If You Have a Kid With ADHD, ASD, Special Needs, or is Otherwise Difficult

[JumpyTheFrog]

If you have a child that is very difficult due to ASD, ADHD, or other various problems, do you ever have a tendency to feel like you "should have known" that saying XYZ would lead to them throwing a fit or starting an argument? How do you avoid blaming yourself for them getting worked up over something a normal kid wouldn't get so upset over? 

[PeterPan]

Do you honestly think it was your fault?

In our house I get blamed for my ds' behaviors, but I don't tend to blame myself. I know I'm a rational adult and neither chemistry nor neurodevelopmental differences that result in misunderstandings or behaviors are my fault. 

I do attempt to do *better* and books like this help https://www.amazon.com/Stop-That-Seemingly-Senseless-Behavior/dp/1890627763/ref=sr_1_3?dchild=1&keywords=stop+that+seemingly+senseless+behavior&qid=1631907762&sr=8-3

Your assumption here seems to be that it's your fault they reacted the way they did. Their social thinking deficits or lack of self regulation and self awareness are at fault, not you. Put the blame where it actually belongs.

Don't you think you already walk on pins and needles and eggshells and all that trying to be careful? 

Do you think your person has changed developmentally and you need new tools?

Edited September 17, 2021 by PeterPan

[kristin0713]

27 minutes ago, JumpyTheFrog said:

you "should have known" that saying XYZ would lead to them throwing a fit

It's not your fault. They need to learn to navigate life with people who will not cater to every meltdown and develop appropriate coping strategies.  My DD has significant OCD, and one thing I have learned is not to accommodate her because that will make it worse in the long run and prevent her from working through her issues. 

[gardenmom5]

Time.  experience.  He was different from infancy - I don't even have any friends who had a baby like him.  He made me feel like a failure every day.  Sometimes multiple times a day.  I'd slowly find things that worked for him.  (He LOVES his karate break boards for when he's angry.  doesn't use them much anymore, but you can hear them break from anywhere in the house.  Colors correspond to difficulty of breaking.)

A mini-tramp/rebounder was also helpful when he was mad.

but I had to learn to just let somethings go. 

To not care what other people thought/said - including people on this forum who made incredibly unaware stupid comments.  

I ended up just giving him more space - because anything less wasn't making anything better. I tried to make sure he had a place he could go and feel safe when he was overwhelmed. - and I had to have somewhere to go when I was overwhelmed.  (I once locked myself in the theater - and HE was the one who kept trying to come in!   everyone else - only tried once. - they were all concerned about mom.)

I also had to learn to nurture myself - as it was hurting my health.

Edited September 17, 2021 by gardenmom5

[Resilient]

Not anymore. And I'm past tired of other people blaming me--or themselves--for the way my child responds (abnormally) when he is not willing to do any work at all to make things better.  

 

[Melissa in Australia]

Hugs

i never blame myself but very occasionally in moments of great frustration dh hints that my insisting that I get treated with respect( not allowing myself to be hit, spat on and called a stupid old woman) maddens said child and increases child’s anger towards me. 

[Zinnia2]

Yes.

I internalize every explosion.  I kick myself for every year we've spent homeschooling, wondering if it was the right choice, and if public school would have made a difference (spoiler alert...it wouldn't.....one of my explosive kids has been in public since 4th grade.  Another explosive kid is at home.  Both much improved, but both still have explosive tendencies).  I beat myself up about it a lot.

I'm better than I used to be.  No one even knew how bad it was for years because I internalized the "bad mother" idea, and I didn't share freely because of shame.  Almost all of the explosions happened at home, mostly directed at me, and I think for many years, my husband didn't even realize the full brunt of it.  Now, I have people I share with.  I have worked through a lot of things.  But I'm still a work in progress, and I often think that if I was just better at mothering, they wouldn't be like this.

[JumpyTheFrog]

5 minutes ago, gardenmom5 said:

He made me feel like a failure every day. 

I wouldn't say I feel like a failure every day, but it is regular enough. Two weeks ago DH finally agreed to letting DS15 try medication for his ADHD. Waiting for the doctor's appointment Monday to get a prescription feels a little like waiting for a life raft floating toward me to arrive.

[JumpyTheFrog]

I find myself thinking things like, "Why would anyone want a large family? What if they ended up with 2+ difficult or special needs kids?" Fortunately our second child is very different and serves as a reminder that we aren't total failures as parents.

[Carrie12345]

I mean… yeah, I guess I have done/do do that, but I don’t usually take it to heart. More like, if I drop a plate I’ll ask myself WTH is wrong with me. But I know the answer is that I’m human and we all bleep up.

(And sometimes the answer is that my neurological differences are difficult, lol.)

The world is imperfect. 

[PeterPan]

14 minutes ago, JumpyTheFrog said:

try medication

Plus counseling plus OT for self regulation and self awareness. 

 

[PeterPan]

20 minutes ago, BetsyT said:

I kick myself for every year we've spent homeschooling, wondering if it was the right choice, and if public school would have made a difference (spoiler alert...it wouldn't.....one of my explosive kids has been in public since 4th grade. 

Yup. And then the if I did meds differently (take him off what is sorta stable, try a different mix) things would be better. Some of that just has so many unknowns.

20 minutes ago, BetsyT said:

Almost all of the explosions happened at home, mostly directed at me

Yup, two concussions here. I'm finally getting HBOT for them (and the other bonus concussions). I used a trauma counselor who taught me to do TRE (trauma/tension release exercises). At first it was for my own childhood and early adult experiences, but then I realized it helps release the strain of dealing with ds, sigh. 

 

[PeterPan]

23 minutes ago, BetsyT said:

I didn't share freely because of shame. 

The church is completely crap unhelpful on this. I've had people tell me he's fine with men, that I'm the problem, that they'd tell me how to parent or discipline him better, on and on. So done with it. People who haven't done it have NO CLUE.

[PeterPan]

19 minutes ago, JumpyTheFrog said:

I find myself thinking things like, "Why would anyone want a large family? What if they ended up with 2+ difficult or special needs kids?" Fortunately our second child is very different and serves as a reminder that we aren't total failures as parents.

Well it does happen that someone has 3,4, 5+ kids on the spectrum, sure. 

Fwiw, I think the whole this kid turned out fine, this one didn't thing is a bit deceptive. I've run my genetics and theirs, and basically my mix of defects (which are passable, tolerable, I could do college and grad school with zero problem, got married, etc.) SPLIT between my kids. And the defects in isolation, not merged together, are actually debilitating. My ds will struggle to live on his own, probably never marry, on and on, despite a quite bright IQ. 

I was no worse parent with him. It was just how the genes worked out. That's when I get really theological and tell myself nice things (about God knowing us in the womb and having a plan) because otherwise I ain't got no answers on that one. 

[Terabith]

Neither of my kids are difficult now, but they've both definitely gone through stages where they were challenging, and my youngest was intensely anxious in a way that completely consumed our lives before she was medicated (at the ripe old age of five).  

While I never would SAY "You should have known that would set off a meltdown," I certainly THOUGHT that at various people who knew her well and towards myself when I inadvertently triggered one.  

[prairiewindmomma]

I sure as heck don't blame myself for their behaviors. There are times when I think, "Man, I should have anticipated that child might be triggered by this situation." I know what a lot of the triggers are. I can list them. I find myself bracing at times because I know there is a likelihood things won't end well.  I actually block my schedule during the first two weeks of any new significant routine change (ie--school starting). I just know that we are going to need a lot of downtime and grace. 

I also know that we all adapt and move on and that things are so much better than they used to be.  I also know that I need some respite time to cope with the significant strain that parenting non-NT children puts on me. Date night, me time, all of that---I do not apologize for it at all.  No one should expect any rational adult to go through what we go through without needing some respite time.  Anyone that tries to tell me differently will be......educated. Additionally, bringing people onto the team---doctors, therapists, and public schools are all ways in which our personal load can be lightened.

Edited September 17, 2021 by prairiewindmomma
grammar--caffeine ran out :(

[Tap]

I don't blame myself, but it definitely takes an emotional toll on how I feel about my abilities as a parent. I feel like the wrong parent for her sometimes.

 

We are at the absolute extreme end of this right now and I really think she needs to go somewhere else for a while to be parented/mentored by someone other than me. I don't mean that in a sulky way, just that I am honestly no longer an effective parent for her.  She refuses to do any work with a therapist. She refuses to talk about her feelings. BTW... DD14 is completely verbal and has had extensive BT and OT to work through verbalize her feelings. She has the vocabulary to talk about them, she just doesn't want to do anything that makes her feel uncomfortable. I have felt this way before, and things got a bit better, but I am at the verrrrrrrrrrrry end of a threadbare rope. 

 

 

[Resilient]

5 minutes ago, Tap said:

I don't blame myself, but it definitely takes an emotional toll on how I feel about my abilities as a parent. I feel like the wrong parent for her sometimes.

We are at the absolute extreme end of this right now and I really think she needs to go somewhere else for a while to be parented/mentored by someone other than me. I don't mean that in a sulky way, just that I am honestly no longer an effective parent for her.  She refuses to do any work with a therapist. She refuses to talk about her feelings. BTW... DD14 is completely verbal and has had extensive BT and OT to work through verbalize her feelings. She has the vocabulary to talk about them, she just doesn't want to do anything that makes her feel uncomfortable. I have felt this way before, and things got a bit better, but I am at the verrrrrrrrrrrry end of a threadbare rope. 

A friend who is truly a wonderful person with a good life and great family...NOW...had to go away to live with another family in her teens.  No one was awful or mean...the way she says it now is beautiful: "I just couldn't come of age in my parents' home."  She had to do all the crazy rebellion stuff and they couldn't deal with it but this other family could--she was not THEIR daughter...

She says now that she knew even at the time that her parents loved her and were doing the best they could for her.  It just didn't work.  

My sympathies with you.  I hope you find a way forward.  It gets old beating yourself up.  

[kbutton]

3 hours ago, Terabith said:

While I never would SAY "You should have known that would set off a meltdown," I certainly THOUGHT that at various people who knew her well and towards myself when I inadvertently triggered one.  

This.

Before my kiddo was diagnosed, I found things that worked that I now know were valid tools. It did make me irate when people would circumvent totally legit tools when letting me use those tools was no skin off their nose. The rage I feel inside about that is pretty over the top. People could do just ignore what I said and undo DAYS of work and set off DAYS of insanity in my home by just being cavalier about something that should be a non-issue. 

I get that the kid's issue is the kid's issue, but when something works, and someone goes out of their way to circumvent that...there are just no words.

[Rosie_0801]

Brains are weird, trauma is weird, neither are character flaws, and we do the best we can do.  

[PeterPan]

15 hours ago, Tap said:

I am at the verrrrrrrrrrrry end of a threadbare rope. 

Fwiw, we did send dd away early to live with a friend. We were maxed out with ds' severely challenging behaviors and she was having her own (age typical) issues to sort through. It didn't solve any of her problems, so that's the downside. But it got us the ability to focus on ds and deal with his issues, which we needed. I like @Resilient's point that sometimes it sorts out over the long haul. I think trust yourself to make the best choice and if you make a choice to send her away do it toward and end that results in problem solving. 

I think it was @Storygirl who mentioned this book, and it has been my nightstand reading. https://www.amazon.com/Stop-Medicating-Start-Parenting-Solutions/dp/1589791339/ref=sr_1_3?dchild=1&keywords=stop+medicating+starting+parenting&qid=1631980999&sr=8-3  It has a frankness I hadn't heard elsewhere and some strategies that helped here. May or may not be helpful to you.

My dd is now 22 and at this point her problems are hers. It's a sticky stage when the problems feel like they're ours (because the consequences are) but the issues are becoming theirs. Some people just have really nasty chemistry, and I can't say that people at 22 have any more brilliant hindsight than they did foresight at 14/15, lol. My dd remains mostly omniscient though now with occasional glimmers of humility. She just spent a week with me, so we're fine. It's just tricky to sort out, when problems are going to continue, which problems are yours and which are theirs, and how we make sure the consequences are theirs. We want to make everything better, and sometimes we can't. Sigh.

Edited September 18, 2021 by PeterPan

[Tap]

11 hours ago, PeterPan said:

Fwiw, we did send dd away early to live with a friend. We were maxed out with ds' severely challenging behaviors and she was having her own (age typical) issues to sort through. It didn't solve any of her problems, so that's the downside. But it got us the ability to focus on ds and deal with his issues, which we needed. I like @Resilient's point that sometimes it sorts out over the long haul. I think trust yourself to make the best choice and if you make a choice to send her away do it toward and end that results in problem solving. 

I think it was @Storygirl who mentioned this book, and it has been my nightstand reading. https://www.amazon.com/Stop-Medicating-Start-Parenting-Solutions/dp/1589791339/ref=sr_1_3?dchild=1&keywords=stop+medicating+starting+parenting&qid=1631980999&sr=8-3  It has a frankness I hadn't heard elsewhere and some strategies that helped here. May or may not be helpful to you.

My dd is now 22 and at this point her problems are hers. It's a sticky stage when the problems feel like they're ours (because the consequences are) but the issues are becoming theirs. Some people just have really nasty chemistry, and I can't say that people at 22 have any more brilliant hindsight than they did foresight at 14/15, lol. My dd remains mostly omniscient though now with occasional glimmers of humility. She just spent a week with me, so we're fine. It's just tricky to sort out, when problems are going to continue, which problems are yours and which are theirs, and how we make sure the consequences are theirs. We want to make everything better, and sometimes we can't. Sigh.

I hope we get to the point that we can have a relatively normal relationship. but right now, I am not certain we can. She is genetically my great-niece and has been with me since she was 5mo. She is my sister's daughter's daughter. My sister and my niece (dd's mom) both have significant mental health issues and act similar to dd14. Each generation seems worse than the previous one. My relationship with my sister and niece doesn't exist, so I think it may end up being the same with my dd, once she is on her own.

I am legally dd14s guardian. Every year I have to write a letter to the judge saying why she should stay with me. This year, I am trying to decide what to write. I can request the guardianship be revoked, but then she will go into foster care for the next 3 years until she is 18 and then age out. I hate that idea, but I am to the point that I can't handle living this way any more. It is my very last plan, but unfortunately as I run out of ideas, that option is moving up the list rapidly.

I have been working to have her go to a residential program instead for a couple of months. They have a long waiting list, but it isn't chronological, it is need based. So the person with the highest need (emotional/behavioral needs--not financial) gets the spot. We tried this once before and never got chosen for acceptance because the spot always went to someone else. I thought the psychiatrist and her therapist was working to get the referral done. I hadn't heard anything in a month, so I called to check on the status. The facility sent a document request from her psychiatrist, and he didn't get it. So, all this time, the two of them have been waiting for the other to send documents. 😞 A month of time is now lost and we are just starting the review process. She is bigger and more violent now, refusing to attend school at all, and won't follow any household rules. I hope this behavior gets her bumped up the list. I am hoping that we can get her placed before she ends up in Juvenile Detention. Her actions over the past year, could have definitely resulted in that, but the person involved didn't want to press charges. If we can't get her into a home, she may need to be arrested to see if that is enough of a wake up call to modify her behaviors. 90% of her actions are under her control; those are the ones we are hoping to modify. She will always have issues outside of her control, and I can deal with those, just not a constant threat of violence over simple requests like "please put in a load of your laundry". 

Edited September 19, 2021 by Tap

[prairiewindmomma]

@Tap, my heart goes out to you. You all have made so many sacrifices over the years to give her every shot at success. Sometimes mental health issues and personality are just so self-sabotaging.

Do what you need to to survive and give yourself peace of mind. Success doesn’t always look like happy life at home. Sometimes you are gauging what the best odds are at keeping someone alive and out of jail. 
 

Where she is 14 and transition to adulthood is just a few years away, I think you are wise and to be commended for asking if this situation is working for everyone. It may be, it may not be, but I know you are in a hard situation no matter which way the knife twists.

[Melissa in Australia]

Huge hugs Tap

 

[Clarita]

I have an almost 5 year old, currently not diagnosed with anything. Yes I definitely sometimes feel like "if I hadn't said or expected XYZ maybe we wouldn't be in this 3 hour tantrum." So you aren't alone in those feelings. Even the if I was a more (fill in the blank) mother, I'd have this figured out or be able to handle it "correctly".

My saving grace is my second child who behaves more like the textbook child, when I set a limit for her (or say no) I get at most a 5-10min tantrum. Me acknowledging her feelings and singing a Daniel Tiger song about taking a deep breath and counting to 4 results in her getting on with her life.  It reminds me that most parenting books are talking to parents like my second child. 

(For the record, I do love and like both my children differently and at least pretty close to equally.)

[Rosie_0801]

2 hours ago, Clarita said:

I have an almost 5 year old, currently not diagnosed with anything. Yes I definitely sometimes feel like "if I hadn't said or expected XYZ maybe we wouldn't be in this 3 hour tantrum." So you aren't alone in those feelings. Even the if I was a more (fill in the blank) mother, I'd have this figured out or be able to handle it "correctly".

We've had meltdowns here over drinking water *while* the child was drinking water, because they forgot to drink water while they were drinking it.
And I'm not talking about a preschooler.

Sometimes there's nothing you (or they) can do. 

[kiwik]

Yes I do.  If I know that doing or something will cause a major problem and I keep doing it then I really should learn from experience.  This doesn't apply if it is an essential thing your are asking them to do or doing (putting on a seatbelt etc).

[chiguirre]

I think how much you work to avoid triggers depends on your child's level of function. With GW I work very hard to avoid triggers because he really can't modulate his response very well. I don't expect him to be able to live in an unsheltered setting or get a regular job, so there's not as much need to make sure he can withstand normal adult life. It's much more important to me that we can live together peacefully. With Geezle, I work more on him controlling his reactions because he will be able to get a regular job and live in an apartment in a community of disabled adults with minimum supervision. He is capable of meeting societal expectations and needs to do this to live up to his potential. I spend a lot of time explaining that mom and dad are people and that we should be treated with as much consideration as he'd give a room mate or a coworker.

[PeterPan]

2 minutes ago, chiguirre said:

I spend a lot of time explaining that mom and dad are people and that we should be treated with as much consideration as he'd give a room mate or a coworker.

I love this!! This is very good transition thinking. Definitely stealing this. 🙂 

[Not_a_Number]

1 hour ago, chiguirre said:

I spend a lot of time explaining that mom and dad are people and that we should be treated with as much consideration as he'd give a room mate or a coworker.

My kiddo is not special needs but she has serious flexibility issues. We spend a lot of times talking about this idea with her as well. I think it's really important. 

[BlsdMama]

I think you have an unreasonable expectation of yourself to be ABLE to prevent these things or foresee triggers. Make sure you tell yourself TRUTH. You’rea mom, but moms are just people. 
 

I have one really hard kiddo. The upside is that I reasonably know how I parent has worked out well in my neurotypical kids. The downside is that I tend to be upset with HIM rather than myself because he’s so unreasonable.  That’s not okay either. Sigh. Being a mom is hard. (((Hugs)))

[PeterPan]

1 hour ago, BlsdMama said:

The downside is that I tend to be upset with HIM rather than myself because he’s so unreasonable.

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  Trivia, but some of the social thinking profiles get a "social pass" and some most distinctly DO NOT. So we blame some people for their behaviors and excuse others. Op could even have that situation aggravating things, where the dc has deficits consistent with labels but the mix and how it presents tends not to get a "social pass" meaning kid gets blamed. Another kid doing the same behaviors might, with their mix, get a social pass. It feels very different and is an aggravating dynamic because with no social pass the person is blamed for things, held responsible. So a WISC and does *not* get a social pass and will feel much more infuriating and incomprehensible to work with than say an ESC, even if the deficits are much higher.

Edited September 19, 2021 by PeterPan