Please help me I need to talk to someone regarding ASD

[AP]

OP your first few posts in this thread have described my daughter to an absolute T. We havent been diagnosed anything at the moment as she only turned 2 corrected age this month, but it all made so much sense to me and I just dont know how to speak up about it, I simpily dont understand a thing. I have book marked this for my husband to see.

 

[Midnight_Fairy]

Hugs Sandi

You know its all so hard to get head around, especially when you see something that makes sense! I remember seeing something on line then phoning my mum and reading it out and we both didn't speak for about 5mins, It was 100% describing Matthew!

At first I felt relieved that actually there is a name for what he does but over time I did feel a bit over whelmed by it all. Even now, he is 7 and I still learn new phases and new things he does!

The best way to go about it is to talk to HV (if you get on with HV?!) If not, I would go the GP route and ask to see peadiactrican. If you already see a pead, I would perhaps mention that you would like to talk to them about some behaviours you have noticed. It was a lengthy process for us because in some ways Matthew is not far into the spectrum but in other ways he is?- does that make sense?

For me, like I have said before. I didn't need the label for anything but yes diagnosis has made life easier in some respects. I think when you know for sure one way or another you can then move onto the next stage. The diagnosis was one stage and now we have moved on to trying to make day to day life easier. Such simple changes and visuals make like much more smoother.

Well like I said Matthew was about 2yrs 6mths when I took action, it was not even overly obvious to anyone else at this stage and I did feel quite unsupported but we got their in the end You can message me any time, I always say to people I have kept all paper work if anyone ever wants to know what happened at "x" assessment etc.

Just remember feeling overwhelmed is entirely natural. I would say try not to become obsessive and analyse everything as that's what I did and it did kind of take over that stage of my life!

x

 

[Tommee]

Thanks ladies for taking the time to reply.

I'm so sorry that some of you are going through the same but it's reassuring to know that I'm not alone in all this.

I still can't get my head around it all every morning I wake up and think it was a bad dream. The HV is coming in 3 weeks time then that's when we'll get the referral. I still cry everyday for the DS I've lost will never have. I feel so bad for my DD who isn't even 3 months old yet and only seen a sad Mother as 2 days after she was born my much loved Dad passes away & now this with her brother.

I've not told any of my family I've lost the one person who I shared everything with my Dad although people have started looking at my DS as he's getting older now they expect more from him, I guess it was cute when he was younger the stimming noises, hand flapping non verbal now he's over 2 years it just looks odd to them. We get stares everytime we take him anywhere, sad thing is he loves the outdoors, park is his second home, I just fear so much for his future, I'm afraid of the bullies not just children, adults can be worse also his own family, sadly I don't have the best of families that's why I miss my Dad so much I now have no one apart from DH he is fantastic with DS.

Sorry for the down tone again, I wish I could see some light xx

 

[Midnight_Fairy]

Oh hun massive hugs. Try not to think to much of the future, my son was non verbal at 2 also and now he really does not stop talking lol xx

 

[MilosMommy7]

tommee- i know how that feeling goes. when they were young it was cute and "typical" of them. but once they should have outgrown those characteristics it becomes like you said, "odd".

 

[Midnight_Fairy]

I wouldnt worry to much about getting older, I think society is changing alot. My son is 7 now and I have got to the stage where I dont care what others think lol. If he kicks off in public or at the school, you know, if someone stares thats THEIR problem, not his! I think things have just changed in general, we now see more services for older people with autism and I think in next 10yrs this will change even more. xxx

 

[AP]

Whats the script with diagnosis. I heard that people wont even consider looking into it til at least 4

I read another thing last night and it was spot on.

 

[Midnight_Fairy]

well I went to HV at 2yrs 6mths (ish) and told her my concerns, I went behind the preschools back as they said that he was fine!. Anyway he got referred to peadiactrican and we saw her and speech therapist untill he was 4 and then he got referred to the autism assessment team at CAMHS (but the waiting lists was 18mths) so he didnt get diagnosed till 5 but I knew he had it all along.

The preschool eventually agreed and he had portage help and 1:1 funded help (portage organised this before diagnosis).

 

[AP]

Looks like I will have to put my faith in the team that are taking over from neonatal care this month. They will be there for all her needs and will correspond with speech therapy and the other things just now and preschool next year.

I know preemies have double the risk of having it too, it's hard to weigh up with Alex what is down to her brain bleed, age, prematurity or perhaps just personality.

I've learned not to focus on the what ifs, so time can only tell!

Thank you Midnight_Fairy xxxxxxxx

 

[Midnight_Fairy]

Hugs and good luck x

 

[Karlie06]

Hi I have a seven year old non verbal son with autism and other issues and the best advice I can give you is to take each day at a time. There will be good days and not so good days but you don't know what the future holds but It won't be as bad as you think. In a year or 2 you will be amazed at his advancements and be so proud of your child, so hang in there, it DOES get better

 

[JASMAK]

Just remember, no matter what the 'diagnosis' may be...he will ALWAYS be the same little boy, and you can work through this! My daughter was diagnosed with PDD-NOS at age 2, and now is considered 'Classic Autism'...it doesn't matter...she is still my little girl. Yes, she has to work harder, yes, there has been some very BIG bumps in the road...but, she is still my Makena. Nothing will ever change that. You will be OK. Hugs x

 

[Menelly]

Hi. First off, welcome to the family that no one wants to be in.

Second: Yes, he'll be bullied. I wish I could tell you otherwise, but I can't with a straight face. Bright side? Often us autistics don't REALIZE we're being bullied, and believe it or not, that often makes it much easier to deal with. I have some horrible bullying stories from childhood that I didn't realize what was happening till years later... and that made life much easier at the time.

Third: How he'll do in life depends on a great many things... how severe is he? What kind of early interventions can he get? How are you reacting as parents? (I've seen far too many parents induce live long anxieties and depressions from their behavior towards their child... please don't be one of them.) What kind of expectations do you have from your child?

My dad is autistic, was diagnosed in 1959. His doctor suggested they institutionalize him and move on with life, and my Oma refused. He's had the same stable job for 22 years, has been married to my stepmom for 18 years, raised two decent children (IMO! ) and has lived independently nearly his whole life.

I'm aspie. I'm happily married, one son already, another child on the way. I hold a job, pay my bills, etc. I have a small circle of friends I like, and I'm happy with life.

My 13 year old son is autistic. And I have every hope and dream of him doing the same as my dad and I. Might take him more work than it takes the average NT kid... but he can do it. I have faith!

Good luck to you!

 

[Midnight_Fairy]

^^ Thanks for your input. I hope this does not sound rude but not everyone with autism will or has been bullied. Times are changing and more awareness of autism is everywhere.

I didnt choose to be in the asd family but I would never ever change it, would never cure my son and I am glad I am in the autism family now. x

 

[Menelly]

^^ Thanks for your input. I hope this does not sound rude but not everyone with autism will or has been bullied. Times are changing and more awareness of autism is everywhere.

I didnt choose to be in the asd family but I would never ever change it, would never cure my son and I am glad I am in the autism family now. x

Well, in mainstream schools, I'm willing to bet 100% of kids are bullied. Not just people on the spectrum. Jr. High and High Schools (at least in the US!) are truly evil places where any level of non-conformity results in evil responses from fellow students.

So I'll stand by they'll get bullied. But so will the kid with red hair and freckles, the girl who matured faster and has big boobs by age 12, the person who knows too much about science, the kid with the accent, and the one not quite as good at tossing the football. Kids are evil little suckers sometimes, especially when adults aren't watching.

And it's good to have people who are happy to be in the family. Like I said, it's the one no one relishes joining, but those who can accept it and make peace with it are great allies to have!

 

[MilosMommy7]

the US is terrible when it comes to being bullied. there's atleast 1 in every school. so it's bound to happen at some point in life, NT or SN.

 

[TupeloHoney]

I grew up with Asperger's Syndrome and all I can tell you is that the mother often knows best. I actually had early speech, compared to even typical children, which isn't that uncommon with some children with ASD. But fixations, odd mannerisms, toe-walking, and poor eye-contact were all present at an early age. I prefered to play alone, most of the time, during which I would set up my doll house the exact same way, again and again. I often would ignore people when they called my name, or ignored what another person said and would ramble on about my own topic. Still, I gave hugs and kisses, and was just as loveable with my family as any other little girl.

In short, autism is different in every child. And, as I have written before, the mother usually knows best.

 

[Menelly]

You're lucky to have a good mom, Tupelo. (As I'm quite sure all the mom's on here are too.)

Mine so badly wanted me to be *anything* but Aspie that I spent a lot of time when young on various meds that didn't work, or in classes that frustrated the hell out of me.

I too talked really early (14 months), I think I was born knowing how to read (I remember reading Romeo & Juliet... at 2), still walk on my toes, and eye contact makes me feel like my bones are exploding. I just look at someone's left ear or eyebrow when they're talking to me, and it fakes it well enough.

And, even at 31 years old, if someone's trying to get my attention when I'm doing something else? Best of luck to you. I probably don't even hear you and if you touch me to try and "redirect"... well, have you ever seen a melt down in a 31 year old? It isn't really pretty. :/

 

[Midnight_Fairy]

wow it must be different in the US. I have never been bullied and I know schools take it VERY seriously. The school are a family so they are taught young not to bully. I am shocked its like that in america if thats correct? wow, maybe the UK does have a plus side!

 

[MilosMommy7]

the US is horrible when it comes to bullying. everywhere you turn to in the news there's anotehr story about a teen killing themself from being bullied.