Published on 12, July, 2020
So, I have just come across this site after looking for more information on autism. I am a 34 year old mum to 7 year old twins (boy and girl) who are my absolute everything. Both my kids are now considered autistic but we are still waiting on a diagnosis and have been waiting for 3 years. We have with the schools help come to terms that my daughter is autistic and the school have been fab to try and get a diagnosis. I finally had a speech and language assessment for both of them last week and found out then that my son is autistic too. It felt like a bit of a smack in the face. Deep down I had a feeling that he was but as he didnt show the same signs as my daughter does, which are extreme, I kind of pushed it to the back of my mind. When I got told I felt pure guilt. Why??? I felt and still do feel like I have neglected him a bit when it comes to maybe seeing the signs as I have been so busy with my daughter and it has been so much hard work I think I made myself believe that having one 'normal child who supports his sister was what I could handle. At the moment I feel like I can't handle all this by myself. Their dad who lives with us has still not taken to autism and keeps telling them off for their little kinks (thats what we call them). I work nights so i can be there for both kids during the day and i am not sleeping coz all i am worried about what their life is going to be like having to live wih autism as all.i have ever heard is horror stories so am really looking for some inspirational people who have deat with this and can maybe explain to me.how I am supposed to cope with this and the worry about what' going to happen to them coz I want the best for my babies and I do everything I can to make sure that they have the best life possible. Thank you for letting me go on a bit.x
My daughter was diagnosed at 2 and a half, however we knew something wasn't right at around 18 months old, she seemed to progressing brilliantly until she was 13 months old and had her MMR vaccine, she then suffered 12 weeks of infection after infection, after the infections had dried up she was a completely different child. Where she once babbled, she didn't any more, where she once engaged with you, she didn't any more. As she grew older she screamed to show her dissatisfaction, ear piercing screaming that sometimes lasted 45 minutes! She would throw her beaker at you if she wanted a drink, she would lead you to where she wanted you to be, she used me as a tool. She had a vacant expression on her face, she would have nothing to do with her twin sister, choosing to sit behind the sofa piling her jigsaws up, or spinning wheels around and around, she would hold her hands up in the air whilst playing with sand/water and watch it dribble through her hands, and then do it again and again and again. She had no friends, she was in her own little bubble and she appeared to like it that way. But little by little we worked along side a play therapist, and she had a keyworker from the age of 2. Because of her early diagnosis she had early intervention that i believe has helped her, i was blessed to be a full time mum, which was no easy task, so i made it my mission to turn every little thing into a lesson, almost like i was programming a computer. Fast forward 14 years, she has just finished her GCSE's passed most of them at grade C (including maths and english). She's at college learning hair and beauty which she loves, where she couldn't speak before, you now can't shut her up lol! She is now what i would class as high functioning. And i would not want her any other way! I no longer see her autism, i just see her. I would try not to worry about the future, it's the here and now that's important.
“ Yesterday is gone, tomorrow has not yet come. We have only today, let us begin – Mother Teresa”
Welcome NAS35092 I'm new as well
All I can say to help you is that everyone's "story" is different just as each person has an individual character/ personality so is our autism . On this forum alone and there are several forums and Facebook pages .. there any cross-section of people. Those in full time jobs and careers, those with friendships and relationships and their own children. There are people who can utilise the gifts of autism and be successful in their own way. There are as you can all too well imagine those with the opposites of those things. But as parents of children who have been diagnosed young you have chances to help your children that many on this forum never had. Im pleased for you that you have a supportive school and hopefully that will be the same for your son. As with everything in life we often have to take one step or follow through one part at a time as we cannot predict the future. My advice is to concentrate on giving your children the happiest childhood they can have and to be grounded in your love for them. Get what support you can. Make sure you use any respite that is offered to you for the well being of the whole family. Look on the main NAS website for their information and support. There is parent to parent support by phone I believe which might help if you can chat to other parents. See if there are any NAS groups in your area there is a directory on the main website.
Hi NAS35092,
I'm sorry to hear about the situation that you are currently going through with your twins, and hope that you are doing ok.
If you would like to receive support, it might be worth searching for services in your area on the Autism Services Directory: www.autismdirectory.org.uk This includes services such as: support groups, social groups, advocacy, befriending, residential settings, outreach and respite.
You may also want to contact your local social services, if you are not already receiving help from them. Please take a look at the following articles for further information on getting help from Social Services:
(Child England and Wales)
www.autism.org.uk/17378
(Child and Adult Scotland)
http://www.autism.org.uk/living-with-autism/benefits-and-community-care/care-and-benefits-for-parents-and-carers/care-support-for-children-with-autism/social-services-getting-help-for-children-and-adults-scotland.aspx
Services provided by the National Autistic Society may also help, you can read more here:
www.autism.org.uk/en-gb/our-services.aspx
Our Autism Helpline may also be able to help. Advisers can talk through the different types of support and search for services in your area, if you would like to call. They may also be able to discuss other autism related issues with you.
The Helpline is open Monday to Thursday 10am – 4pm and Friday 9am – 3pm on 0808 800 4104.
Please see the following link for further information:
http://www.autism.org.uk/services/helplines/main/contact.aspx
Best wishes,
Nellie-Mod