Struggling with my own emotional regulation and two SN kids

[Anonymous]

I will try to make this short. Kids are 3 with high functioning ASD and 7 with anxiety and ADHD. They struggle with all aspects of daily life - picky eating/not eating enough calories, stool holding, tantrums, fears, distractibility, difficulty with transitions, difficulty following directions, difficulty falling asleep, multiple night wake ups, etc. Every day I feel like my DH and I are pushed to our very limits just trying to manage and get them through the basic, structured daily routine we have. Both kids have specialists we work with who are following them and have had various therapies, assessments, etc.

I watch other parents of neurotypical kids and they get breaks, they work out, they can walk out of the room for a few moments without their kids fighting or destroying something, they can take their kids places without tantrums or embarrassing behavior, their kids eat food at restaurants or other people’s homes, they can get a full night of sleep, their kids poop normally without laxatives, etc. I don’t even know what that is like.

I feel like I have to be the Mother Theresa of parenting every day, and I’m emotionally exhausted. I have no extra resources to hire help, and extended family are all out of state and we have elderly grandparents who can’t help.

How do you guys do this every day? I feel like other parents are jogging a 5K every day in their parenting and each day I’m being called to compete in a marathon. I work so hard all day to try and anticipate conflicts and problems, keep kids on track, follow our schedule, etc. and then stay calm
through awful behavior (Eg sometimes my 3 year old attacks me, often the 7 year old screams and attacks their sibling or vice versa, the 7 year old will have panic attacks, the 7 year old gets disregulated and scream that we hate them or have a massive crying tantrum, etc).

I have no well to draw on for strength through this. I just feel like this is not what I signed up for, and it sucks, and that no normal adult could deal with this and not lose their sh*t every day. There is no space in this parenting journey for my needs, my husband’s needs, or our marriage and with the kids the way they are I don’t feel like this is ever going to change. How do you all stay motivated every day and emotionally regulated when it’s so darn hard?

[Anonymous]

I don’t have any advice to give that would be helpful. Just want to send some support and virtual hugs across the Internet. I’m
sorry you are going through this. You sound like a wonderful person and mother.

[Anonymous]

That sounds incredibly hard. My two kids have similar diagnosis but were much easier to care for at that age. Is it possible to hire a special needs trained babysitter occasionally so you can get a break?

[Anonymous]

It is SO very tough.

[Anonymous]

How do I do it? Meds. Meds for me. Meds for the kids. Sadly for all of us, I wasn't open to meds for any of us until HS. I wish I had done it earlier.

ADHD is highly genetic. Meaning, "if a child has it, there is a 50% likelihood that one of his or her parents does as well."

https://www.additudemag.com/is-adhd-hereditary-blog/amp/

I also was emotionally exhausted. A big part of ADHD is feeling feelings deeply and quickly and thus having difficulty regulating emotions. ADHD also has an impulsivity that means as a parent you can react quickly emotionally. Add to that rumination and rejection sensitivity - the teenage years were as terrible for me as for my ADHD kid because - guess what - I have ADHD too.

Meds - specifically Atomoxetine for me - really helped me become more even keeled - quicker to be able to settle after stormy seas.
Many people with ADHD benefit from both a stimulant drug and something to help with emotions or mood (zoloft or other antidepressant)

Also, please look into taking NAMI Basics class (which covers anxiety and ADHD among other mental illnesses but not ASD because ASD is considered a developmental difference) with your husband. Or look into NAMI support groups.

Shifting my parenting style from authoritarian to authoritative helped, along with an Adlerian style parenting class.

Changing my parenting goals also helped - their mental health and development on their timeline in their way are important - not keeping up with the neighbors' kids.

Is the 3 year old eligible for any kind of Child Find services or public school early development? It helps when kids are at school and you get part of the day in peace, although school eventually becomes it's own special kind of hell.

[Anonymous]

Anonymous wrote:How do I do it? Meds. Meds for me. Meds for the kids. Sadly for all of us, I wasn't open to meds for any of us until HS. I wish I had done it earlier.

ADHD is highly genetic. Meaning, "if a child has it, there is a 50% likelihood that one of his or her parents does as well."

https://www.additudemag.com/is-adhd-hereditary-blog/amp/

I also was emotionally exhausted. A big part of ADHD is feeling feelings deeply and quickly and thus having difficulty regulating emotions. ADHD also has an impulsivity that means as a parent you can react quickly emotionally. Add to that rumination and rejection sensitivity - the teenage years were as terrible for me as for my ADHD kid because - guess what - I have ADHD too.

Meds - specifically Atomoxetine for me - really helped me become more even keeled - quicker to be able to settle after stormy seas.
Many people with ADHD benefit from both a stimulant drug and something to help with emotions or mood (zoloft or other antidepressant)

Also, please look into taking NAMI Basics class (which covers anxiety and ADHD among other mental illnesses but not ASD because ASD is considered a developmental difference) with your husband. Or look into NAMI support groups.

Shifting my parenting style from authoritarian to authoritative helped, along with an Adlerian style parenting class.

Changing my parenting goals also helped - their mental health and development on their timeline in their way are important - not keeping up with the neighbors' kids.

Is the 3 year old eligible for any kind of Child Find services or public school early development? It helps when kids are at school and you get part of the day in peace, although school eventually becomes it's own special kind of hell.

I pretty much agree with all of this. And investigate all other resources. Call your local autism society and ask them about things like Medicaid waivers, etc. Even if the waitlist is a decade, get your 3 year old on any waitlists.

Meds, meds, meds — we waited until age 5 for sleep meds, huge mistake. We waited until probably age 7 for behavioral meds, big mistake. And your kids don’t necessarily need meds forever. But try some stuff and see if you can get 12 months of a more peaceful existence before you try cutting back on the meds.

After 14 years, my kid is finally sleeping through the night taking 5 different sleep meds. But starting meds at age 5 meant she slept 3-6 hours rather than 2-3 hours it was hugely helpful. Now, after 6 months of sleeping through the night, we have gotten rid of one medication. In another three months, we will try reducing one of the 4 meds she know takes. We will take quite a while to “move down” the meds and see what happens.

[Anonymous]

I'm sorry. It's really hard. really really hard.
Meds have helped for us (kids AND me). DBT has helped for me to regulate emotions; and honestly, separating the kids as much as possible helped us, too. We hardly do anything all together. It's much easier to deal with my kids one on one than together.

[Anonymous]

It sucks and it’s hard and it’s endless. My kids are 13 and 16 now and honestly it’s so much easier. I thought I would never survive this long when my kids were little but I did.

Support groups help. NAMI was really helpful. Dan Shapiro’s Parent Child Journey was helpful- and the nice thing is that it’s pay what you can if the cost of all of this is too much.

You didn’t mention if you work outside the home, but if you do take a vacation day once a year, send the kids to school/daycare like usual, and take a break. If your husband can take the day too, a day to reconnect is hugely helpful.

If you don’t try to find some time for yourself- even if it’s just 1/2 hour to cry in your bedroom while the kids watch tv.

It also took me a really long time to figure out that everything didn’t need to be addressed all at once. I always felt pressured by the messages about early intervention. But sometimes it’s best to pick one or two goals to work on at a time.

[Anonymous]

A big +1 to 06:11 and 11:06. My kids are young adults now and while I'm still providing more support than a parent of typical kids, it's not anywhere near the same intensity or volume that I did when they were young. So, have hope. I gently suggest you consider medication for yourself. I didn't consider it for a very long time because I'm the 'typical' one in our family. I'm the opposite of ADHD, don't suffer from depression/anxiety, am incredibly resilient, organized, proactive, yada yada yada. Yet, I suffered from the same beat down you described in your OP. In fact, I very well could have written your post it's SO much like my own experiences.

My OB/GYN was actually the one to prescribe an SSRI. It was during a routine visit and I mentioned that I thought I was entering perimenopause. I described my symptoms and my homelife. She so very kindly suggested that while perimenopause may be a factor, I was carrying a burden that was too heavy and doing it for too long. She suggested an SSRI would take part of the load by reducing the amount of energy I was expending on emotional regulation and would help in those times I was particularly overwhelmed with my situation. She was right.

I was on it for about 2 years. My situation got better and I titrated off it. That was about 15 years ago and I haven't needed it since but would NEVER hesitate again to take it. You might consider it. Hugs.

[Anonymous]

OP I too just want to send a big hug. This sounds very hard and you sound like a wonderful parent.

[Anonymous]

I have one child that is neurotypical and one with major physical disabilities. I have been on Lexapro for a few months. 10mg. I don't think it's doing anything. I am exhausted but I don't think I'm depressed. I'm going to wean off. Are you exhausted or depressed?

[Anonymous]

I have two with the same diagnoses and 21 months apart, and we had all of the issues you described except for the stool holding and the sleep issues (which I realize are huge). Also no family nearby, I have also always worked full time.

I don’t have great advice. The years from 2 to maybe the oldest one being 13 were the hardest but got increasingly easier. We used a lot of TV, medication, therapies, special babysitters, and separated them as much as possible. I don’t have any good advice, you’re doing everything you can, and it’s just HARD. It is not nearly as hard now, and they have come a long way. That may not be helpful when you’re on the thick of it, but extending my empathy.

[Anonymous]

The struggle is real!

Raising orchid kids was a helpful parenting class, you could try?

Be kind to yourself.

[Anonymous]

Anonymous wrote:It sucks and it’s hard and it’s endless. My kids are 13 and 16 now and honestly it’s so much easier. I thought I would never survive this long when my kids were little but I did.

Support groups help. NAMI was really helpful. Dan Shapiro’s Parent Child Journey was helpful- and the nice thing is that it’s pay what you can if the cost of all of this is too much.

You didn’t mention if you work outside the home, but if you do take a vacation day once a year, send the kids to school/daycare like usual, and take a break. If your husband can take the day too, a day to reconnect is hugely helpful.

If you don’t try to find some time for yourself- even if it’s just 1/2 hour to cry in your bedroom while the kids watch tv.

It also took me a really long time to figure out that everything didn’t need to be addressed all at once. I always felt pressured by the messages about early intervention. But sometimes it’s best to pick one or two goals to work on at a time.

The bolded. It's nearly impossible to address too many treatment goals at a time. Talk to your providers about 1 - I mean a single - thing that makes your days the hardest. Then work on that one thing. Maybe 1 thing per kid at a time. It's too hard to do more than that treatment wise. It's OK to say that you're not addressing ______ until ______ has gotten easier. This is as much for you as it is your kids - its really hard for kids to succeed when there are too many things changing at once.

[Anonymous]

Drugs for me and the kids as pp said. At the very least get the kids some clonidine to sleep through the night. That alone is huge and will pay back in spades.