Any super high-achieving parents devastated by their SN child?

[Anonymous]

I understand where you are coming from. My husband and I are both high achieving and with 2 SN kids it is hard navigating extra challenges on top of the usual kid ones. The journey never ends, and I feel like I can never die otherwise who would look out of them?

We're doing everything we can now while they're kids to help them be as functional as possible in adulthood. It is a journey itself figuring out services, treatments, etc...With us having connections in the medical community, it has helped get them the care they need quickly so that's been a plus. We've managed to save so we can provide them a trust to at least cover basic needs if they can't be gainfully employed.

Now that I'm years from the diagnosis, I think of the Kubhler Ross Stages of Grief: denial, anger, bargaining, depression, and acceptance. I'm between the depression/acceptance part, and it took a long time to get there. That's ok.

[Anonymous]

Anonymous wrote:My NT kid is the only reason why I don't hate parenting. My SN kid is nothing but hard. SOmetimes I wish he were non-verbal, in a wheelchair like the kids I see in the videos. Nobody sees how horrible he is to us. How difficult he makes everything. I have poured so much into him and he's just mean and difficult 80 % of the time. The other 20% you see that he can be nice/competent when he wants to be. So I keep putting in effort to change that percentage, to little effect. I am effing exhausted.

The flip side to this is that I feel like my other child's needs have to be out on the back burner because just the basic needs of my child with ASD are so severe and time/resource-consuming. It's been incredibly unfair to him.

[Anonymous]

Anonymous wrote:OP, here, thank you all for your words & ((hugs)). Her disability is ASD and intellectual disability due to genetic defect. I do pray and offer thanks for her each night as I truly believe she has taught me so much more than I will ever be able to teach her, but it still hurts, and I wish I could stop longing for a mini me that will never be.

Are you involved in the ASD community? There are parent/children outing groups and support groups. You NEED to join. Especially as your child gets older. These groups are resources (you’ll learn how much the county, schools, etc don’t want to offer anything or make anything easy for you), friendship, and support from others who walk this path. As your child gets older and you see your friend’s kids of the same age excelling, you will want to “be with your people” who can understand the heartache and challenge.

[Anonymous]

Anonymous wrote:I understand where you are coming from. My husband and I are both high achieving and with 2 SN kids it is hard navigating extra challenges on top of the usual kid ones. The journey never ends, and I feel like I can never die otherwise who would look out of them?

We're doing everything we can now while they're kids to help them be as functional as possible in adulthood. It is a journey itself figuring out services, treatments, etc...With us having connections in the medical community, it has helped get them the care they need quickly so that's been a plus. We've managed to save so we can provide them a trust to at least cover basic needs if they can't be gainfully employed.

Now that I'm years from the diagnosis, I think of the Kubhler Ross Stages of Grief: denial, anger, bargaining, depression, and acceptance. I'm between the depression/acceptance part, and it took a long time to get there. That's ok.

Kubler-Ross was meant for terminally ill patients.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, here, thank you all for your words & ((hugs)). Her disability is ASD and intellectual disability due to genetic defect. I do pray and offer thanks for her each night as I truly believe she has taught me so much more than I will ever be able to teach her, but it still hurts, and I wish I could stop longing for a mini me that will never be.

Are you involved in the ASD community? There are parent/children outing groups and support groups. You NEED to join. Especially as your child gets older. These groups are resources (you’ll learn how much the county, schools, etc don’t want to offer anything or make anything easy for you), friendship, and support from others who walk this path. As your child gets older and you see your friend’s kids of the same age excelling, you will want to “be with your people” who can understand the heartache and challenge.

How do any SN parents have the time or energy for that?

[Anonymous]

I give you big hugs OP. I think I was feeling the same way when my DC was first diagnosed, but I realized that I have to meet my DC where they are and love them for what they are. Yes, I mourned the letting go of the potential high-achieving child, but realized they will be the best they can be. Things could be better, but they could be oh so much worse. I also recommend watching this documentary. It really helped me put things in perspective https://www.imdb.com/title/tt6848736/ "Far from the tree".

[Anonymous]

OP, you need to let go of your own story.

The ‘super high-achieving’ label is not very meaningful. Be proud of what you may have accomplished, but please separate that from what your children owe you. They are different people.

[Anonymous]

Anonymous wrote:I know it's not easy for anyone to have a SN child or obviously for the child, but I feel especially sorry for my kid partly b/c I hate myself for feeling so disappointed in DC- she may never even learn to read, will never go to a normal school, will never have a truly meaningful conversation with another human being. As a super high achiever (every academic honor you can think of - Starting at a very early age being G&T, talented musician, lead role in school plays, HS Valedictorian, NMSF, summa cum laude/PBK graduate, and now a great career) , I find it just so hard to relate to my own child. I love to read a book to her, but she never even seems to look at the pages. I try to enjoy bath time b/c she likes the water, but I hate changing a diaper on someone who should have potty-trained years ago if she were "normal". I always imagined having a child whose abilities, interests would be like mine, but now I have a child I love but have difficulty enjoying and relating to. Do others have these feelings? It's one those days when people in the office are discussing which elite school their kid is applying, etc, and I have to hold back my tears.

OP you can be devastated. And it sounds like your child is still young. Some parents find solace in Emily Perl Kingsley's short story "Welcome to Holland." (Personally, I hate that story.) I think the urge to see one's children as carbon copies, or to live vicariously through them, is an unfortunate phenomenon of this generation. It reflects a lack of imagination or understanding about the vast diversity of this world. Your office mates' kids still need to make their own way in life. Whichever elite school they get into, or don't get into.

If you grew up in G&T programs and went through the highest education and career tracks, you already knew you were different from most people. So your child won't join you in PBK and to star in a school play. But scholarship and the arts are still important. Your rarified existence will give you quicker access to the research studies, social contacts, professional network, cognitive flexibility, resilience and humor you'll need to raise her.