asd diagnosis

[A and A]

Hi there we have 2 children Joshua aged 5 and Liam will be 3 on halloween, Liam has his final assessment at the CDC Nursery this wednesday when the nursery sessions ends we have a meeting with the MDT Team where we know that we are going to receive a diagnosis of Autism for Liam, which I am finding it hard to accept and don't know how to deal with my feelings so would like to hear from parents in the same situation and how do u cope.

Anna

[JsMum]

Everyone is different, if its something you have been expecting then it might be reliefe, knowing what a child has really helps to understand how to help them, and yourself, many parents go throw a mixture of feelings, some say its similair process to bereavement, so there is a rollercoaster effect, for me I didnt get a dx until he was older, though there was many symptoms it wasnt dx until he started secondary school, so I felt a kind of anger and resentment that my son had to go throw years of inapropriate support, I have a councillor so discuss these kinds of feelings with her, I feel that parents of children with autism/special needs should have access to councilling because it is a very emotional journey.

 

 

At first you might feel detatched, like it isnt happening, or its difficult to feel anything, others it hits them like a rock and it knocks them for six, for many parents we cry, scream, get angry and then slowly build back together.

 

I attend parent support groups one for ASD and one for ADHD and I get a lot of support from them, we have similair issues especially educational ones so you dont feel like your going throw this on your own.

 

National Autistic Society have further support for suspected and newly dx children and their families, Im a member and recieve frequent magazines and emails of upto date info and parent helplines, these may be of help to you at this time.

 

CONTACT A FAMILY are another great service to recieve additional support and they have a helpline so you have someone to talk to.

 

Take time to process the information and dx, ensure that you get some you time, take a bath, get early bedtimes, eat properly, go to the gym if you can, and try and relax as much as possible because the emotional journey really takes it out on you, so you really need to look after you as much as you can. basically you will need to take it really slowly and take it easy.

 

were here too if you need to talk to someone so you dont have to go throw this on your own.xxxx

 

JsMumxxxx

 

Edited October 25, 2009 by JsMum

[mygifts1306]

When my little boy was going thru assessment, and finally diagonsis, and the continuous with the school and pointing fingers i found that very difficult. the looks that i got from other parents at school, the hate was almost palpable, the did not want DS at that school. It was a real struggle and fight, and just the whole self obsessed culture that we are experiencing, it was so hard, i was in tears everyday, felt alone and isolated, it was such a dreadful feeling that i dont even wish my worse enermies. for some people its a relief because they have already suspected that there was something amiss. but for me it was so hard to stomach, he had been fine for the first 4 years of his life, the apgars scores were fine, all the the checks were great, at at the age of 5 to be told " hang on, your little guy has got Autism, and ther is no pill to fix him" that was hard, and as Jsmum has said, i went through a grieving period, grieving for the child i thought i had. It has taken me a long time to come to terms with it, and now I feel a lot at ease about it. And i would say i have come out a much more stronger person, and i am even more emphathetic.

 

I hope you will find the support that wil work for you. best of luck. xx

[tjw]

hi A and A

sorry your emotions all over the place at the mo, <'> i know how you feel my ds was dx in march this year with moderate asd i was expecting this dx but i still find myself crying somedays not when he is around, then i tell myself to stop because i have the most fantastic son any mother could wish for he is a loving individual who i wouldnt change for the world, i try and put things into propective ie he isnt physicaly ill like some poor children he is healthy, i take each day as it comes with george because i am aware that some little change can make him sad as he puts its, please dont beat yourself up because you feel upset and cannot accept this dx at present you will, take each day as it comes and enjoy your son he hasnt changed it is just an dx, i often just stop what i am doing to watch him play and feel myself smiling within, sorry if this reply isnt making much sence to you at the moment i am not to good with words and emotions myself, but belive me i no how you feel please be gentle with yourself.

takecare

theresa x

[Karen A]

<'> <'> <'> Thinking of you as this is a very stressful time.It is bound to be a period of mixed up emotions.

Karen.

[Sally44]

Everyone reacts differently, handels it differently and goes through the process at a different timescale.

So whatever happens it will be 'normal' for you, unless of course you find yourself suffering from depression.

For me it was like going through the grieving process. It was such a strange time because on the one hand you know that something is not as it should be, and so you want answers - but you don't want the anwers you are getting or the implications of them that your child has a lifelong disorder.

So you have relief, combined with dispair, sadness, anger, grief etc.

For a while I felt as if a policeman had come to my door in the early hours and told me that my son was dead. My husband did not feel like that, just me. And I would feel like I was on a merry-go-round where I would have really good days, or my son would do something new, or something positive would come from some professional input etc. Then I would have other days when I would just stay indoors and sob.

But what kept me sane was realising that my son had not actually changed from the day before to the day after diagnosis. What had chanaged and what had died were some of my assumed expectations I had for him and his life. The expectation of him going to the same schools as his sister, growing up in the neighbourhood and having friends. Getting a girlfriend, job, married, kids etc. Suddenly none of that was going to be automatic. Some of it might or might not happen. That is hard to deal with. We know what to expect or aim for with our other kids. With an ASD child you have no manual to follow. No promises from professionals. Just the great unknown.

Also understand that your partner may go through the process in a totally different way.

My husband always seemed to think that there wasn't much difference between our child and others. But he doesn't spend all that much time with him. So he does still struggle to cope when my son is being very 'autistic', and he can't get to grips with it.

It does get easier with time. And they do grow up and develop and learn new skills. And we talk about lifelong learning, which also applies to our children as well.

What is difficult is keeping up your own strength, because usually the diagnosis is not the end, but the beginning of trying to get the right educational place for your child. So just at the time when you are feeling at your lowest, you are supposed to 'pull yourself together' and start learning about the SEN process and assessments towards a Statement etc.

So, be kind to yourself and cut yourself alot of slack.

Someone sent me a poem that I found very insightful. I'll post it if I find it.

[Sally44]

Welcome to Holland!

by Emily Pearl 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 guidebooks and make your wonderful plans. The Coliseum, the Michalangelo 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 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 go out and buy new guidebooks. 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, 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." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.