Accepting your child as is and being Happy

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I would like to know from other parents their experiences in accepting their child and being happy with them, and them being happy with you.

Are there some people who did not struggle with this? What was your viewpoint and where was your inner peace derived from? I've seen other parents with an intrinsic positive attitude towards the situation I appear to lack in some ways. I would love to be enlightened sincerely with your wisdom.

Parents who also are struggling with this and have overcome this feeling, can you please share your experiences?

I love my daughter very much, but I am getting choked up all the time, and cry every night. What seems to be triggering me today is reading, "dyspraxia is a lifelong condition," over the internet a couple days ago. First, I realized my daughter definitely has apraxia. Second, I am very sad that it is lifelong. I assumed it was something she would grow out of.

Between being non-verbal, having SIB's, and dyspraxia, I am now preparing myself to become fluent in AAC, and be her care taker throughout her life until my life is over... I worry about what comes after that too. I don't know why this makes me sad because I am more than willing to take this on. It just wasn't something I ever expected.

I suppose I thought if I went through with enough therapy in time, that I would be able to change her brain due to the research I read about EIBI re: brain plasticity primarily before the age of 4. Well, she's 4 now, and actually more "severe," for lack of better wording. I also realize how this perspective was flawed all along through learning about autism self advocacy. I want her to feel happy about her childhood and secure about who she is without anyone, including myself, ever trying to change her.

I feel for you. I understand. I also think it's perfectly normal to feel sad and to grieve that your child has these disabilities. Anyone who pretends to have never gone through that grieving process is faking it, in my opinion.

I think we grieve because we want our children to lead happy and fulfilling lives, and we are worried that it's going to be harder for them. It's completely unfair. We also have our own ideas of what "happy and fulfilling" means. That said, one thing that I've realized is that my child is different than me, his brain is wired differently, and his idea of happiness might be different too. I think I too used to think that enough therapy would somehow change him so that things were easier, so that he fit in better. Now, he is about to turn 11 and I've modified this idea. I've focused on what makes him special and unique. I no longer have the urge to change him, but I do want to help him learn skills that will allow him to live up to his potential, whatever that is for him, whatever it means to him. I am willing to see that this might be different than my ideas of what his potential look like. Still, I think parents all want similar basic things for our kids: to love and be loved, to find some joy in life, to be as healthy as possible.

There is no magic bullet for the good attitude. I think most people who get there do so after an emotional journey of sorts. Your daughter is still young and just the fact that you are reaching out with these questions is positive proof that you are on the journey. You will get there, because you care. In the meantime, go ahead and grieve, but try to spend at least equal time noticing the things that make her special and wonderful, and celebrate them. And above all, tell her outright that you love her for who she is. Tell her that she is unique and special and list some things that make her so. If she knows that you love and accept her then that will mean the world to her. Therapies can be very good, but don't let her think she is doing them because you are trying to change her, but rather because you want her to learn some skills that will be useful to her, which is true.

This has been very hard for me. I still struggle with this. Part of it is, that I feel they're NOT happy- when they're engaging in the SIBs, it doesn't seem like they're happy and I feel like it's not okay. It will never be okay until they are better. It will never be okay until they can communicate. I'm generally a positive person but this has been really hard for me. Hearing stories of high-functioning people tends to make me feel worse rather than better because that didn't happen for us. It probably never will. I hate that I'm so resentful.

It has gotten better for me as time goes on though. Part of it is probably just time- I can't imagine my kids any other way. If there was a magic wand to get rid of autism, and I waved, my kids would be not even my kids anymore, you know? That's not to say I wouldn't like to wave a wand to get rid of some things (e.g. head banging), but AUTISM does seem to be an integral part of my kids, and that's something time sort of gives me.

One thing I realised slowly is that what I think of as "good" isn't necessarily what they think of as "good". I can't possibly say that their quality of life is poor, because their experience of the world is totally different than mine. They don't like a lot of things that I like, so why on earth would I think they don't like things I don't like. That doesn't make sense. I'm sure there are things they like that I don't like- it has to work both ways. I don't know what the quality of their lives are, but I know they have people who love them and want the best for them, so it's probably not that bad. That's how I try to look at it.

I think to myself that every family does things slightly differently. This is just how we do things. And "this" involves tailoring things to how they "work". Our house is extremely autism-friendly. I try to do things everyday that I KNOW they enjoy and can do. It's good for them but it's also good for me, because it allows for more successes on their part and thus less depression for me. I think a part of their problem is that things in public don't work how they work. It's not a fault in them; it's a fault in the system. If you change the system then the fault is at least less (not completely gone but better). It's easier for me to accept my kids if they aren't always failing at everything.

I've been told many times that I'm so positive and people can't believe how positive I am. You'd never guess from my online persona, LOL. So I think maybe the people you're seeing are just good at pretending. I think it's hard for most parents- don't feel guilty for feeling sad sometimes because feeling guilty about everything doesn't help either and you are entitled to your own feelings. You know you love your kid and want the best for her. Maybe less hard for those who are also on the spectrum. I know my husband is a bit quirky himself and he took it less hard, but I'm not sure if that's just him, or partly due his potential autisticness.

I wish you luck.

I think some of it may come down to just accepting the disappointment. I had to live in it for a while, exist in my sadness and grief, and learn to accept the loss of the children I had imagined I'd have, and the life I thought I'd lead. It really did feel like a death to me. Not the death of my children, of course, but a death of an older incarnation of my dreams. But once I let go of all of my expectations, I found acceptance. I am not happy that my children are autistic. It is harder for them and harder for me. But, I'm not actively grieving it anymore. This is my reality, and it is what it is. There is still a lot of fun, laughs, love, joy, etc to be had in life, both with and without them, and at some point I just decided that I couldn't live the rest of my life without experiencing it in whatever form it came.

I guess what I'm trying to say is that for some of us, happiness came by letting go.

I relate so heavily to all 3 of you who've responded. It is a difficult grieving process to go through because it is not something that can ever go away nor be forgotten about. We live with our children everyday. There are struggles our children have like SIB's and being "absent minded," or just not environmentally aware, seizures, social maturity divergence, social acceptance, depression and self-esteem issues, dyspraxia, echolalia, OCD, self harming or dangerous stims, bolting behaviors, obsession with dangerous things like cars, trains and water -- when they wander and are then alone and not able to comprehend the danger, hypo and hyper sensitivity to all senses, synethesia, garbled senses like visual input and auditory input, difficulties with too much sensory information like conflicting noises with strong smells with high winds with high heats and with bright lights -- producing a garbled, distorted effect on senses which just happens sometimes anyway, digestion problems, eating problems, dyslexia, apraxia, aphasia, mutism, communication issues, pragmatic issues, contextual conversation misunderstandings, emotional regulation issues, sensitivity to schedule and routine changes, intense triggers with classically conditioned responses due to often larger sized right amygdala, having too many brilliant thoughts all at once, epilepsy of many forms, migraines, exotropia, exotropia, limited self-care skills, comorbidities and so forth.

While there are many strengths that make our children awesome and put NT's abilities to shame sometimes, there are also areas that make it harder to adapt and cope with a society that is flawed.

I have often too felt jealous of the "HFA," even though I myself am one. Not many people where I live are familiar with my daughter's set of behaviors. Her form of autistic neurodivergency is much more rare than the National Survey statistic of 1 in 50, which was IMO more accurate than the CDC's which uses the DSM that is sexist when looking for autistic symptoms, which I whole heartedly feel. Maybe her form of autism is more like 1 in 100,000 in gneral population (perhaps something like 1 in 50 autistic people, bad with math), considering that is actually a relatively small number for a county which usually has 10x as many people.

I am learning to let go and just be free, focus on our connection, not care what others think, and yes, spend more time, at least an equal amount, doing unstructured one on one loving time, or at least cognitively thinking of all their strengths and allowing them their own unique happiness -- be it harmless stims or watching movies on repeat.

Redbox, I have never grieved as I've never lost anything as far as I am concerned. Neither have my kids who both have Aspergers. They've alway had it and the diagnosis changed nothing except give us some understanding, which as far as my wife and I are concerned was a good thing. We couldn't lose what we never had.

There are difficulties and challenges raising all kids and some are easier than others. There will be plenty of kids out there that are far more challenging and have far worse difficulties, despite not having a condition to associate their issues with. We just know upfront what a large number of the challenges will be.

Don't get me wrong there have been plenty of tough upsetting days along the way. However that has been nothing to do with accepting the situation, grieving or anything like that. My kids get distressed or upset and then so do I, but that would happen if they didn't have ASD. Yes it creates more work than the average parent has, but so be it. It is what it is. ASD does not define my kids, it is just a part of them like their hand is. Life is full of challenges and along the way we learn to deal with most of them, that applies to everyone. Stay positive and don't focus on the label and it'll help you reach the positive outcomes. I hope that doesn't sound patronising of anything like that, as it's very much from the heart. I now sound like a hippy, and that's not me either

I'm reasonably content with my son when he's at home, although he is bossy and demanding and frustrating and sometimes outright rude. In public I am embarrassed for him and by him, though not nearly as acutely as I used to be (I think this may actually be due to a mild depression, but that's another story). During the school year, I am constantly reminded of the wrong things he is doing and the efforts the school is making to help him, which I am grateful for but also vaguely saddened by.

My son was diagnosis HFA and was considered pre-verbal right before he turned four. It has been just over a year. I definitely felt sad, guilty and overwhelmed at first. I still have times when I am sad and grieving for the life I wish for him or worried about his future, but it is much less. I think it takes time to processes and to do that you have to open up and accept that you feel that way which you are doing.

I would say the first and most important step was realizing that my son was the same kid that I adored before the diagnosis. When I knew he wasn't developmentally on point, but just thought he was a very smart quirky kid who wouldn't talk. I like most people had a good idea what classic autism looked like and even Asperger, but had no idea how wide the spectrum was. He loves hugs and smiles at me all the time so he couldn't have autism but he isn't speaking so he can't have aspergers. Clueless I know, but that is what I, my husband and the friends that I talked to about my son all thought.

I think the next thing that really helped that I let go of the guilt at not starting the treatments at 24-32 months when I first had some idea that he wasn't quite the same as other kids. Guilt is not going to help him or me. You start from where you are now and get help. This forum was really great for that because I met parents who got the diagnosis at many different ages and realized though 4 might not be ideal to start therapy that even as late as 6 or 9 treatment was really helpful. I hadn't ruined my kids life because of the extra year to let him try to talk on his own with only us working with him. Your daughter is 4, that is still young. You have no reason to think that it is too late for her. My guy started treatment at 4 and has had amazing progress in this last year. Other people have started at 6 and had the same amazing progress.

It is so hard for your child not to be able to speak to you, I know. But that doesn't mean that don't communicate. You can't get confirmation if they are sad or hurt. I found it really scary to think I wouldn't know if he was hurting. As grateful I am that my son is now speaking, he never wasn't communicating. There is every reason to believe your daughter will speak, but if she doesn't, there are many ways she can learn to communicated with you. Story after amazing story has shown that these kids if we give them the chance will communicate with us.

One thing all those assessment did right was make you write down all your child's strengths. I am sure your daughter is an amazing little girl. All those big words and the big worries around them you face can interfere with you getting back to that. Do what make you both happy every day and write a list of everything that is awesome about her. When you are struggling to get past the alphabet soup that will drag you down, think about it or reread it. It helps me.

I will try to refrain from speaking as if I know what you are experiencing; I don't. A lot of people thought I'd crash and burn (and a few thought I'd end up homeless and ultimately dead in a ditch), but I don't think anyone ever wondered if I would move out and at least attempt to care for myself.

They always knew I wasn't right, but I gave them all kinds of reasons to be proud and glad and brag and hope and all that s**t, within the conventional framework of society.

I can't tell you where you are going to end up, or where your daughter will end up. I don't know.

Here's what I DO know:

-- You have already found what DOESN'T work. Following the conventional clinical wisdom has done nothing but make you both miserable, drive a wedge between you, and set her back.

-- If their advice doesn't work for your kid, there's a pretty good chance that their timetables also don't apply to your kid. That's frustrating... and liberating. You, and she, will get there (where-ever there is) when and how you get there. It would be nice to have a clearly marked route, with a timetable at least as accurate as MapQuest. OK, you don't. You're explorers.

-- You have brains enough to know it didn't work. That augurs that you'll have brains enough to recognize what DOES work when you find it.

-- You love this kid, and you are committed to do the best you can by her. Therefore you will find what does work. What that might be, or how far it might take her, or when, I don't know-- but I have full confidence that you will find it.

I wish you all the luck in the world.

I think my turning point came when my daughter told me she was happy the way she is. Before that moment I was concerned that she was unhappy, but unable to express it because she has such a hard time expressing her emotions.

Once I had confirmation from her that she didn't want to be social with a bunch of people and didn't want to be like the other kids I was able to relax and enjoy her as she is.

I also went through a grieving period for the child I thought we would have, but a wonderful autism teacher helped me realize that other parents don't get the kids they expect either - just because a child is NT doesn't mean they are the person their parent expects.

'Life-long' condition phooey! It might be a life long condition. It might not be. I hate these 'experts' who write this stuff.
I have two children, one a teenage daughter who had Developmental Dyspraxia. We have done a lot with my daughter in the years since her DX, OT type things but most probably years of ballet being a totally key thing for her, which she is still doing. She has GREATLY improved, the other day I watched her somersault off a trampoline and land on her feet, which is something I never expected to see, and which I've never managed to do. Thats a big difference from not being able to stand on one foot at age five! The only hint now is that her hands don't quite make the right shapes when she is doing her ballet or manipulating things and her handwriting isn't the best. So yeah I guess she still has Dyspraxia, but it is not disabling like it was.
At the most basic I would really encourage you to find some forms of movement achievable for your child that they like doing and keep at that. It'll be slow progress or it will seem like no progress for years. But it will be happening. Also consult an OT to start with and do what we did which was to see all the stuff they did and then do that sort of thing at home (OT done by a professional is expensive).
For a similar reason and much to my mothers chagrin I turn a blind eye to my son running around on the couches and jumping off them and onto things.
Yeah, and get a trampoline.


Your child is only young, I know it is a big worry, but often things get better. My other child is nearly eight, non-verbal and not toilet trained. He appeared to spend years looking through me, and oblivious to many things. Once his only form of communication was SIBs or hitting us.
Now he uses an iPod with basic AAC, and any SIBs due to frustration are years gone. I want him to learn to read and write/type. Maybe he won't but I really do expect him too. My big thing for him is communication. I really really really, want him to be able to tell people when something hurts and where. And to go on the toilet and stop sneaking down the garden to go in his pants, lol!
From about 3 to 6 was the hardest time and I remember thinking the same as you are thinking now. I even wished I may have had a different child, I'm ashamed to think that now.

"Acceptance" for me is a daily goal. DD, age 12, has been diagnosed with Asperger's for a couple of years now but I have worked on my ability to accept her differences for far longer than that. Some days are better than others. I am a Type "A" neurosis personality.

Like someone else said, I had a turning point several months ago when she made it very clear to me that she would never be like me, and I would just have to accept that. Just that single statement from her allowed me to let go of what I would never have. Ever since, I take it one day at a time. I continue to push her outside her comfort zone as well as pushing her to excel, but I now have realized how to quickly identify where her limits are. Previously, I pushed for the "A" grades, pushed for the perfect behavior, pushed for the normal socialization... and she would have big meltdowns. I still push for her to be the best she can, and make it clear societies expectations. Goal for us is her to eventually be able to lead as close to a normal independant adult life as possible. So far, so good.

I think all and all it is all about her and I accepting each other for who we are. I accept her and all her quirks, and she accepts me and all my neurosis'.

This guy will fall asleep soon and wake up with SUCH a headache.

^^^^^This! HAHAHAHA! Hehe.