Please help! I'm scared about my child's future!

Hello,

I think I understand how you are feeling to a degree.

My Son turns 19 in April this year.

His Mum (my wife) died of cancer a few years ago.

He went to a special school and did GCSE's

He was supposed to start at a local college in September 2021 but did not attend due to anxieties.

He lives at home and never goes out anymore. Not for over 2 years now.

Just wears pyjamas all day.

He can talk and cook basic meals for himself, if I go shopping to get the meals or ingredients.

He was receiving dla but , of course, on turning 16 this ended and my son did not wish to apply for pip....so he receives no benefits ie pip or UC.

I feel I can leave the house to go to work 4 days a week (as a mental health nurse) as he can keep himself safe at home with using the cooker etc and can shower, change his clothing and change his bed sheets.

Spends a lot of time on his phone, watching YouTube, podcasts. Sometimes playing video games.

He does show an interest in current affairs.

I'm 52 now and obviously won't be around forever.

My wife had a better relationship with him and engaged and could communicate with him much more naturally and effectively.

I have come to realise a while ago that he will be living with me forever and i worry about what will happen to him when I die.

I do have a will and my older sister is executor of this, but I do not want her to be responsible for him once I die.

She has her own life.

I have another partner now who is amazing, but I don't want her to feel responsible either.

Although she says she will stay with me and is not put off by my situation, if i'm honest, i don't know if she will stay with me for much longer because of my home situation with my son and not being able to have the relationship she says she would eventually want with me. (Potentially living together and marriage)

If I knew I would be in this situation, I would not have joined the dating site and would have made the decision to remain single.

I admit that although i was a good and supportive husband for 17 years, I am a bad parent to my Son and that I cope by having my head in the sand and going shopping and going to work to dissosociate myself from the situation I am in.

Thankyou for listening.

Hiya my name is angel and I know this is an old post and you may not respond but I was just wondering. You said you spoke late? How old was you when you spoke I’m curious as I have a 2 year old that isn’t speaking. If I say ready steady he will reply with go and if I count to ten he will say 10. And that’s it’s really his quite smart I know In my heart that his autistic but I just want him to have a full life and be happy without all the difficulties of not being able to speak I’m praying he will one day but I was just wondering at what age you spoke?? Many thanks and thanks so much in advance for you time x

Hi NAS50301,

Thank you for replying to me, I find your situation really interesting and comforting.

I think my biggest issue is the unknown, currently we're jumping through the medical hoops to get my son formally diagnosed but the lack of answers anyone is willing to give and the length of the process is highly frustrating - yet I know there is nothing I can do about it.

My son had a tough start to his life so I also feel vastly responsible as his mother, even though I've been told numerous times that this is nothing to do with me so to speak.

As I mentioned to Muzzy who kindly also replied, I live and breathe for my son and both myself and my husband have said that we will solely invest ourselves to ensuring he always feels loved, safe and happy. I guess as his mom, that's all I can do!

Thank you again for taking the time to reply to me, it means a lot.

Natasha

Hi Muzzy,

Thank you so much for your words, it has honestly made me feel a whole lot better - even just knowing that you're not alone in this is so comforting.

I think my concerns about his future stems from the fact my son has already been treated differently. I have two nieces who are 4 and 2 (the two year old is 3 months older than my son) and my father-in-law already treats my son much, much differently than the girls. We have asked him why he doesn't make as much effort with my son and his reply was 'well he doesn't make the effort with me' or 'I cant get him to have an interest in me, what do you want me to do!?'.

While I know this is my father-in-law's issue completely, it was what started the worry and made me questions whether this is something my son will suffer with forever. Shows on TV like 'undateables', I've really taken a dislike to as they pretend to portray learning disabilities, autism and physical disabilities in this format as a 'look, see! even they can find love!' and in actuality they're only highlighting the differences in these people to what is deemed as 'normal'....in my opinion of course.

I live and breathe for my son and will ensure that whatever happens, he will feel loved, cherished and be happy

Thank you again for taking the time to reply to my post.

Natasha

Hello Nas66285

My name is Muzzy .

I'm a 34 year old mother of 3 sons , and I would like to first say how proud I am of you as a mother for asking for help with your little angel.

It's very important that you don't let your fears overcome you , and not all children with autism symptoms present in the same way.

identifying diagnosis of autism in boys is actually much more heard of and acknowledged by the experts who assess for autism in boys , so this itself means that your sons autism symptoms will be noticed by other professionals . Being a mother is the most hardest job in the world, yet the most equally rewarding job too. I honestly believe that all children and adults who have autism or any other disorder such as aspergers etc are gifted and are very clever children and adults , they just need extra support toward everyday functions , such as getting dressed , maintaining routines . There are many different ways that a parent can communicate with their young child who has autism , through sensory and through music , through facial expressions and even through sign language. I completely understand how concerned and worried you are about your son. I would advise you to research as much as  you can about your sons symptoms , also perhaps keep a video or written diary of your young sons interaction with you and with others , also a diary log of how he reacts to feeding time , to having his nappy changed , what sounds he makes , how he reacts to lights , to colours , to sounds, as this diary log of your childs daily reactions to the listed functions will give the hospital and any other medical professional that he has to be examined by a concrete visual and auditory as well as wriiten diary of your young sons everyday life reactions , then they will be able to get the ball rolling with the evidence needed to compare your sons suspected autism symptoms to that of the autism criteria threshold for symptoms of autism for diagnosis.

I hope this helps you in some way.

please don't apologise for the long post , and its completely standard for anyone who is fighting to get their sons symptoms diagnosed to be head deep in thoughts and concerns , and I'm so grateful to you for seeking help , as it takes courage to ask for help , and all the greats asked for help to excel in life .

remember nobody is perfect , and as parents we have to fight for our childrens rights , as they cant fight their own rights , but we must maintain our composure and protect the innocent future of tomorrow.

enjoy every second with your son , and if you are experiencing criticism from others regardless of friends or family etc , you just remember this is your son , your the one who carried him through the pregnancy gestations an the brought him into this world and you know your son better than anyone , so ignore anyone who brings you down by criticising you and those who don't offer any support , and enjoy the cuddles with your son , treat him the same way you would treat any child regardless of his symptoms  , as that's what every child needs , enjoy giving him baths ,  blow bubbles and enjoy your little sons reactions to it , listen to your favourite music and dance away , smile , laugh for you are doing great and you baby is connected with you.

kind regards Muzzy.

apologies for my misspelling I have blurred vision .

As a mum, I know exactly how you feel. Yet, as an autistic my concerns have come from the other side - I've had sleepless nights and sat and cried at the thought of my daughter having the predominant neurotype (PNT) aka 'being normal'. I guess we all think our own situation is better.

I'm a lot like your son. Spoke late, I'm not interested in socialising or having friends simply for the sake of it although I like to have a good look at people instead of avoiding eye. I'm grateful every day that I'm autistic. I'm a teacher, am married, have a 6-month-old and am working towards a PhD. I enjoy my own time when I'm alone and have a few good friends who would be there for me if I needed them. I'm really glad I don't crave social interaction and social acceptance as those I know who do have a lot of shallow relationships.

Instead of his neurotype, it is the attitude of those around him, as well as the role models he's exposed to that will make the greatest difference to his life.