Please help me I need to talk to someone regarding ASD

[Tommee]

Hi,

I never thought that I'd be posting in this section, I feel so alone

I have the most beautiful, wonderful DS who's just turned 2 he's my first child. I also have a 2 month old baby. I noticed that he's speech was very delayed he doesn't really say any clear words he waves bye and attempts to say it but it's not clear. Also he builds towers with he's building blocks and lines his blocks and straightens them if there out of line. He jumps up and down flapping his hands, walks on tip toes. Climbs all the time and is never still. He also makes lots of noises when were out and about like a mmmmmm sound.

Now for the positive he is so loving and puts out his arms for a cuddle, he will pull my face to him for a kiss. He gives eye contact with everyone, he loves people and other children and will join in with them. He loves going for walks in his stroller and the car, he always sits still throughout the whole time. He knows where the local park is and gets excited when we approach it and sad when we leave.

I know all this is ASD he had his 2 year assessment and the HV seemed concerned, something that I wasn't until her visit now I feel sick all the time and can't stop crying. I have no one apart from DH to talk to who is fantastic but I just don't know where we go from here? I feel such a failure is it something I've done? I'm scared what the future may hold for him, will he ever lead a normal life? Will he be bullied? Some children and adults can be so cruel I've seen it. Hopefully it's a long way off but what will happen when we die? I'm so afraid for him, I just can't stop crying I wish it was me and not him. I love him so much it's breaking my heart in two.

Sorry for the long post it may seem a bit mixed up it's just how I feel at the moment.

Thanks for reading.

 

[Ilovehim89]

my 2 year old son may have an ASD as well. His official evaluation is on Tuesday but two speech therapists and the lady that did his intake eval was concerned and he is so far behind. I know the feeling of loving your little boy so much and that your heart is breaking for him. My heart is breaking for my little boy everyday because he can't communicate and when i can't figure out what he wants/needs, we both get frustrated. me because I can't figure out what he wants and I feel bad and him because he can't communicate too well. My son makes that "mmmm" sound too, kind of like a weird humming sound right? My son does it a lot when he is over stimulated or when he is in a stressful environment and doesn't know what to do.

 

[Midnight_Fairy]

Hi hun what did the HV actually say? she is not qualified to diagnose so dont worry just yet! Its a very complex condition. My son has diagnosed autism, hes 7 now and I would say yes we have school stress and stuff and life may not be normal but its our life.

Read this:


Welcome To Holland
by
Emily Perl Kingsley


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.

 

[Tommee]

my 2 year old son may have an ASD as well. His official evaluation is on Tuesday but two speech therapists and the lady that did his intake eval was concerned and he is so far behind. I know the feeling of loving your little boy so much and that your heart is breaking for him. My heart is breaking for my little boy everyday because he can't communicate and when i can't figure out what he wants/needs, we both get frustrated. me because I can't figure out what he wants and I feel bad and him because he can't communicate too well. My son makes that "mmmm" sound too, kind of like a weird humming sound right? My son does it a lot when he is over stimulated or when he is in a stressful environment and doesn't know what to do.

Thanks for your reply. I'm totally fustrated aswell as I explain why he can't go out in the garden right now or why he shouldn't do this and he can't understand, he climbs so much on chairs and it's dangerous so I worry for his safety. It's like you can't reason with him, everything is funny to him, he just laughs if I get mad. How can you explain to him when he has no understanding? He's still not spoon feeding himself fully DH every night let's him have a turn until he gets fed up then starts flicking it around the room. I'm dreading potty training, will it ever happen?

Yes DS does that exact strange humming noise like whilst shopping which yes is a stressful environment for him, I guess I never thought of that, I've got so much to learn.

 

[Tommee]

The HV kept using phrases like 'Autism isn't the end if the world' 'there's worse things in life then Autism' 'Some children with ASD can attend mainstream school' these are some of what I heard I think I went into shock and switched off. I was then told not to worry, I've only spent every day, hour and minute worrying

I've done a lot of research and my DS ticks so many boxes, I was ignorant to ASD beforehand and thought well he gives us all eye contact so he can't be? That's something else she asked before she left.

The HV is returning for another assessment which she said is just protocol then he'll get a referral to the Hospital, they don't see children until nearer the 3 year stage so we'll have a long wait.

Thanks for the letter/quote. I'll print it to share with DH.

 

[Midnight_Fairy]

I think you HV has been unprofessional. She should not have been throwing any statements at you. You need to have a proper assessment for ASD. I feel like she has been a bit out of line. I hope it goes ok though. Its a different path to life but its one you get used to fast. My son goes to mainstream school, he is very clever and he has lots of friends. Some things are difficult but not everything is bad xxx

 

[Tommee]

I think you HV has been unprofessional. She should not have been throwing any statements at you. You need to have a proper assessment for ASD. I feel like she has been a bit out of line. I hope it goes ok though. Its a different path to life but its one you get used to fast. My son goes to mainstream school, he is very clever and he has lots of friends. Some things are difficult but not everything is bad xxx

Yes thinking more clearly now she has hasn't she, I mean a Doctor wouldn't say if he suspected cancer 'well at least the survival rate for cancer is high' he'd refer you. It does feel like I've been left in the ocean without a life jacket.

It could be months until a proper assessment so as DS is only 26 months how to cope with it all? DH said since the HV visit I'm looking for every trait and putting everything down to ASD. I'm not allowing for his typical 2 year old ways.

I just wish I was as ignorant as last week.

Your son sounds fantastic I only can hope for the same for mine. Xx

 

[Midnight_Fairy]

I was the same hun, I had an inkling from about 2yrs and he was diagnosed at 5 so yes all that time was wondering what if and felt like I could not move on until diagnosis.

The thing is, he is still your boy, a diagnosis will not change him. Dont be scared, you will learn every single day, I am still learning about it all now. Its hard to get head around and now and then I wont lie, I feel a bit wobbly but I have to remember to take each day at a time!

He makes me so proud with every little thing he does and he will always be my beautiful boy. It does help to speak to like minded people but dont worry yourself to much.

I cant really be much help as even now I still search hours online but actually I have made loads of friends and some of the people even have asd are some of the the most inspirational people I have met.

If you feel like you still need to search, contact the NAS and just ask for advice. I dont want it to take over as there is a chance he may not have autism.

Just remember he is a child WITH autism, not an autistic child

You can ask me anything

 

[Nix]

Hi hun. At the age of 2 my son was unable to speak other than the odd word and as he progressed any words that he did say were not clear. At this point my HV had picked up that his speech was delayed and referred him to a speech therapist. At the time there was no mention of Autism although his behaviour seemed very different to my older daughter and I was picking up that there may be something.

Fast forward a few years and my son was referred to a specialist nursery for children with speech problems which was NHS funded and based. It was here that his behaviour was picked up. He is a very good little boy who is very loving. He is bright and has quite a good attention span. We had been having problems with what we thought was stubbornness - completely refused to get in the car if he wanted to do something else or wouldn't go into certain shops. He put his hand over his ears with some noises and seemed sensitive to sound. He makes very fast repetitive movements. He screams if you touch his feet. He likes absolutely rigid routine. Plus many more things.

His speech therapist referred him to a paediatrician to start the assessment process he was then referred to an occupational therapist. These appointments were in March and the Dr said that he thinks my son has Aspergers. He still needs to see an educational psychologist but they decided that he should start school first - which he did today. He then has to see the paediatrician again in March.

The main thing is that he has started mainstream school and he isn't different to the other children. Please don't worry. As long as your son gets the support that he needs he will do just fine. The fact that it has been picked up early is a good thing - not so that your son can get a label but so that he can get all the support that he needs to flourish. It is hard to answer your questions as Autism can vary greatly which is why it is a spectrum. Your son sounds just like mine was at 2 and other than the speech still being difficult to understand at times there really isn't an obvious difference between him and other children. I think most of the things we notice now are because we know that they are there. Please do not worry. Research Autism so that you know what you more about it. There may be strategies out there that can help you and your son in the meantime.

 

[MilosMommy7]

your DS sounds just like mine. he'll be 2 next month. he's been receiving speech therapy for the last month and a half. so far 2 people say he has no ASD, and 3 say they DO see it. i'm currently waiting to get a second opinion. you're not alone

 

[LoveleeB]

Hi,

I never thought that I'd be posting in this section, I feel so alone

I have the most beautiful, wonderful DS who's just turned 2 he's my first child. I also have a 2 month old baby. I noticed that he's speech was very delayed he doesn't really say any clear words he waves bye and attempts to say it but it's not clear. Also he builds towers with he's building blocks and lines his blocks and straightens them if there out of line. He jumps up and down flapping his hands, walks on tip toes. Climbs all the time and is never still. He also makes lots of noises when were out and about like a mmmmmm sound.

Now for the positive he is so loving and puts out his arms for a cuddle, he will pull my face to him for a kiss. He gives eye contact with everyone, he loves people and other children and will join in with them. He loves going for walks in his stroller and the car, he always sits still throughout the whole time. He knows where the local park is and gets excited when we approach it and sad when we leave.

I know all this is ASD he had his 2 year assessment and the HV seemed concerned, something that I wasn't until her visit now I feel sick all the time and can't stop crying. I have no one apart from DH to talk to who is fantastic but I just don't know where we go from here? I feel such a failure is it something I've done? I'm scared what the future may hold for him, will he ever lead a normal life? Will he be bullied? Some children and adults can be so cruel I've seen it. Hopefully it's a long way off but what will happen when we die? I'm so afraid for him, I just can't stop crying I wish it was me and not him. I love him so much it's breaking my heart in two.

Sorry for the long post it may seem a bit mixed up it's just how I feel at the moment.

Thanks for reading.

Hi Tommee

I just wanted to say that I can relate to what you are going through. My son seems to be regressing right now so I'm not sure where he will land on the spectrum but I cry all the time about it. I also lie awake at night wondering who will take care of my little boy when I am gone and will the teachers at schooll protect him. I also get scared of the day to day stuff, like what do I do if he becomes violent or loses his speech altogether.

My son also has no fear and he's taken quite a few tumbles in the house due to his daredevil ways.

The only way I can handle it is to take things day by day so that's what I'm trying to do. Otherwise it all overwhelms me.

 

[bornthiswayxo]

I have Aspergers syndrome, and know many other teens/young adults with ASC/ASD. Can I just say, your child is capable of leading a normal life, if the people I have met in my time are to go by. Your child may have to make more effort to do things considered the 'norm', I do day in day out... but I'm perfectly capable, my mum had the exact same worries... but I have so far turned out okay Good luck hun xx

 

[Tommee]

Thank you ladies for taking the time to reply it means a lot

I'm taking DS to the Doctors tomorrow due to a fall he had so I'm thinking should I mention my concerns to him? At least it will get the ball rolling and I keep reading time and time again 'early intervention'. The HV isn't returning for another 5 weeks then a referral can take months DS is already 2 years 2 months. Then again I don't think? Here in the UK anything is done until almost 3 years of age. I don't know

The ignorance has already started the glares in the supermarket when he's making noises, I just glare back at them, he's a child for gods sake a helpless child I want to say judge me not him. He seems to be getting worse but is that because I'm red flagging everything?

Everything goes in his mouth he chews everything, is there something I can buy to help? All his books are chewed.

Now I'm having sleepless nights worrying whether my 2 month old DD will be the same. I really do want to enjoy her as a baby not worrying all the time.

Sorry for going on. Thanks again for your replies xx

 

[MilosMommy7]

my DS makes a lot of weird noises too. people always look at him weird. lol. there's nothing i can do. i just smile and keep walking.

 

[Midnight_Fairy]

we have very similar age gaps so I remember what it was like. With my DD I tried to just take her how she was, its hard not to look for signs but just try not too xx Good luck at the doctors.

 

[Tommee]

Not a great day yesterday. I mentioned to our Doctor about DS whilst we were there he said that he was going to leave it to our HV since she's already noted ASD. So he didn't want to take over, he mentioned that DS gives good eye contact but everything else I'd said could be ASD and needs assessing further, which I already knew. Whilst we were waiting to be seen in the waiting area DS got bored and starting 'playing up' I got such a dirty look from some old woman who then said shhhhh, how do you deal with this? So I was stressed out even before we saw the Doctor.

When he was younger acting this way people just smiled but now he's older everyone expects more from him I dread shopping or any public places. I love taking him for car rides or walks in his buggy as long as no one is around.

Will it always be this tough? I wish it was me and not him I'd do anything for him but finding it do hard.

Xx

 

[Midnight_Fairy]

I think you just get a thicker skin as time goes on. I dont fuss in public now, I just let people think what they want. My main fight has been schools tbh and getting what he needs ETC but honestly just take one step at a time.l I can help you anyway if you just inbox me, happy to answer any thing at all. I know the process is so drawn out but stay strong. Try not to worry about others.
Occasionally I have snapped and told people he has autism but most the time I just dont worry about their opinions! xxx

P,s I survive with bachs rescue remedy lol xx

 

[Tommee]

I think you just get a thicker skin as time goes on. I dont fuss in public now, I just let people think what they want. My main fight has been schools tbh and getting what he needs ETC but honestly just take one step at a time.l I can help you anyway if you just inbox me, happy to answer any thing at all. I know the process is so drawn out but stay strong. Try not to worry about others.
Occasionally I have snapped and told people he has autism but most the time I just dont worry about their opinions! xxx

P,s I survive with bachs rescue remedy lol xx

Thanks again for your replies you might regret offering to help as you may well have a full inbox Lol

DH is coping so much better then me he's never cared what other people think in general so he's quite thick skinned anyway.

I just want the referral now and get him the help he deserves the HV is coming back to see us in October so that will be the start of the process.

Xx

 

[Midnight_Fairy]

I dont mind

Sometimes I feel like carrying a banner explaining lol but then I guess if people are so ignorant thats their problem. My sons problem is he does not care how old people are, he will tell babys to be quiet lol xx

 

[littlelinnies]

hey! i know how you are feeling! when i was told my daughter had ASD i was so gutted!but three years on we are doing good! you need to look at it as i did! my daughter wont be joining a gang or anything like that! i will get to keep her, she may not move out, which is sad in terms of the plans i had in my head for her. (as we all do) but it means i get to keep her forever
everywhere she goes ppl love her, shes so funny! all these things are because shes special!
on the negtive its took ages for me to get any help for her! i shouted and shouted and pushed and pushed for the help she needed and now shes at a brillant school and shes happy. x