Published on 12, July, 2020
Hi All
As my user name suggests I am a frustrated dad with a son who has just turned 5 and have been told he has ASD by the paediatrician but have to wait up to a year to get an official diagnosis.
This is just the start of my frustrations,anger,sadness for my beautiful little boy.
My frustration is having to wait so long before he can get any help (although he did get to see a speech therapist for the first time today).
My anger at my in laws for passing this gene on (his uncle and first cousin both have it but don't seem to care) I can't talk to my wife about my feelings about this as she gets all defensive and I am left to bottle up my anger.
And my sadness that my little boy probably won't grow up to live the normal life that others take for granted.
His uncle as mentioned above is 22 had never had a job ,a girlfriend or any sort of life whatsoever he just stays indoors 24/7 doing absolutely nothing, my fear that my son's life will mirror his uncles fills me with nothing but sadness,dread and fear for his future years.
My son is glued to my side and at times it feels like I am a single parent as he only wants to do everything with me and not my wife which upsets her immensely and no matter how hard we try for him to interact more with his mum he's just not interested.
Appologies for the ramble but it just seems as I'm the dad I should be strong, aloof almost and on the outside I am but on the inside it's turmoil and my frustration is about to burst
Hi rancid,
I think your feelings are pretty much a mixture of fear and mourning for what should have been - I've been there and got the T- shirt! I remember asking our paed (when our daughter was 3) whether she would ever be capable of getting married! I also remember trying to work out who was to blame! We all start off wtih hopes and dreams for our children and when we are faced with a different journey it feels scary and confusing.
Our daughter, now 15, has had a rocky ride because she wasn't diagnosed properly hence we inadvertently made a lot of mistakes ( she was diagnosed last year)- you have the advantage of knowing that your son has ASD and you now need to spend your time and energy researching and finding the best place for his schooling - I think there is more awareness of ASD than there was 10 years ago, but you need to push for help and support and be the best advocate for your wonderful son. With the love and support and appropriate help ,your son I'm sure,will have lots of strengths and will surprise you. You will learn together.
Access courses for parents of ASD children- you will mix with other parents in a similar situation and be able support and learn from each other. Parents of 'normal' kids probably won't be able to understand your worries, so don't become isolated - get involved with a group that do understand/care. Look for courses & help in your area or ring the NAS to get some more help. If you are armed and ready with strategies to support your son you will feel happier and more in control. This forum is also really supportive if you have questions that you need answers to.
Your brother in law may have coped better if he had had the right support when he was younger ,so try not to compare your son - every body is different and as they say, the spectrum of needs is wide.
Our daughter is doing ok at the mo- in maintstream but with some support - she has definite strengths and we focus on the positives. Life is good at times, hard at others - you will find your feet I assure you ! Best wishes Y.L.