NP here. I totally get it, OP. I may not be a super achieving type person, but all these feelings are still there. It's chronic grief; some days are better than others, but the grief is always there.
Yes, colleagues talk about their child writing names at 3.5 years, reading at 4, and on and on. Then there's constant feedback from therapists and teachers on what your child can't do. It wears me down a lot.
While I have become more empathetic to SN parents and children, at some level, in a weird way, my empathy for NT parents has gone down. So if a relative were to tell me that she is very stressed about which college her child would go to after HS, I find myself thinking "at least your child will go to a college. Mine may not." And then, I dislike myself for thinking this way. After all, that is a very legitimate concern for any parent to have. And then, I kick myself for not having enough faith in my own child and questioning whether she will make it to college. After all, we're the ones who have to be our kids biggest champions. It's hard.

Anonymous wrote:You don't have to be "super high achieving" to have these feelings about a SN child.

Who wouldn't be devastated by a SN child, whether you're an Ivy professor or a secretary? No one wants that for their kid. Are we now required to be so PC that we have to pretend we'd be fine and dandy with a child who is barely verbal, can't toilet herself, will never marry or have a job? Are we now "ableist" to want children who can live normal lives?

You don't have to be "super high achieving" to have these feelings about a SN child.

Anonymous wrote:Every parent has to give up the fantasy of their perfect child and love the child that they get. Real kids are tougher and more complicated than fantasy children. When your kid has SN, it's unbelievably tough to make that transition because it seems like there isn't much upside to make up for the fantasy that you are giving up. (Ie. "I didn't get a kid who is good at sports like I dreamed, but Larla is so talented at music!")

My child is 14 and doing very well and my husband still refuses to say that he has an ASD. He will not acknowledge it. The most he will say is "whatever Larlo has." DH was willing to do the work but he still can't acknowledge the diagnosis.

I also think parents of SN kids have to give up the perfect child fantasy much earlier than most parents who can imagine their son playing in the NBA up until that child is about 8 or 9. Hard to accept that 'whatever he wants to be' is almost certainly not going to be the case when a child is only 1 or 2.

A close relative has two kids: the older one is a hyper achiever, and one has a speech disorder, developmental delays, and seizures. The younger child will probably never live independently, although a minimum wage job in a service industry seems like an achievable goal. I enjoy talking to them both. We just talk about different things. The younger child is a very valued member of the family, and he has an infectiously sunny personality and a can-do attitude. He brings a lot to the table.

Every parent has to give up the fantasy of their perfect child and love the child that they get. Real kids are tougher and more complicated than fantasy children. When your kid has SN, it's unbelievably tough to make that transition because it seems like there isn't much upside to make up for the fantasy that you are giving up. (Ie. "I didn't get a kid who is good at sports like I dreamed, but Larla is so talented at music!")

My child is 14 and doing very well and my husband still refuses to say that he has an ASD. He will not acknowledge it. The most he will say is "whatever Larlo has." DH was willing to do the work but he still can't acknowledge the diagnosis.

I can relate in this way, too, as a high-achieving mom of a kid who is dyslexic and has mental-health challenges. DD is looking at a completely different range of colleges than her peers and I'm excited for some of the opportunities she has that will be just right for HER, but it is SO hard when others ask where we're looking, and then give me a blank stare when I tell them. OY, can't people just receive without judging? It gets tiresome and it wears me down. Not exactly the same as what you're going through, OP, but just saying I can relate. It's hard.

This is totally normal and part of the natural grieving process. You lost what you expected and, to top it off, you have to worry about the future. Don't feel guilty, but I do hope you'll find someone to talk to about this, because it is so normal to feel this way.

OP, I'm not as much of an uber-acheiver as you, and it doesn't sound like my pretty-dyslexic-but-otherwise-typical 4th grader has as many challenges as your child, but I wanted to tell you that I can relate. Once he was diagnosed and I realized that his struggles will likely be lifelong, I went through a rocky emotional period. Friends were talking about their 2nd graders reading Harry Potter, and mine could barely do See Spot Run. Therapy really, really helped me, specifically a therapist who practices from an ACT (Acceptance and Commitment Therapy) model. Through my work with her, I was able to figure out that because of my personality, talents, and family-of-origin stuff, I was biased to associate certain things with giving a person value (verbal ability, quick-wittedness, academic achievement, etc). If I held onto those traits as my gold-standard, I was going to spend a long time making myself, my family, and my child miserable. And I would miss out on all of the things that make him such a cool little human. It's been a process, but I am learning that if I don't buy into that framework, I can really appreciate all the things that make him and this unexpected version of my life really, really amazing in ways it wouldn't have been if he had been a "typical" kid. Also, I don't do this in every situation, but with my good friends, I've been able to share how I feel, that's it's really hard for me to hear them touting their kids' "accomplishments" when things are such a struggle for my son. Not to shame them or shut them up, but just so they know what is going on with us. Finally (and I think this comes with therapy, and with just getting older), I am giving less and less of a shit what other people think. Once I was able to shed my own judgements of my kiddo, the judgements of others carry less and less weight. None of this is easy. It's all hard, and my heart goes out to you!

Read "Love that Boy: What Two Presidents, Eight Road Trips and My Son Taught Me About A Parent's Expectations " by Ron Fourier.

Fournier's son has autism. He describes his book as a memoir about the causes and costs of outsize parental expectations.

Anonymous wrote:You should seek therapy for your resentments.

You should seek it for life for the deficiencies of character leading you to post using this tone. I'm completely serious. NP by the way.

OP, I think what you have voiced is what a lot of parents feel, though not always because they have a child with special needs. Some feel that way because their child got involved with drugs, or took on causes or a lifestyle that make them feel distant from the rest of the family, or became severely anorexic or decided to move to another continent.

All of us have moments of disappointment with our children for various reasons, high achieving or not. We all enter into parenthood with a certain set of expectations and when those aren't met, it's disappointing.

I don't think there is anyone who has had a special needs child that doesn't long for what it would have been like to have a different kind of relationship. You're just one of the brave ones who admits it.

Hugs, I understand.

As a mom with an ASD kid, the most devastating part is the fact that WE (the entire family) have been sprinting since DC was first diagnosed 7 years ago, but the gap between DC and typical peers are getting wider. I am not expecting DC to be going to Ivy League schools like myself. I am only hoping that my warm, loving, funny and hardworking DC doesn't need to struggle for the rest of life.

NP here. Please don't trash OP for just being honest.

Having an SN child is devastating for everyone, but yes, I think the superachievers have a very difficult time. It is they who most derive their value from accomplishments--and yes, there is some privilege there, but that's how they were raised--and their child may never be able to master the same types of things. Also, their "friends" and social circle will have the most difficult time accepting their child, because they are also people who define themselves most by their accomplishments. This will make for some lost friendships over time. (You guessed it....their real friends will stick by them).

Remember, OP, your skills will help your child immensely. You may not believe that things happen for a reason, but it's possible, isn't it? You are in a unique position to help your child and advocate for others. And you, in turn, will learn from them some valuable lessons about what really matters in this life. Take a look at past columns by George Will, who has written eloquently about this topic (his son has DS).

Good luck to you, OP.
--parent of a 25-year-old with SN

I understand op. I'm so sorry. It's hard because when two high achievers marry and have kids there is an assumption those kids will follow the parents. It's painful to let go of and it's painful to be reminded of it. We all want as a basic uniting idea to know that our kids will be alright without us at the very least. And it's so scary not to know if that is possible.

All of the kids of my colleagues are choosing between amazing colleges also. My husband and I are both ivy educated lawyers. I dont know if my son will ever be mainstreamed, and he has behavioral issues which are the hardest to deal with and are ostracizing. I feel lonely because I can't contribute to conversations my friends have about their typical kids. Even though I have a nt child I feel somehow out of the club. I went to a shower the other day and there was a game re advice to new moms and I almost cried because I just felt like what did I know I did it all wrong. I'm only sharing this to let you know I understand and I deeply empathize. It's painful and it's scary and uncertain. There is also a reward that parents get - I know mine did - of seeing their hard work or their interpretation of their hard work! Culminating in a happy accomplished child. I'm sure you're doing an amazing job.