How did other parents cope

and15

Hello I'm new here and am the parent of a beautiful little girl with asd and physical disabilities.she is 6 now but recently I hsve been thinking about when it all started with her diagnosis just after the age of 1 and still feel quite aggrieved and low about how her childhood has been affected by the constant medical interventions amd having to adapt her life to cope with the many challenges neurodiverse children face daily which makes me incredibly sad.i am just wondering how other parents cope with these feelings.thsnk you

Tori_Scope

Welcome to the community @and15 Thank you so much for joining, and for telling us about your situation.

I'm not the parent of a disabled child myself, but I hope that another parent will see your post and reply soon!

That being said, I can imagine that these feelings are perfectly normal. I imagine that you want the best for your child, and that it'd be upsetting to see her struggling, or having to go through medical interventions. 

Have these interventions improved her quality of life? 

I'm also wondering whether you might like to access one of our family services, such as Parents Connect. Does that sound like something you might find helpful? 

and15

Hi Tori thank you for commenting I am guessing many parents do feel the same along with a sense of loss and anger especially at the situation of seeing their loved one having to face additional challenges of everyday living which most kids don't hsve to as normal development.i would really like to know how other parents cope because at the moment it is hitting home and comes in waves.the interventions do help but with the asd it seems like,and I am sure all parents with asd feel the same,we know more than the "professionals" e.g everything they are suggesting to us we have tried or been doing for about 12 months before they suggested,that is very frustrating!!

CoffeeFirst

Hi and15, 
My daughter (young adult) has ASD and ADHD but was only diagnosed a few years ago. I often wonder what things would have been like had her diagnosis been made earlier.

In some ways it’s more beneficial your daughter was diagnosed so young, chance to get some good early interventions in place. I fully understand how you must be feeling, seeing her going through things other children her age will never have to navigate. Are there any Parent Support groups in your area you could join or even online, as a way of support? An opportunity to chat with other parents going through similar could make you feel less alone.

and15

Hi coffeefirst

Thank you for your post,I am guessing the biggest issues I have is upset over what u can see the challenges my little girl has to face over and above what neurotypical children have to face as part f development which is heartbreaking.secondly I am still grieving over not being able to have rhe relationship that all parents what with their child without having to be an always alert to spd/asd triggers first before being a parent .I did try a support group for parents and all I got was the same 2 or 3 voices whom only wanted to speak on behalf of the group from their own perspective and were not willing to listen without prejudice to others.similsrly I find that many of these "support" groups ultimately promise to deliver so much to secure funding but actually loose the purpose of what they are supposed to do e.g support the individual needs of the neurodiverse clients rhombus are members echo f whom will have slightly varying needs so I gave it a miss.but thank you for taking the time to comment

sam174

I’m a mum to 3 gorgeous boys, 10 (asd/adhd/anxiety/complex learning difficulties), 8.5 (asd/dyspraxia), and 2.5, suspected asd/adhd but such a smart cute little cookie 😊

I think it’s always hard to come to terms with how your children will get on in the world vs NT children. I don’t worry so much about my eldest in school as he attends a special school and will specialist in animals I think, but my middle child although very smart is very emotional and I think could struggle when he goes to secondary school due to differences in his likes/interests…. My youngest I have yet to see how he progresses but as we have started on the path to diagnosis and help from services I have high hopes for getting him the help he needs at such a young age so that it will make all the difference.

I try to discover their strengths and then build on that, what they’re good at, such as swimming, rock climbing, and keep encouraging them to do the best they can, turn up to everything and give them as many opportunities in life as possible to experience what they love. I’m a single mum and my life is all about them helping them achieve what they can. If I think about other things it makes me sad and that’s a slippery slope. I focus instead on the positives, the little wins, which become more apparent with age. 

Have you thought about seeking counselling at all to try to help you change the way you’re thinking? 

and15

Hi sam174

Thank you so much for your reply,I take my hat off to you you clearly do a phenomenal job for your family amd sijgel handedly amd it's good to hear from such a caring devoted parent woth personal insight.

I do see my little girls strengths you ae right amd work hard to support her and love her so much but the hard part is my own self reflection on my own about what she has to face and why she can't have it a bit simpler like NT kids her age.

I tried counselling but sadly it made me feel very much worse because the counsellor had blvery little insight into how LD issues can affect family life and perceptions