Daughter about to get diagnosis of aspergers, im devastated...is this normal?

[kelzyboo]

Hi all, I popped over from ttc as i've only just spotted this forum and i'm very glad i did, apologies if i talk and rant too much i am just very new to all this and i guess you could say i am struggling to take it all in...

Well, my beautiful daughter has just turned 5 and the problems were spotted last year (her first year at school), i guess most of the signs were already there but for some reason or other i never considered that there may be a problem, i just thought that was her personality (i feel very guilty about this, i am her mother how could i not know?)
A lot of the problems she has are at school, when she has to interact with other children, share and and wait her turn etc...
She's my only child at the moment so she pretty much gets things her way at home which is probably why i didnt notice the difficulty she has with other children.

She is a very bright, lovely little girl, she very verbal and can comunicate pretty well although she does have some difficulties there. She doesn't like certain noises (like the hoover or an alarm going off) or smells, she can become very distressed when i am cooking food, and can kick off at school in the dining hall. She hates it when we use a public bathroom as the noise of the hand dryer is too much for her, i find it very distressing when she kicks off in public i always feel i am being judged because i can't always calm her down quickly.

Anyway we have the ADOS assesment on the 28th of september and have been advised that we are looking at a diagnosis of aspergers and i am very upset about this. I love my daughter more than anything and i wouldn't change her for the world and i know that aspergers is a part of who she is, a part of what makes her my amazing little girl and i accept that but i worry what the future will hold for her. She is very high functioning and everyone keeps telling me she will be fine, she will learn to deal with it and live her life but i still worry.

Would be helpful to hear from someone else who has been through or is going through a similar thing....i feel so alone at the moment, i feel like i am not a good enough mother as i am struggling to cope with her outbursts.

Thankyou, just writing it down and getting it out helps a bit x

 

[Midnight_Fairy]

Hiya xx

My son is high functioning too. Your description sounds like my son! He HATES public loos and hand dryers!

Firstly, It is a normal reaction if it is a shock. I was relieved with my sons diagnosis as I knew he had it. It may well take a while to get your head around but you will soon realise this is just what life had instore for you. You will soon see it as nothing bad but a blessing. I believe we only get given what we can cope with and I feel blessed to have my son. You will soon feel the same.

Maybe do lots of research and you done the right thing by posting here. You can find lots of help and support. It makes life easier if you know and understand more about aspergers.

A diagnosis may well help your daughter because you will be able to have a better insight into how she thinks and help with behaviour and understand more. There is no reason why she can not life life to the full. Maybe a bit more guidance but she will get there with you behind her.

What area are you in?

XXX

 

[kelzyboo]

Hi midnight_fairy, thakyou for your reply

It is shock that i'm feeling, i had no idea until it was suggested to me by someone else and of course after doing a little research into it i recognised the signs that were there all the time. I am a little upset still, i guess because it was unexpected, but i am upset that she will miss out on the fun and friendship that she should be experiencing at school as she struggles to relate to other children. I see them when i go to collect her and they make so much effort to talk to her and she has to be told by me to say hello, without that she wouldnt respond. so i worry that she won't form friendships and will be lonely.

I will be relieved to get the diagnosis as she will recieve the support she needs to get the best out of life, but even though i know she has it i will be shocked when i have it confirmed. I guess i am right at the beginning of this process and i'm feeling so many emotions at the moment. I feel guilty, angry (this is because i've had to fight to get her 1-1 support at school, which we now have even before the diagnosis) and a little lost if i'm honest.

I believe my daughter is a blessing and i wouldn't have her any other way, her personality and sense of humour are amazing and i can honestly say i wouldn't change one single thing about her. I haven't wished she doesn't have it, is that strange? But if i could take it away from her now i wouldn't because to take it away would mean taking away parts of her that i adore and i couldnt wish for that.

I guess i am struggling with it as i don't know a lot about it, i am hoping that after the diagnosis i can learn more about it. I want to know how she sees the world so that i can be the best mother i can, the mother she deserves.

I think you're right that we are only given what we can cope with but sometimes i think i am not strong enough to cope, i wonder who in the world decided that i would be any good at coping with this! I only feel like that when things are hard, i know i can be strong because for her i can do anything!

I live in the manchester area of the uk, i know there are a few helpful services in my area that we can have access to after the diagnosis and i am going to do everything i can to learn all i need to know because thats all we can do isn't it? Learn about it and help them to understand why they need a little extra help to deal with things.

Thankyou again for replying, it's great to know i'm not the only one x

 

[Adanma]

Hi kelzy! My son is 5.5 and was diagnosed with aspergers this year. We suspected this was the case since he was about 3 or so although we've known he was different since birth. When we got his diagnosis I was so relieved to have somebody validate what we had been suspecting. I went and did all the paperwork stuff for school and dove right into my new role of advocate!

Maybe 2 weeks after his diagnosis I started to cry randomly for no reason. I would just burst into tears. I made a mistake by not letting myself cry over it. I thought I would be a bad mom if I cried over it. I needed to cry over it to be able to move on. In some sense you are loosing what you thought your child life would look like. All the things you invisioned like them going to prom etc, may not happen now. Maybe they won't have friends. Maybe they will be bullied. It's hard.

Aspergers isn't the end of the world true. But it doesn't mean it's easy to hear as a mom. You love your baby and want her to have a "normal" life. That makes you a GOOD mom. So have your cry and feel bad for a while it's okay. You'll bounce back and be your daughters biggest fan and advocate because you're a GOOD mom.

Adanma

 

[Midnight_Fairy]

Hi, I understand your post completely. It is hard whether its expected or not and I think the "unknown" about the future makes it worse? Doesn't it?

I always make sure I dont build things up. If I am concerned I will either speak to someone or write it down. I find support groups invaluable. On FB there is a good group called "ASD support and advice" Very good group.

Also are you registered with Parent Partnership? They can advice you on anything from benefits (DLA) to support groups and things. Worth contacting them xx

Support groups are precious whether they be online or actually going to one. Search around.

More importantly, look after yourself. Dont let your self become run down. Take time out for yourself if you can even if its 5 mins xx

 

[kelzyboo]

Thankyou for your reply Adanma: I always knew my daughter was "special" and noticed a few of the behavoirs early on although i just put it down to being her personality, i never considered that it may be ASD. She has always had a very strong personality and i love that about her, i have been her biggest fan since she was born and that will never change. The Asperger's is only a small part of a very big personality and shes such an amazing, wonderful, beautiful little girl that nothing at all could change the way i feel for her and i don't think she will let it stand in her way either. I am so proud of her. I took on the job of advocate as soon as ASD was suggested and i think i've taken to my new role pretty well, i've gotten the appointment for her a year before they said she could have it and she already has 1-1 support so i hope i am doing ok with that side of things.
I have cried a lot but thats more about the uncertainty of it all, i hope after the diagnoses i will accept and come to terms with it as quick as i can, hopefully there will be too much new things to learn for me to dwell on it too much!!

It's always helpful to hear from others in a similar situation so thankyou, helps me to put things into perspective xx

 

[kelzyboo]

Thankyou Midnight_fairy: It is the future i worry about most, there are so many things about it i don't understand so its very worrying but hopefully after the diagnosis i will learn all i need to know so i am a bit more aware of things.

I have heard of Parent Partnership and have been in contact with them after reading your post, they will help me know what to do next after she is diagnosed so thankyou very much for that x

We have a fantastic family around us so i can have that break whenever i need it and that is priceless, without that i would never cope and i admit that!

It is great to hear from others who have been there and got the t-shirt as i am only starting out on this journey, hopefully there will be a support group in our area as i am keen to do anything i can to make my daughters life easier xx

 

[Midnight_Fairy]

I thought the diagnosis was the end of the journey but it was just the beginning, I am new to it to so please keep posting here if you ever need any advice or just a chat xx

 

[Midnight_Fairy]

I am pleased your feeling happier xx

 

[kelzyboo]

Thankyou midnight_fairy i will deffinately keep posting here, it's nice to have the support to be honest, even writing it down on here helps to get the emotions out where they need to be. Thankyou for your replies and all your help will deffinately keep you informed as we are due for the diagnosis in 2 weeks xx

 

[Adanma]

Thinking of you! Do keep us posted!

Adanma!

 

[Nic1107]

High hun! I have high-functioning ASD, and I wasn't even diagnosed until I was in my early 20's so I missed out on the support systems (that probably weren't too common when I was growing up anyway). Despite that, I've had a pretty normal life and now I'm a wife and mother so I wouldn't worry too much about your LO's future. Some things are harder for me- I can't drive, for example- and a lot of people don't understand how much certain things (noises, etc.) can affect me so it gets frustrating. Good luck! People on the spectrum are some of the most interesting, intelligent and funny people I've ever met.

 

[kelzyboo]

Thankyou everyone i will keep you posted x

Thankyou Nic: I've never heard anything from the perspective of the actual person affected so it's very refreshing to say the least! It's great to hear that you're married with children, thats what i worry about with my little girl, that she won't be able to get married or have children. There's obviously no physical reason why she wouldn't be able to, i just worry about her coping with it all and forming relationships as that is where her difficulties lie. I hope that when she is older she will learn to manage her difficulties and will be able to join in because she has so much to give to the world, she is amazing and i don't want her to miss out on anything that she wants to do.

The more i learn about it the more i realise that she doesn't have to miss anything at all, she just views the world in a different way but it doesn't mean that its a bad thing, we all have things to deal with and overcome it just may be a little harder for her.

I agree that people on the spectrum are some of the most intellegent and funny people, my daughter has the most amazing sense of humour she makes me laugh so much and she is so clever it shocks even me sometimes! I think she has a wonderful future ahead of her (although i may be biased!), she will deal with her ASD better than me i think!

Thankyou for your reply it is genuinely great to hear things from your perspective and you sound like you have a great life, which is all i hope for my little girl xx

 

[Nic1107]

I've found that, in my own experience, social life wasn't too big of an issue. Many people on the spectrum frankly don't care if they have friends and prefer their own company, so that part tends to be harder on the parents I think. I did get made fun of as a kid which was rough, but I've always had a band of lovable weirdos to hang out with that love me for who I am (despite the fact that I'm lousy at keeping in touch with people).
The bigger difficulty has been dealing with the Sensory Integration Disorder (which presents in varying degrees for each individual; for me it's my predominant 'symptom'). I have difficulties with loud noise, huuuuge difficulties with repetitive noise and noises that I find 'gross' (like the dog drinking water, ewwwww!) and what would simply annoy others makes me feel very tense and sometimes even angry.
S.I.D. can also affect bodily systems; as in, my internal responses to stimuli are a bit screwed up so I sometimes have a racing heart, I breathe much more slowly and deeply than I've noticed others seem to, and I've had digestive difficulties in the past. Nothing dangerous, just annoying sometimes. Ummm what else...
Oh yeah, I have no visual imagination so I can't see pictures in my head, which is the main reason I can't drive as I lose track of whatever is around me if I'm not looking at it.
There are a lot of things that the neurotypical community still doesn't know about ASD that those of us on the spectrum have discovered amongst ourselves and want the rest of the world to know- except that would generally involve, you know, communicating with the rest of the world which isn't some of our strong point.

I know of an amazing online community for people on the spectrum and their families which is run by a man with Asperger's and populated with people on every point of the spectrum, including folks who are non-verbal in 'real life' but talk plenty online! I'm not sure if I'm allowed to link to it so PM me if you want the link.

 

[kelzyboo]

Thankyou nic,We are very lucky at the moment as my little girl doesn't seem to want to interact much with other children, she is very much at home with her own company and her 'hobbies' are solitary ones so i am pretty sure she isn't looking to join in. She does have a friend, a little boy also on the spectrum, and they interact fine. They play together if they want to and ignore each other if they want to, they seem to bring out the best in each other, like an understanding of one another that no one else gets.

Her sensory difficulties were the first i ever noticed, she's always been a very picky eater but the texture of certain foods seem to disgust her, she likes crunchy foods and will not eat anything soggy or wet in texture. Her hearing is oversensitive and certain noises are too much for her, i can't vaccum with her in the house as she covers her ears and screams and it's not worth upsetting her for a few bits! I don't know if this is part of it but sometimes when i am helping her dress she has a meltdown because i have touched her clothes and made them 'too hot'.

I am still at the start of the learning process and all the info i can get is very helpful, i will deffinately pm you for that website link if thats ok? Thanks again for your insight into my daughter's world x

 

[Adanma]

nic: thanks so much for your input. It's nice to hear from an adult with AS. Sounds like you have a beautiful life. I always wonder what would have come up had they known more about ASD when I was small. I was so much like my son is now it makes me wonder. I'm still a pretty solitary person and it suits me well. I no longer have tantrums however! lol! I did get a dx of OCD as a teen and I have a well above average IQ like my boy. I always say we're kindred spirits! Anyway, thanks again nic!

Adanma

 

[Midnight_Fairy]

Great post Nic xxx

 

[Vickieh1981]

Today might not be a good day for me to reply since I have been tearing my hair out with Andrew.

We are further down the road than you since he is 10. He is very very intelligent with a lack of social skills as is the norm with aspie children.

I dont have any advice (other than they do learn certain behaviours as they get older) because I still struggle and still feel a bad mother.

Hugs to you xxx

 

[velvetina]

Hi hun,

My eldest son is now 14 yrs and I totally understand the rollercoaster you are on. I still go through the turmoil and worry with my younger 2 children.

I went to a very very dark place when my son was very young, and it took some time to see the light at the end of the tunnel. At the end of that journey is acceptance, and with that comes a sort of peace, that allows you to move on and for me that was being able to talk about the fact my son was autistic. I could discuss it with strangers but not friends, it was like a fear. Even when my 2nd son was born, I stressed and got anxious and recognised I needed to talk out my fears, and not keep it all hidden.

That "acceptance" is different for all of us with regards to time, and for us this far along, I wish I could have seen at 2 years old how my son would have been now, I know I wouldn't have gone to such a dark place. He is now good friends (as are his mum and I) with another lad with aspergers and we joke they are like two old men when they get together, they just fit, get on in their own way and he actually supports my son and watches out for him when they are together.

Take it a step at a time hun, don't bottle anything up, talk about it and share it and find out about support networks that can help inform and support you. It was great to read Nic's comments, insight like that is critical I would love to hear more.

Big hug to you hun and your beautiful little one. x

 

[kelzyboo]

Thankyou vickieh, It's school holiday's here so your not the only one with bald patches lol Your not a bad mother, it's not an easy thing to deal with and most people don't realise what we go through everyday. All we can do is our best, i got mad today all because my daughter refused to got to sleep unless i took a sequin off my top and gave it to her, she absolutely couldn't sleep without it!! Normally i would have given it to her, today was a bad day. How can she have such a meltdown over a sequin? makes no sense to me but it does to her! We are just human beings trying our best everyday to deal with something we can never fully understand, It's not an easy task as i am finding. All we can do is be the best mother's we can be, we all have bad days but we have to give ourselves credit for the things we face everyday that most people take for granted, like getting our children dressed (causes huge outbursts for my little one) most parents don't even have to think about that do they?

I think intellegence is a help, they will learn the things that don't come naturally to them, most of the things anyway. plus not everyone is sociable, with or without AS!
Hugs and thanks for your reply x