FINALLY getting a referral for ASD

[Tommee]

Hi,

As the title says finally although we may have a wait but at least the ball is now rolling. DS is now 2 years 3 months old & I've known something was different as he was never like 'typical' children. He's always been so busy on the go all day long never really listening just doing he's own thing. It became so much more obvious when he never learnt to talk, he's still non verbal & doesn't understand commands like any commands.

The HV has referred us to a paediatric Doctor & an assessment for speech & language which we have in December.

DS seems to have calmed down slightly as we visited a friends house & he played lovely with some toys provided last we went he basically wrecked the house so we hadn't be invited since he plays better at home with his millions of toys & loves it when his cousins come to play.

Things are still the same whilst shopping though today he kind of talks in the supermarket in his own voice best way I can describe it is like a little foreign boy..sorry I can't thing of a better description. We as always get stares and funny looks, why do people do this?

He still won't do anything we ask, but is so affectionate & loving he comes to both DH & I for kisses & cuddles which I love, I pray that never stops. Also he gives eye contact but I've noticed it's not for a long time.

One thing that worries me (well along with a million things) I've read that he'll have a blood test for fragile X how will they manage to do a blood test on him? We had to hold him down a the Doctors for him to look in his ears, DS was so upset I felt sick, he screamed the place down as he didn't understand what was happening.

Just thought I'd update as I've not posted in a while.

Thanks for reading xx

 

[Marleysgirl]

Congratulations on getting the referral

 

[LoveleeB]

Good luck. I hope things move quickly once you get the assessment.

 

[mummy3]

Good luck

 

[TaylorsMummyx]

My little boy is 2 and just had the blood test done, I had to hold him down but that because they was moving too fast from letting him play for 2 mins to taking him to a small room in seconds an he doesn't like change too quickly, il be honest becaus he was so hysterical they didn't numb him an just got on with it, he screamed and screamed but after they done he stoped, congrats on getting seen! X

 

[Midnight_Fairy]

we had to hold my son down for blood test but they said it was ok and not to worry, I had to bribe him with new toys after but it was over very quick xx

 

[Tommee]

My little boy is 2 and just had the blood test done, I had to hold him down but that because they was moving too fast from letting him play for 2 mins to taking him to a small room in seconds an he doesn't like change too quickly, il be honest becaus he was so hysterical they didn't numb him an just got on with it, he screamed and screamed but after they done he stoped, congrats on getting seen! X

Hi,

Thanks for your reply, your DS sounds very much like mine & similar in age. I've always 'known' like yourself I just thought that he was a naughty child always on the go never doing as we asked. He also is unable to use a cutlery we encourage him at tea time he'll do maybe 4 to 6 mouthfulls then get frustrated & start flicking his food.

Also the handflapping is a daily occurance when he gets excited. We often take him to the park & he does it when other Children are near him. He will go near his baby Sister & say Awww which is so cute to see then he'll suddenly change & throw a pillow or toy at her & laugh loudly, we remove him promptly because when we told him off he laughed even more he thought it was a game.

He is so loving though & comes all the time for a cuddle, he'll play chase with his 11 year old cousin, not sure how he'd react to his peers though.

Like you I fear for the future to be honest I've been physically sick with worry, what School will he attend? Will he be bullied? Will my DD be the same? I pray not then at least I know she'll help him when DH & I die.

So many questions, but no answers as yet. I'm hoping it won't be too long before he's seen as early intervention is the best way to go. This is what I've read time & time again.

Xx

 

[TaylorsMummyx]

I think the worry is normal I look at ds and some days I think there's nothing wrong and it's all in my head, but there's too much there to be just a "one off" or "lazy". From about 2 weeks old he started the hand flapping thing, he doesn't do it much just when he's excited. I know it's going to take a while to get a dignosis an if I'm honest I'm embarrassed incass iv made a fool of my self. Me and my OH have diffrent veiws about it an I can not talk to him at all about anything

 

[LoveleeB]

I think the worry is normal I look at ds and some days I think there's nothing wrong and it's all in my head, but there's too much there to be just a "one off" or "lazy". From about 2 weeks old he started the hand flapping thing, he doesn't do it much just when he's excited. I know it's going to take a while to get a dignosis an if I'm honest I'm embarrassed incass iv made a fool of my self. Me and my OH have diffrent veiws about it an I can not talk to him at all about anything

My DH is the same. He refuses to see there even "might" be a problem. It's very lonely trying to get a diagnosis when no one supports you.

I also have a young daughter at home and I watch her all the time to see if she has symptoms.

Somedays I feel like I'm going to miss these special moments with my children because I'm too busy worrying about the future for them.

 

[TaylorsMummyx]

I have a daughter at home too who's 3.

My oh and me are having huge argument today because I havent done any house work, does he not realise I have other stuff to
Worry about? I know for a fact he won't tell his family.

 

[Tommee]

I'm sorry that your OH can't/won't accept it. My DH is fab luckily at first he was in denial but I showed him lots of information on the internet about ASD & he now accepts although he tells me daily he's still our little precious boy & no 'label' will ever change that. Just as well that I have him though as I have no one else my family are crap & don't really bother with us.

I do feel that I'm scanning my 3 month old DD & watching her every move. So far she seems much calmer then he was at this age, DS was so fidgety from the day he was born.

Some days I feel ok others days I feel sad & worry about everything.

 

[Midnight_Fairy]

Thats a normal way to feel chick. Are you on FB? x

 

[Tommee]

Yeah I'm on FB but I've not shared it on there with anyone. Most are what I call 'fair weather friends'. The only person I told everything to and shared with was my Dad he is the person I need right now but he isn't here anymore

I do feel a little guilty though as sometimes when I'm reading about a friends child on my friends list all the wonderful things their 'typical' 2 year old is achieving and they're looking forward to Christmas explaining what they want etc I do get a little envious as my DS doesn't even know that Christmas exists. I know that it's not their fault and why shouldn't they be sharing it? I pray that I'm doing the same for DD soon.

Sorry I should just have answered yes lol x

 

[TaylorsMummyx]

Same here Hun! My ds doesn't even look 2! He's so Tiny he could pass for 18mths!

 

[Tommee]

I have the opposite DS is very tall so looks older then he is. That's why people expect more from him as they think he's older. People even look when he's been quiet in his buggy then look at me as if to see "isn't he a bit old to be in that".

 

[LoveleeB]

Yeah I'm on FB but I've not shared it on there with anyone. Most are what I call 'fair weather friends'. The only person I told everything to and shared with was my Dad he is the person I need right now but he isn't here anymore

I do feel a little guilty though as sometimes when I'm reading about a friends child on my friends list all the wonderful things their 'typical' 2 year old is achieving and they're looking forward to Christmas explaining what they want etc I do get a little envious as my DS doesn't even know that Christmas exists. I know that it's not their fault and why shouldn't they be sharing it? I pray that I'm doing the same for DD soon.

Sorry I should just have answered yes lol x

I understand where you are coming from with FB. As strange as it may sound I deleted all my "fair-weather" friends from FB so I could add my new friends who have children with autism and I could post comments without feeling judged or pitied by people who can't understand.