I hate everything about having a child with special needs

[Anonymous]

I’d like an easy day for sure.

[Anonymous]

It's really really hard. I've been doing this journey with DH for over 30 years. It doesn't get easier but there are manageable days and weeks. DH and I are seniors now and there's no good residential option for our DD. We visited a group home with an opening and I cried myself to sleep that night thinking about DD there. I guess we'll revisit the ADU idea again even though we wanted to downsize now that DH is retired and we are having some health issues. Her only sibling is a "glass child" (learned that term on Youtube last week. I have the same thoughts as you but I could never do that to her sibling.

[Anonymous]

I’ve been to Holland and Holland is lovely. There’s nothing lovely about aggressive behavior. It’s a terrible poem to give parents with difficult children.

[Anonymous]

Anonymous wrote:I’ve been to Holland and Holland is lovely. There’s nothing lovely about aggressive behavior. It’s a terrible poem to give parents with difficult children.

I agree and I would honestly never send it to another parent as you never know what people are going through, even though I personally find it applicable to our situation.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’ve been to Holland and Holland is lovely. There’s nothing lovely about aggressive behavior. It’s a terrible poem to give parents with difficult children.

I agree and I would honestly never send it to another parent as you never know what people are going through, even though I personally find it applicable to our situation.

I'm glad because I received it several times from people who thought it would be comforting and inspirational. It was not.

[Anonymous]

Anonymous wrote:Yep. The part that pisses me off the most are these IEP meetings where they want to have us weigh in on her “post graduation plans.” My child is cognitively 9 months old, wears diapers, has no ability to communicate and zero receptive language. Why on f-ing earth do I have to sit here and pretend like she is going to bag groceries at a store or stuff envelopes at a day program??!!????!!! And why on earth does NCLB mean they have to pretend to give her end of grade tests that she literally gets a zero on??!!!???

Welcome to Syria where my child will eat her own poop and have a 7 times higher rate of being sexually assaulted. Welcome, indeed!!!

OP here. PP I immediately thought of you this morning when I read the Post. Horrible article about a woman in a facility who was raped and now the gramma has the kid to raise.

[Anonymous]

I'm so sorry, OP. We have a relative who is an older dad (nearly 60) who has found himself sole caregiver to two young girls on the spectrum now that he's widowed. It's really tough and I help when I can. I hope you have a support system.

[Anonymous]

Anonymous wrote:

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Anonymous wrote:

Anonymous wrote:im always in the minority on this board with this but i found the welcome to holland thing v helpful. YMMV.

Sure, except it’s not Holland. I booked a beach resort with waves and palm trees and got Times Square in the city that never sleeps with blaring sirens everywhere. My nerves are shot, I’m always ON and I have a pounding headache.

I feel like the holland thing is a good metaphor for regular parenting. I expected my kids would want to do X with me, I planned to share Y with them but then it turns out they hate x and y and so I had to get into Z instead. But the SN parenting sometimes feels more llle you got sent to a war zone — someplace that no one would voluntarily pick and which is filled with high stakes hazards and yeah maybe the country had some great underlying qualities if you could find a quiet moment when the bombs aren’t falling to explore those.

I think one thing that is hard about SN parenting and making connections is that the journey is so different for each of us. (Remember Tolstoy —- all happy families are similar, but unhappy families are each unhappy in their own way). My kid has made so much progress over almost 20 years —- but I know that’s not in the cards for everyone. The war zone metaphor does work well because some places are just in perpetual conflict, whereas others move to a place that is more likeable, and that change can be gradual or come in fits and starts. Everyone’s on a different journey.

OP, I hope we’ve validated your feelings and given you some confort. It is hard.

First line is spot on! My NT kid prefers country music to my 90s grunge, and sports instead of my museums and theater. So I suck it up and listen to country and ball games in the car. And I’ve developed an appreciation for those things from him. And that’s nice.

My ND kid requires appointments and tutoring and meds and a lot of 1-1 time and meltdowns and constant emails from teachers and feeling like I’ve failed in every way possible. And yes she has her own strengths and things I love but it’s not a matter of “oh, ok, not what I was planning but it’s still a great place that I would recommend to others”

I think it does apply to some ND parenting. It is where there is tension between parents of children with moderate and high support needs vs parents of children with truly low support needs. My ND child is definitely ND but she has very low support needs right now. Yes there are meltdowns and appointments but it is not all consuming. The Holland piece while still kind of cringe for me given what I know about what too many parents are going through, basically feels relatable for our specific situation.

I just saw this thread, and this Holland poem is getting to me.
I have a relatively low needs child. He is very verbal, toilet trained, driving, and even recognized as gifted. But he is literally failing out of high school and I’m not sure that he will ever be able to hold a job or live on his own.

My experience has been that people have kept insisting to me that I really AM in Italy, and the signs seem like gibberish because I didn’t study enough Italian. Fair enough. I didn’t study that much. And I can’t find the colosseum because I’m not using my GPS correctly or I’m just not understanding my guide books. Okay. Maybe my GPS is faulty.
And it took years to realize that I was actually NOT in Italy at all, and I wasn’t crazy.

[Anonymous]

I wish there were support groups where people could go and say these things to one another. Just to be in the company of people where you wouldn't have to worry about being judged or excoriated or put on a psych hold. There are groups for sex addiction and shopping addiction and Weight Watchers....where's the group--supported by an expert, in a field that should have its own specialty--for this group?

[Anonymous]

Same. The system is broken and there is no safety net. Just hoping no one forces my daughter to have a baby like the girl in the Maryland home who was just written about in the Washington Post. We really aren’t much better than Syria.

Anonymous wrote:Yep. The part that pisses me off the most are these IEP meetings where they want to have us weigh in on her “post graduation plans.” My child is cognitively 9 months old, wears diapers, has no ability to communicate and zero receptive language. Why on f-ing earth do I have to sit here and pretend like she is going to bag groceries at a store or stuff envelopes at a day program??!!????!!! And why on earth does NCLB mean they have to pretend to give her end of grade tests that she literally gets a zero on??!!!???

Welcome to Syria where my child will eat her own poop and have a 7 times higher rate of being sexually assaulted. Welcome, indeed!!!

[Anonymous]

Anonymous wrote:I wish there were support groups where people could go and say these things to one another. Just to be in the company of people where you wouldn't have to worry about being judged or excoriated or put on a psych hold. There are groups for sex addiction and shopping addiction and Weight Watchers....where's the group--supported by an expert, in a field that should have its own specialty--for this group?

We have one!
https://www.parentchildjourney.com/excursions/
Search for “Free Parent Support Group“

[Anonymous]

Anonymous wrote:I was not award that my DH is AuDHD, and so did he. He is high functioning, unmedicated and never diagnosed with zero therapies or school supports, and he is just a bit social awkward. Well, my 2 kids are both AuDHD plus extra diagnosis. Gene passed down. It is tough and I am jealous of other parents having easy kids and no need to worrying much. There are something that my kids may never achieve or enjoy or do due to their disabilities or capabilities, and I feel frustrated. Well, I think it that way. All I can help is try to get them to their full potential with their limitation. If I give up on them, no one would do or help them. I cannot help them down the road forever, and it is ultimately they are the ones that suffer the most.

If I knew that my DH is AuDHD, sorry, I would not have children with him because I would rather not to be born to be judged and suffered. Since it is too late, I just have to be brave and sucks it up to do my best to help them to grow. This week is teacher appreciation week, I am always generous to give out giftcards to teachers that help them.

Me too. I feel the same exact way.

[Anonymous]

I am sorry, OP. I've been there too.