parents who can't live independently

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momsparky
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28 Jun 2015, 10:34 am

The "other stuff" IS stuff like cleaning dishes, doing the laundry, keeping a routine, keeping a schedule of appointments and getting your kid where they need to be.

Developing a routine (rather than a schedule - so, things follow in an order rather than things happen based solely on a given time) is very important for any child's mental health: it is one of the primary tools through which babies and preschoolers learn. We also started out as "we aren't schedule kind of people" and found out very quickly that it made our son miserable...and us miserable as well. Babies and children need to sleep at regular intervals - sometimes they don't want to, and you have to help them stick to their sleep/eat routine. They don't naturally know how to keep themselves from being sleep-deprived or hungry, and if you let them provide the structure, they will make themselves and you miserable at best, and put their health at risk at worst.

You might be hypervigilant (which I was) but you will still not be able to watch your baby 100% of the time. Unless you keep the environment safe, you won't be able to stop your baby from finding dangerous stuff, and even if you could, it isn't good for the baby: we figured that out the hard way - it was either babyproof the house and keep it (relatively) clean or have my son sit in the middle of the floor sobbing because everything he tried to do he was told "no."

Unsanitary environments are one reason children are placed in foster care: maybe it will be helpful if you take a look at the issues that constitute child neglect and see if those fall outside the scope of what you are able to do. Note that regular access to healthcare, clean clothes appropriate to the weather, and an environment free of rotting food and insect infestation are examples: https://www.childwelfare.gov/pubPDFs/ne ... ew=Chapter 2 Definition and Scope of Neglect

I think no one here is trying to be harsh - we are trying to explain (from the perspective of many for whom these things were challenges as parents) that parenting is something that really requires you to push yourself to develop these skills - they are not separate from parenting skills, they are an integral part of it. You don't have to be perfect at them, but there is a minimum standard, and I'm wary of the idea that someone else will do all of these things for you without being paid to do so.

I also think you might be selling yourself a bit short: it may take you longer to develop EF skills, you may need to find unconventional ways to develop them, or they may wind up looking different from other people's ways of structuring themselves - but I believe it is possible to do it.

I think it's a better plan to work on these skills in preparation for parenthood than it is to plan on having a child before you've got them.



Adamantium
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28 Jun 2015, 12:46 pm

I find I am agreeing with pretty much all of this--I am not so sure about the schedule vs routine distinction--a schedule creates routine, I think.

Anyway, I can't do any of the things I need to do without reminders. So I use a lot of them. I have always relied on computers, PDAs or phones to tell me when things need to happen and what the agenda is.

With those resources and my wife, I am a good dad. Without that support, I would have failed because of those EF problems.

The main thing I remember about the first couple of years of parenting was the constant need to wash and sterilize bottles, keep gates separating the child safe and less child safe areas of the apartment closed, change diapers and keep the diaper bin cycling along (e.g. emptying when appropriate) and, because my son had all kinds of digestive issues, constantly going out to hunt for the very expensive formula that he needed. It always seemed to be that I would find out from my wife that we needed more of that exotic formula between 11pm and 1am so I got to know all of the 24 hour pharmacies in southern Manhattan because of that.

My situation was a little extreme because we had twins, but you never know, this is always a possibility when you set out to conceive a child.

Another issue was extreme, prolonged sleep deprivation. This actually made my sensory issues more intense and generally interfered with my cognitive abilities. I likened it to being under the influence of drugs or alcohol for almost a year... It was a grueling endurance test and I could not have done it if I hadn't worked very hard to find ways to work around my problems with schedules and organization.

In those days, I did know this had anything to do with autism, but the difficulties were plainly evident.

The reality of raising babies is that it's a huge amount of work cleaning, cooking, washing and being closely observant of the child and the environment. You have to anticipate threats and hazards and mitigate them before disaster occurs, you have to put aside your own wants and needs for the sake of tending to your baby. You have to keep them in a warm, safe, clean and pleasant environment and you have to take care of their emotional needs regardless of your own.

Not only did it take every drop of energy and attention that my wife and I had, but we had to hire someone to come in and help, and totally redo our budget to make that possible.

Single parenting is no easy undertaking, even for people with excellent executive functioning.



InThisTogether
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28 Jun 2015, 1:05 pm

Adamantium wrote:
I find I am agreeing with pretty much all of this--I am not so sure about the schedule vs routine distinction--a schedule creates routine, I think.


To me, a schedule is when a certain thing happens at a certain time. A routine means that things happen in a predictable pattern, though not necessarily at a particular time. A schedule does lead to a routine, but a routine does not necessarily lead to a schedule. I am neither a schedule nor a routine person by nature. However, I cannot function effectively without a routine. But because of my particular EF issues, maintaining a routine takes effort. My "default" is to just tend to things "whenever," but that doesn't work. At all. It creates chaos that I cannot overcome. This got much more pronounced when I had kids, because then I had to work the "Kid" routine into the "me" routine, which had to be worked into the "household" routine, which also has to be worked into the "work" routine.

And there is always some degree of "schedule" mixed into the "routine." The time the kids need to be on the bus. The time I need to leave home to get to work on time. The time I need to process payroll so my employees get paid. I use a combination of calendars, planners, alarms, sticky notes, and "habits" to get through it all (routines--like when I get up in the morning, I put a load of laundry in the washer. After my son gets on the bus, I put it in the drier. After I get home from work and have finished dinner, I fold it...there is no routine for putting it away so sometimes it stays in the basket folded until it is worn :wink: ) . If I don't stick to this one routine, within days, no one has clean clothes, and I am left with enough laundry to spend a whole day doing it.

There are certain things my husband reinforces and helps with. But for 2 years we were separated and I had to figure out a way to do it on my own without anyone else prompting me, including the big picture things like managing finances, making sure the car has gas, and all that other "stuff." I don't think I could have done it when I was 26.


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momsparky
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28 Jun 2015, 1:17 pm

InThisTogether wrote:
But for 2 years we were separated and I had to figure out a way to do it on my own without anyone else prompting me, including the big picture things like managing finances, making sure the car has gas, and all that other "stuff." I don't think I could have done it when I was 26.


This is brings up an important thing to think about: the best laid plans of being a parent with supports often go awry. You are legally responsible for the child whether or not your support network plan works out. You have to be flexible enough to find a way. My situation is in no way congruent to InThisTogether's but when my son was an infant, my husband took a job that meant he would be away for 24 and 48 hour stretches: that was REALLY hard, even though I officially still had his support. (Frankly, it still is - and my son's in high school. It's less hard, though.)

I believe that parents with disabilities not only have rights under the ADA, but also may qualify for support from their state's DHS: I would look into that - I found the following organization that might be a starting place for information: http://www.lookingglass.org/home



Cyllya1
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28 Jun 2015, 1:36 pm

OP, I can sympathize. I'm in a similar spot. I can live independantly, but just barely. I can't keep my home safe enough for a child. My plan is to get in a good enough spot financially that I can straight up hire people to do all the stuff I struggle with, but I'm not sure that will ever happen.

To make matters worse, modern culture has changed regarding supervision of children, and the rest of society hasn't really caught up, so you have a bunch of extra challenges. Nowadays each child has to have someone specifically assigned to supervise them at all times, to a much older age than in the past. You have to do it this way even if your kid doesn't need it, or else you'll have social trouble and probably even legal trouble. (Even though the law probably doesn't actually require that sort of thing.) Like, someone mentioned play dates. When I was a kid, we didn't have play dates. We just told our parents when we were going out to play and where we'd be, and there was a rule that we had to be home by a certain time and/or check in by phone. You can't do it that way anymore.

This effectively makes kids more "high maintenance" than in the past, but people act like it's always been this way, so you get no sympathy.


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WelcomeToHolland
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28 Jun 2015, 9:40 pm

I agree with most of the things that have already been written but I also wanted to add that 26 is still quite young.

I had my first child when I was 25, and while we managed alright, I have to say that it got easier when I was older and more financially secure, etc.- things that tend to come with age. If I could do it over again (and get the same kids and all that) I think I would have waited. There's no rush to have kids when you're 25/26. There definitely isn't a rush if you are not yet able to live independently. You can give yourself time to learn the essential skills required to be a parent before you become a parent.


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Adamantium
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29 Jun 2015, 9:05 am

WelcomeToHolland wrote:
I agree with most of the things that have already been written but I also wanted to add that 26 is still quite young.

I had my first child when I was 25, and while we managed alright, I have to say that it got easier when I was older and more financially secure, etc.- things that tend to come with age. If I could do it over again (and get the same kids and all that) I think I would have waited. There's no rush to have kids when you're 25/26. There definitely isn't a rush if you are not yet able to live independently. You can give yourself time to learn the essential skills required to be a parent before you become a parent.


Very true. I wanted to add support to what InThisTogether wrote about giving yourself time to develop skills. I was late to get a driver's license, late to get steady employment, and it took a while before I felt even minimally financially competent.

I just wasn't ready to have a kid in my 20s. We didn't start trying until we were in our 30s and didn't succeed until I was 37--it probably would have been easier to conceive when we were younger, but we would have made lousy parents. Some things are worth waiting for.



Ettina
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30 Jul 2015, 6:11 pm

I think a lot of you are missing the fact that I'm living at home, with parents who are willing to help me if I need it. I won't need to clean or do dishes or whatever. They are willing and able to do that. They are not willing to be full-time parents, though, nor would I want them to.



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30 Jul 2015, 8:05 pm

Maybe foster parenting would be a good fit for you until you see if you are able to do it. Parenting is a 24/7 job, and cleaning up poop off the floor or out of the bathtub comes with the territory. Would you be okay with staying up all night with a child with a fever and cleaning up vomit off of the bed during the night? I am not trying to be mean either, but parenting is tough with a partner, much less without one. What if your parents become ill themselves and aren't able to help. Taking care of a sick child when you are sick too is one of the toughest things to do.

So, while I completely understand your strong desire to be a mom, I think there may be some things to work out. I am not saying you can't do it, but you really need to think realistically about it.



momsparky
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30 Jul 2015, 8:48 pm

Ettina wrote:
I think a lot of you are missing the fact that I'm living at home, with parents who are willing to help me if I need it. I won't need to clean or do dishes or whatever. They are willing and able to do that. They are not willing to be full-time parents, though, nor would I want them to.


I think we all understood that: what we are saying is that we are concerned that those things are an integral part of parenting and will be hard to avoid even with support. At the very least, you need to be sure that you can pay someone to take over your parents' part of the job, because if something happens to them, you are in trouble.

Another issue to think about: who is going to teach your child the self-care skills you don't have? Your parents may not be able to provide the same kind of support they do now when your child is a teenager.



ASDMommyASDKid
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30 Jul 2015, 9:35 pm

Also, not to be morbid, but you would also need a plan for if anything would happen to your parents. Either if they get too aged, informed, develop Alzheimer's, need more care themselves, or an accident happens to them, or if they die.

I can tell you, that if something were to happen to us, we do not have anyone that would be competent who would be willing to take care of our kid. This is a very scary thing for me. If I had an NT kid this would not be the case---but b/c of our situation, no one competent would take our child in.

In your case, someone would have to be willing to help an entire family. If you have that covered, then that would be an item in the plus column.

The other thing is, if your parents are currently helping you with stuff like dishes and laundry, you would be adding bottles (if you use formula or pump) to the dishes, explosive poop clothes to the laundry, etc.



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31 Jul 2015, 1:04 am

The kid won't stay little forever so as they get older, they will be able to do more for themselves so therefore the OP won't need her parents around if something happened to them. It's when they are really young, you have to pretty much do everything for them like give them food, give them baths, etc.

I don't know how old the OPs parents are. Mine are in their 60's and I am done with having kids. It's not because of them, it's because I don't think I could handle more stress, I don't want to pay for a bigger car, I don't want to pay more money like for food and entertainment and presents and clothing and school and also more time for meal preparation because I would have to make an extra plate an more planning and longer to get ready and longer to get the kids up for school. I wouldn't want to use more of my time and having to do more planning or else it will be tough. I have already done a bunch of boo boos already as a parent and being poorly planned and getting stressed out. Yeah it tells me to stop having kids so I got a IUD. Yeah we would get more money from Social Security if we had another child but I just don't want more stress in my life so people having kids to get more money is really strange but I guess they can handle the stress :?


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31 Jul 2015, 2:16 am

I get what you are saying, but even if her child/children are NT and develop at a typical rate---he/she/they will not be self-sufficient, themselves for a very long time. They may have significantly less needs than a baby, but they will need care. Also, if the OP herself is not self-sufficient that means her parents will have to have a back up plan not just for her, but for her whole family. Maybe she has other family who is willing, but I would to know in advance if I were her.



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31 Jul 2015, 10:36 am

I think you are considering your parents too much of a safety net.
I think you need to develop your own independent living skills first and be able to live by yourself and take care of your basic chores like cleaning an apartment at a basic level without others reminding you or managing your tasks for you.


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momsparky
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31 Jul 2015, 1:59 pm

League_Girl wrote:
I don't think I could handle more stress, I don't want to pay for a bigger car, I don't want to pay more money like for food and entertainment and presents and clothing and school and also more time for meal preparation because I would have to make an extra plate an more planning and longer to get ready and longer to get the kids up for school. I wouldn't want to use more of my time and having to do more planning or else it will be tough. I have already done a bunch of boo boos already as a parent and being poorly planned and getting stressed out. Yeah it tells me to stop having kids so I got a IUD. Yeah we would get more money from Social Security if we had another child but I just don't want more stress in my life so people having kids to get more money is really strange but I guess they can handle the stress :?


I don't think that people really have kids to get more money - people who are against taxes like to say that, but the reality is that the poorer you are, the less support you have to access more effective birth control.

League Girl, I think this is a really good assessment of what a person on the spectrum needs to be able to handle - you are doing all of this stuff even WITH the support of your Mom, right? I always appreciate what a good and thoughtful parent you are.

I am still waiting for parenting to ease up with my son, and he's fourteen. Yes, he can dress himself...and sometimes feed himself...and sometimes get himself where he needs to be - but I still need to be MANAGING all of that, and frankly it was in some ways easier when he was a baby and I just did it all myself. Granted, neither of us is NT, but I'm not seeing it be significantly easier for my NT friends and their kids.

Ettina, I think you want to hear something other than what we're saying, but it sound like the consensus is that if you want to have a kid, you need to find ways to build up the skills you don't have. You are young, and I think you are underestimating your ability to grow and learn.

When DS wants to do something I don't think he's ready for, I outline the skills I think he needs to develop and explain that he can do it when he can demonstrate XYZ skills. There are all kinds of work-arounds, strategies and accommodations that allow him to come up with a wide range of skills. The same was true for me: I'm not good at all kinds of stuff, but I did learn how to be independent by building skills in ways that were drastically different from my NT peers.

I have a friend who is significantly disabled (not sure how, but at least part of it is a cognitive disability.) She would certainly qualify to live in an institution, but she decided she wanted to marry her husband (also disabled in a similar way) and to work. They lived together in an apartment in a minimally supportive housing building...and her apartment is SIGNIFICANTLY more tidy than mine. The only support offered to her is that there are spot checks on the apartments to make sure they are clean enough to be safe (although hers is clean enough to be beautiful.)

I always think of her when I'm struggling with EF skills: if she can find a way to do it, then so can I.



Ettina
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01 Aug 2015, 8:49 am

momsparky wrote:
Ettina, I think you want to hear something other than what we're saying, but it sound like the consensus is that if you want to have a kid, you need to find ways to build up the skills you don't have. You are young, and I think you are underestimating your ability to grow and learn.


I'm not young, I'm 26. If I wait too long, my fertility will go down, and I'll be forced to adopt when I'd rather have a biological child. I'm scared of the process adoptive parents have to go through. Just like you guys, an adoption agency might not be able to look past my disabilities to see that I have a support system in place to deal with them.

Anyway, I really wanted to hear from someone who's had a kid while not living independently, and instead I got a whole bunch of people saying it can't be done and calling me selfish for wanting a child. (Who isn't selfish in wanting a child? Only a small minority of adoptive parents, as far as I can tell.)