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Autism

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SummerSunshine

Autism

My youngest daughter has Autistic Spectrum Disorder. She was diagnosed with this when she was 13, she is now nearly 18 and Astridlora is still a child. That's not a problem, I love how she's stayed more less forever young. Her body is changing and in that way she's growing up, she is a very pretty girl but I don't see her ever having a family of her own. I think she will always need to be taken care of.

 

In 2016 my husband passed away after he was involved in a car crash, this as any death would, affected our family badly but it destroyed Astridlora. She couldn't come to terms with the fact that her dad was gone and that she would never see him again. Ever since she lost her dad she has suffered from bad nightmares where she wakes up and screams the house down! She also suffers from the fear of being left alone, some nights she won't sleep unless I am in the room with her, and other times she'll burst into tears randomly even if she was really happy only a few seconds before.
Last night Astridlora burst into tears and I spent the next 3 hours cuddling her and comforting her before she finally calmed down.

 

I think it's the death of her dad which has brought all this on, but I'm ashamed to say I don't know how to help her through this. She won't go to tthe doctors, and in the past when I've had people come to her she sits like a statue and won't speak or move until they're gone. Her older sister and brother are a great support to her, they both look after her and help me. Last week Rebecca slept in with Astridlora to comfort her.

 

I just wish i could help her through this, but she won't see or speak to a professional so I am at a loss of what to do now.

 

Any advice regarding this would be greatly recieved. Thank you for your time.

Star contributor
TOM-RO

Re: Autism

Hi @SummerSunshine ,

Thank you for your post. Firstly I am so sorry to hear about your husband. I cannot begin to imagine the impact this would have had on you and your whole family and how this is still impacting your lives every day. Its heartwarming to hear that your older children are so loving and kind towards their sister. It sounds like your family is very close.  

 

You mentioned that Astridlora will not go to the doctors and freezes up when people come over. It sounds like she feels scared or uncomfortable speaking to people she doesn't know well? This would make getting help for her difficult.  This sounds quite typical for children with autism, has anyone else on the forum had experience with helping their children with autism feel more comfortable with new people?

Have you looked into finding her a therapist who specialises in helping children with autism? Her grieving process is likely to look different from that of other children. It might be difficult at the start to get her to open up to a therapist but hopefully if they have experience with children similar to your daughter the process will be easier than her speaking to her GP. 

It sounds like its been a very difficult journey for you and your family, its a lot to cope with. Perhaps by getting Astridlora to see a therapist and working collaboratively with them to support your daughter you might feel more confident in what you can do for her? Or even if she refuses to go at first, perhaps you could see that person for some tips and to better understand how you can help her and then slowly ease her into seeing them too. Not only could it help with her grief and loss but it could help her develop skills for the future in becoming more independent and social. I'm also wondering if you are getting any support yourself? You sound like a very loving mother and sometimes when we are caring for others we forget ourselves. 

 

I am interested to see if anyone else has had a children with autism and how they have helped them, or any advice or support people on the forum may have.

Parent/Carer Community Champion
PapaBill

Re: Autism

Hi @SummerSunshine 

 

We all wish we could help our children grow and pass through troubled times with out so much pain.  It must be so much harder for you with your daughter.  

 

I don't have any experience with Autistic Spectrum Disorder so unfortunately I have little in  the way of practical advise I can offer.  All I can do is tell you it sounds like you are doing a heroic job of looking after your daughter in a tough time and you should always remember that no matter how tough it is you are making her life better

 

 

PaPa Bill

Active scribe
SummerSunshine

Re: Autism

Hello @TOM-RO ,

 

Thank you for taking the time out to respond to my message. And thank you for your kind words regarding the loss of my husband. It was hard for the whole family to accept and deal with, but we are a very close family and have all been there for each other since that devastating day. My son and daughter are very close to Astridlora, she is their world and they all love her very much and are always there for her when she needs them.

 

Thank you for your advice and thoughts regarding my problem. Astridlora's problems make it difficult in helping her but you have given me some ideas as to how to help her through this. We did have special therapists who came to the house but as I said before, she would just sit in silence and never said or did anything whilst they were there. But I am going to try actually meeting an Autistic specialist in person to see if they can give me any tips on how to best help her. So thank you so much for this advice, hopefully they will be able to give me some answers and ultimately help Astridlora.

I will let you know how I get on.

 

No I don't have any support, except for the love and support I get from my children. I feel like i am coping ok though, sometimes it can be a little stressful but luckily i am a strong woman and cope well.

Active scribe
SummerSunshine

Re: Autism

Hello @PapaBill ,

 

Thank you so very much for this lovely message! I have always tried to be there for my children and do my best for them to ensure they lead happy lives. Astridlora can be very hard work and she doesn't deal with change very well so it can be really hard for her sometimes. But between us all we look after  and care for her, her and love her to bits.

 

i am hoping soon, after seeking advice from an Autistic specialist than we can help get her through these difficult times.

 

Thank you again for your message, you actually moved me to tears.

xx

Parent/Carer Community Champion
JAKGR8

Re: Autism

My heart goes out to your family. Time may make it better but I agree that an autism expert would be the way to go. Professor Tony Atwood and his team offer many services but cost money. Did you know you can also refer as a concerned person in someone’s life? That way your daughter doesn’t have to go. She might even go with you and get more comfortable with the idea. Big hugs
JA