situation is the major factor). 

I hope the house sells soon or that you are able to find an interim solution. Here for you in the meantime!!! :hugs::hugs::hugs:


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## Eternal

Sam isn't particularly behind (although it's starting to get noticeable) and up until 2 he was advanced for his age, he regressed some what but overall he isn't noticeably different in that way. 

However, I get really sad when I see other kids doing things like pantos, seeing santa, indoor play, birthday parties, because Sam cannot handle any of those things. Little things like my neighbour is a new mum and keeps inviting me over with the kids and I just cannot, in fairness even without Sam the twins can destroy a room in seconds, lol, but Sam just cannot handle changes and his sensory issues are so extreme it's impossible to take him places.


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## lilesMom

hugs aliss xx
def hurts, i try and keep in my head moving forward is great at any pace.
its tougher some days than others
i hve long running threads im on, we all got preg around same time.
its tough, they r standing and cruising now,
ive lo in his stander but he is getting stronger. 
he is my littke rock and i wouldnt trade him for the world
id just love to take away his struggles but.............
i celebrate anything he can
sometimes when i brag about new things he does i do get pity looks, 
i dont care if he is months later than others, 
its more speacial cos he overcame lots to get here. 
hope ur house sellls, sorry u cant get local help.
i may hve to move later too if lo cant mainstream school xxx


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## mummy3

Oh I hear you :(:hugs: I hope you can move to get better services, it really should be something easily accesible for any child needing the help anywhere.


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## sethsmummy

:hugs: hun.. when things like that get to me i sit and think to myself.. well... if he could do all those things.. then he wouldnt be who he is. Dh and I have a friend with a very bright little boy.. he is 2 and his mum always posts videos and status's on fb with him doing different things... writing his name, having a full blown proper conversation etc and i have to admitt sometimes i get jelous of those kind of things.. and im like "i wish seth could do that" .. but then i think well.. he woulldnt be my special boy if he could. 

I used to avoid those 2 and not talking threads.. but now i find that my experience can help others realise their child is normal. Seth has only just started saying sentences at almost 4 and a half. not everything is understandable and you have to spend A LOT of time with him to know what hes saying. :hugs: xxx


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## JASMAK

It will get easier! I used to get so devastated by reading things or hear people talking about what their kids can do. My three year old has long surpassed my nine year old daughter with speech, social and play skills!!! It is hard not to notice! You will! But, it will get easier. The wound will slowly start to heal. It will.

I also found grieving and acknowledging the disappointment and hurt. We don't always have to be strong and happy and effing 'thankful'. Let yourself be angry, hurt, and that is slowly how I have and continue to heal.


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## aliss

Hi ladies, thank you for your support. Oh and I are really struggling these days but trying to get through it. They lost his application, they denied us disability because he is still on the waiting list, our house isn't selling despite a 20k price hit (and this move will cost 20k). Its just.... What next? Farkkkkk. I wish I never left British Columbia. 

And I have no respite. Oh's family won't help anymore. Apparently pretentious snobs are embarrassed of my handicapped kid. Wont miss that.


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## aliss

But on the plus side he started saying "you" and "poo" this week!!! If only he could sense his bowels first I'd be on easy street! He will be 4 nextnmonth


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## Shezza84uk

Hang in there Aliss, my daughter was non verbal until 4.5 she started using single words at 5 she is now using sentences in context although still struggle with understanding complex words and commands.

She potty trained at 5, this was very difficult for her as she had struggled to understand why she needed to sit on the potty I don't know if you have Makaton signs available where you are but you can find resources online I bought the pack and taught myself which I then taught my daughter this helped open our communication with each other, she still uses signs now with words that she struggles to pronounce despite being verbal now. 

I hope you access the help you need soon X


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## JASMAK

aliss said:


> Hi ladies, thank you for your support. Oh and I are really struggling these days but trying to get through it. They lost his application, they denied us disability because he is still on the waiting list, our house isn't selling despite a 20k price hit (and this move will cost 20k). Its just.... What next? Farkkkkk. I wish I never left British Columbia.
> 
> And I have no respite. Oh's family won't help anymore. Apparently pretentious snobs are embarrassed of my handicapped kid. Wont miss that.

Sounds like you have alot going on right now! Hang in there!!!:hugs:


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## smileyfaces

:hugs: yes those threads bother me too!


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## AP

Shezza I just want to say thank you, your experience us very like ours. Aliss I reeeeally recommend Makaton, do you have it there, or similar?


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## alibaba24

i know how you guys feel . comparing children is the most soul destroying thing. My DD is not creative in the least and i see other kids drawing pictures and having little tea parties etc it makes me sad.... but then i guess those kids cant count to over 100 :rofl:

i always try and remind myself theres always someone out there struggling more than us and try to be grateful. so not easy though. i avoid the preschool board as much as poss x


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## RachA

I try to avoid the threads but quite often end up reading them and wishing I hadn't. 

It's so tough-I've stopped seeing one if my best friends because her son who's the same age is so much more advanced and it makes me feel like I'm useless even though I know Esther's delay isn't my fault. I've arranged to meet up with a jinx of friend in a couple of weeks time and I've planned if for when Esther's at Playschool so that I don't have to see he 3 year old trying to play with my 4 1/2 year old who doesn't have a clue how to play and won't talk to her either!! 

You know you've got a whole load of support here so don't leave. Sometimes it's harder than others and it sounds liked you are going through a lot at the moment. I have times when I couldn't give a monkies what other people think and then I have other times when I sit there and just want my daughter to be 'normal' because I don't want to deal with inane questions etc. hang on in there :)


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## Tiff

aliss said:


> Hi ladies, thank you for your support. Oh and I are really struggling these days but trying to get through it. They lost his application, they denied us disability because he is still on the waiting list, our house isn't selling despite a 20k price hit (and this move will cost 20k). Its just.... What next? Farkkkkk. I wish I never left British Columbia.
> 
> And I have no respite. Oh's family won't help anymore. Apparently pretentious snobs are embarrassed of my handicapped kid. Wont miss that.


I hear you on every front! I'm in Ontario but the waitlists for my area are INSANE. 

And once Claire got her diagnosis, MIL (who was desperately wanting to have her overnight for like 3 nights at a time) decided that Claire was "too much" and will take her once a month... if that. Which is fine, it is her loss.

But it is tough! We try to mix with friends who have kiddos the same age but Claire is just so different and if they either don't understand Autism or haven't grown up with her (therefore used to her) it doesn't work. It breaks my heart. All I see is this amazing little girl, all they see are the weird behaviours (well, weird to them. Normal for us) and back away. 

I can't believe they lost your application!!! WTF?


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## Tiff

Unfortunately I haven't heard of Makaton until you started doing it Sandi. :nope: Claire is verbal now, but if you splice what she says which is echoaliac vs her actual words she doesn't say much on her own. You can tell when she switches from perfect english (scripted) to very baby-babble (her words).

I may look up Makaton, but I'm not sure it'd work for her. :nope:


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## Midnight_Fairy

You do get used to it. My son is 10 now and honestly it doesn't phase me. He is him :)


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## AP

Tiff said:


> Unfortunately I haven't heard of Makaton until you started doing it Sandi. :nope: Claire is verbal now, but if you splice what she says which is echoaliac vs her actual words she doesn't say much on her own. You can tell when she switches from perfect english (scripted) to very baby-babble (her words).
> 
> I may look up Makaton, but I'm not sure it'd work for her. :nope:

You'd be surprised. i know our Makaton is based on BSL but if it was something you chose to do just at home between yourselves there would be no harm. I didnt think it would work, and I hated the idea of having to learn what was essentially a new language but omg, it paid off.


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## aliss

Thanks ladies. That Makaton looks quite interesting thank you, but I have a good update.

We finally found a private preschool academy that was willing to take him. The catch is a huge one, it means I have to drive him there & back twice a day (4x) and it is 30 minutes from the home so yay... which is about 80km driving a day, 5 days a week. And, total, it's half of OH's wages. But he gets an inclusive preschool AND a 1:1 behavioural therapist several hours a week (who also spends time in the class), he is very well qualified and it's a bilingual school but mostly English which is nice. I have no idea how long I am going to continue to pay $1600 (no typo) a month but we'll see how long we can do this.

Meanwhile we will be eating mac n cheese for a bit lol. He starts Monday and is begging to go already lol

The social worker came by too and said she couldn't help him as he didn't speak French. yay.


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## sam2eb

It's great you have found somewhere for him :) Yikes at the cost tho!!!

My son really came on brilliantly when he started school x


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## maisie78

Glad you have found somewhere but wow that is some cost! Have a look at a UK blog called 'agirlcalledjack'. She was feeding her and her son on £10 a week and she posts some fab very low cost meals.

That social worker though!...just grrr for you xx


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