Feeling Invisible

[Teaching3bears]

I have a weird life as a mom of 3 boys, two of whom have severe special needs.  The older they get, their needs seem to increase and I find myself leaving the house less and less.  Even finding a chance to go grocery shopping has become challenging and I have to do it quickly.  I cannot take a class.  There are yoga drop-in classes and though I have said I would go I have not found an opportunity in the past year and a half.  I have so much to do in the house and it never gets done but on nice days, especially, I wish I had somewhere fun to go that was not a store.  We have a respite worker now but she isn't great (the other day when I came home I could not find one of my sons) though she is the best and only person I have found in four years.  I don't know that I really want to go anywhere because I don't know where I would go but sometimes I wish I had some kind of social group or that I was invited to parties where I could dress up (I do wish that I could travel long-term to far-off destinations but I could never leave my boys).  Last week my DH and I went on a date.  It was really me who wanted to go.  He said he thought we should clean out maggots from the compost bin instead.  I dressed nicely and I think I looked nice but I don't think he noticed.  He never uses my name anymore and calls me "you" only.  When my youngest son was about 6 he asked me what my name was other than mommy because he had never heard anyone call me anything else.  He knew DH's first name.  Anyways, it was kind of boring to go on the date and that made me sad.

We used to take the boys to community and cultural events and even travelled in years past.  Sometimes this went well and sometimes they screamed the whole time.  Now, it is harder because they are often sick in bed so we do this much less.

i have attended some of my youngest son's extra-curriculars.  The other parents are not usually very social.  Also, I have developed feelings of inadequacy around others sometimes.  At the sport activities, I feel like the other parents are all much taller and athletic than me and care about the game more.  I know how stupid this sounds.  Sometimes I have talked to other parents but sometimes things have been so scary with my other sons' health at home that I am kind of walking around in shock.

Anyways, I don't really know where I am going with this post.  I was not a homebody before this life was thrust upon me.  I used to need to get out of the house every day but I learned to live this way.  Neither do I have the kind of personality that attracts people like a magnet so I guess that does not help.  My oldest developed his problems 16 years ago so it has been a long time of being invisible.

 

[elegantlion]

((hugs)) I know what it's like to feel invisible, I'm sorry. 

[PeterPan]

I'm sorry it's this way. In some ways my ds' workers are the adults I talk with the most. Or I go to the Y to talk and ostensibly, supposedly exercise. 

Do you have someone you can talk with by phone? I'm very extrovert, and almost all my friends are introverts. They like to talk on the phone and sometimes just hang. Like I'll just put on the phone while I'm cleaning or making dinner or something and we'll gab. Doesn't cost anything because minutes are free. 

Yeah, the dh thing is tricky. The male is dealing with his own feelings about the disabilities (life didn't turn out like he thought), his own disappointments (again, life didn't turn out like he thought), and just normal turning 40, turning 50 midlife stuff too. They can go in a funk. My theory on that is we have to stay strong because if we ALL tank and go down the tubes with depression where are we?

So that gets us back to finding what you can to feed yourself. I'll ask, only because I don't know. Are the boys hard to take out because of physical disabilities (bedbound, whatever) or because they maybe are challenging behavior-wise (my ds)? And are you connected with your county board of disabilities? Unfortunately, even with funding, it can be really hard to find respite workers. My ds has done well with ABA workers and people who take him on outings to help him have expected behaviors and be easier to take out. But if you definitely respite, sigh, that's really hard to find. Our state has a directory that you access through the county board. Also I've found people sometimes with Care.com. 

Yes, being in so much and dealing with these things is going to make you feel different from your peers when you go out. Yes, the world is kind of obsessed with visuals right now. I find the same as you, that my peers are working out more, more trim, more fit. And I'm like yeah but I taught my ds to make complete sentences. (falls flat) Like it's just not the same and we can't do it all. And a bit of a Starbucks, work out every morning, mani/pedi kinda life sounds nice, but I can't make it happen and do what I really need to do, what I'm committed to doing. I could walk, but then I have to think honestly about what that looks like for the people with SN. I think it's ok to think long-term and think what do we really need, what does this look like long-term, what is their placement, where do they go. 

Are they physically capable of leaving the house to travel with you? Is *one* of them capable? Is anything likely to change in the future (like in 1-3 years) with any of your dc' placements? 

[Pen]

I’m sorry you are feeling this way.  I wonder what you could do (or not do) to help feel better. 

[Teaching3bears]

33 minutes ago, PeterPan said:

Yeah, the dh thing is tricky. The male is dealing with his own feelings about the disabilities (life didn't turn out like he thought), his own disappointments (again, life didn't turn out like he thought), and just normal turning 40, turning 50 midlife stuff too. They can go in a funk. My theory on that is we have to stay strong because if we ALL tank and go down the tubes with depression where are we?

 

So true, unfortunately.  I have to be the strong one.

I take my youngest son, the one without special needs, out for ice cream and stuff.

My sons with special needs sometimes have dangerous behaviour in parking lots and they can steal people's food in public.  It's just too stressful and not safe to do alone.  

I am fit-looking, though becoming stiff due to genetics and lack of exercise.  I just feel short anyways and there's nothing I can do about that.  

I hardly ever have time to talk on the phone though I used to like talking on the phone a lot and DS15 cries or runs out of the room whenever I speak due to sound sensitivity.  I only have one friend anyways.  

 

[Dynamite5]

I'm so sorry you are feeling this way. It does sound very lonely without much respite in sight. 

You can't change your sons, but you can talk to your husband. You may be experiencing some of the same feelings, separately. 

[hippiemamato3]

I'm sorry. I feel you. My son's mental health is so fragile these days that I'm scared to leave him. I know I need to get out and do self care and see people, but it's all just surreal that this is my life. I'm sorry you feel this way. 

[Ottakee]

Do you have a regional school program locally?  Even if you don't send the boys there you might be able to find a good, experienced respite provider from their staff pool.  I know that many of my coworkers provide respite for students in the evening and on weekends 

Is moving an option?  I know you said that the local school wasn't good for them but where I am in West Michigan we have an excellent school for those with severe cognitive and behavioral needs.  We have over 200 students in our building.  We also go up to age 26.   Seriously, people move into this district to get into this school.

[mumto2]

I am sending hugs and prayers..........so glad you have a respite worker now.  That is a positive step.  I hope you are able to try one of the drop in yoga classes soon.

[Pen]

12 minutes ago, mumto2 said:

I am sending hugs and prayers..........so glad you have a respite worker now.  That is a positive step.  I hope you are able to try one of the drop in yoga classes soon.

 

Yes! And even if the date wasn’t as good as wished for, just getting out together seems like a positive step too!

[Teaching3bears]

The age when women change is fast approaching and I think that is scaring me. It feels like my thirties and forties went by and my teenage boys still require the care of 18-month old babies.

I had them in a private therapy program and it wasdisastrous. So expensive, they got nothing out of it and they got worse. They were constantly calling me to pick them up because they could not handle my kids. I was completely exhausted running back and forth.

There is nothing wrong with the schools in my area. Most parents are very pleased with them. For a variety of reasons, they don't meet my kids' needs. Not because they are bad. Also, the schools tend to run between 8 and 4:00. There are no schools open at 3:00 am or whenever my child happens to be awake that day/night. Because of their medical problems I cannot wake them from sleep. There are no good respite workers who will run to my house in the middle of the night if he is not sleeping. I have found that anyone who is that desperate for work is bad news. They are in a recreation program on weekends but end up not going half the time because of health issues.

I have no problem putting my other son in lots of programs. They enrich his life, give him new skills, and let him make friends. With my two who have severe special needs, I have learned that putting my needs above theirs will hurt them and make things worse for me in the long run. I know that my decisions are the right ones for my family . This does not mean that I don't feel sad sometimes.

[laundrycrisis]

I am so sorry you are in this situation.  I know how it is to feel short, unconnected and invisible.  

I wish your partner would realize you need to be seen as a person who is more than just a caretaker to your children, and that you need to be on a team of more than one.  Hugs. 

[Shellydon]

Can the boys be enrolled in one of the many special needs programs for children in public school?  Public school programs usually go to age 21. 

[Pen]

2 hours ago, Teaching3bears said:

The age when women change is fast approaching and I think that is scaring me.

 

In general I think that change of life should not be a scary thing or something to feel negative about .  And in general I think we should learn to be a society that honors older women.

In your specific circumstances,  I would be extremely scared.  

My experience with change of life is that various physical abilities and strength rapidly diminished.  It is okay if relationship with children has also changed to one of guidance for typical tweens Instead of hands-on physical care.

However, and especially if the people needing care are large and heavy, not infant sized,  like baby and toddler grandkids would be, hands-on care would become possibly (and rather probably)?) a danger to yourself and them. 

Eventually very likely A danger to yourself and to them. 

Plans for other ways to handle the situation need to be made.

You don’t need to answer here, but I think you should know: 

If you die before they do, how will they be cared for?

If you also become very physically disabled (which IME of being past change of life would be likely as muscles and bones weaken, spinal compression fractures and the like become more common, for example) how will you and they be cared for? 

What can you do to get care for them before you reach death or your own incapacity due to disability?

How is the situation affecting your youngest child? 

 

 

 

 

[Pen]

 

 

 

Quote

I know that my decisions are the right ones for my family .

 

Gently, 

I’m struck by “my” above.   (ETA: also by “know”) 

Are what you call “my decisions” joint decisions made with your husband?

 (And does he share your sense of “know”ing that they are right for your family,  including him and the 3rd son?

 

 

Quote

This does not mean that I don't feel sad sometimes.
 

 

Hugs to you long distance 

Feeling sad sometimes is completely normal. 

What comes through in many threads seems like it goes beyond a sad feeling sometimes.

btw, I’m sure you’re  not invisible!

 

 

Edited June 3, 2019 by Pen

[Farrar]

I'm so sorry you're dealing with all this.

I'm also wondering what the long term plan is for your two boys. They're both going to be legal adults really soon in the grand scheme. Are you planning to be their caregiver forever? Do you have a transition plan? What state services do they qualify for? Might there be residential programs they qualify for? I know that programs haven't worked in the past, but draining you dry is not a sustainable long term plan. 

I'm not in your shoes, so I'm sure it's easy for me to say and very hard for you to carry out, but I think you and your dh need to prioritize finding other caregivers, programs, and a long term plan for them. I think of how, when kids are little, it's often easier to do things for them than to teach them to do those things themselves. It sounds like some of those things, your kids are never going to do for themselves, so you're stuck still doing them. But just like how for all of us, there's often a period where it's harder because we're transitioning to a new way - kids doing it themselves takes longer, takes us teaching, takes us watching it done wrong or seeing things broken, etc. - I think you need to look for how to make that transition. And it will be harder than what you're doing now. It will take your efforts to look for new programs, supports, etc. And maybe watching your boys suffer through that will be extremely hard. Some people on this board even talk about moving to get access to different services and programs and that might be something you need. But the end result will be that it eventually gets easier - which is better for you, better for them.

[Farrar]

Thinking more because I didn't feel like I addressed your core problem in your post... It really sounds like you're invisible because you're helping your boys stay invisible. I don't know exactly what their issues are, but it sounds like they have issues that make them difficult to be around in public. And you've faded into the background trying to keep them out of the way of people. I guess I wonder if you need to reframe your view of yourself. Instead of being the person who helps keep them and the world apart, maybe you're being called to be their warrior - to go and crusade and make a lot of noise for them and make people uncomfortable until they - and you - get the support that you all deserve.

[prairiewindmomma]

I think a lot of us have advised looking for long-term solutions....many of us from a BTDT perspective. I know I’ve been following your threads for a few years now, and things seem to have really changed and declined...

I also am beginning to wonder if perhaps some therapy/counseling for you would be beneficial—-especially from someone who is either a SN parent themselves or who specializes in caring for SN families. Maybe a safe space to talk, some outside perspective, and someone well connected to local resources would be helpful to you.

 

[Junie]

One thing that helped me during a period of time when I felt overwhelmed (mostly from my own health issues and so.many.littles):

I would take myself out once a month.  I picked my favorite number, and that day every month was mine.  Dh knew that he would be staying home with the kids, and I would take myself out for a milkshake, or sushi, or go to the bookstore or whatever.  It was set on the schedule as an appointment not to be broken.  Sometimes it would have to be re-scheduled due to things beyond my control, but I tried not to cancel it.

It really helped to just get a few hours to myself -- and it helped throughout the month that I knew my day out was coming.   I was able to push myself to do things that I didn't want to do, didn't think that I could do, because I knew that in 10 days, 5 days, 2 days... I would get some time to myself to recharge.

Edited June 3, 2019 by Junie

[Pen]

7 minutes ago, Junie said:

One thing that helped me during a period of time when I felt overwhelmed (mostly from my own health issues and so.many.littles):

I would take myself out once a month.  I picked my favorite number, and that day every month was mine.  Dh knew that he would be staying home with the kids, and I would take myself out for a milkshake, or sushi, or go to the bookstore or whatever.  It was set on the schedule as an appointment not to be broken.  Sometimes it would have to be re-scheduled due to things beyond my control, but I tried not to cancel it.

It really helped to just get a few hours to myself -- and it helped throughout the month that I knew my day out was coming.   I was able to push myself to do things that I didn't want to do, didn't think that I could do, because I knew that in 10 days, 5 days, 2 days... I would get some time to myself to recharge.

 

I know someone who has a similar system based on 1st and 2nd Saturday each month.  

[Pen]

20 minutes ago, Farrar said:

Thinking more because I didn't feel like I addressed your core problem in your post... It really sounds like you're invisible because you're helping your boys stay invisible. I don't know exactly what their issues are, but it sounds like they have issues that make them difficult to be around in public. And you've faded into the background trying to keep them out of the way of people. I guess I wonder if you need to reframe your view of yourself. Instead of being the person who helps keep them and the world apart, maybe you're being called to be their warrior - to go and crusade and make a lot of noise for them and make people uncomfortable until they - and you - get the support that you all deserve.

 

Interesting! 

Or even if the boys can’t get out, to figure out one thing, like going to the yoga drop in once. 

Home done CBT to work on gradual exposure to such an activity? To help dispute negative thinking? 

Edited June 3, 2019 by Pen

[prairiewindmomma]

When my ^dd^ needed 24/7 care, I had three other small kids at home. Most days, while dh was at work, I had another adult in the home with me.  At night, dh and I slept in shifts so that I almost always got 5 hrs of sleep a night. I had help with meals and cleaning occasionally, and I had a date with my dh weekly. I spoke with a counselor weekly and I had good friends who asked some hard questions about my perspectives, who drug my butt to Zumba class even when I didn’t want to go, and who helped me keep tethers to real life.

I still ended up with autoimmune disease from the stress and I have back damage from a wheelchair transfer that went wonky when she lost her balance (I saved her and injured myself.) I will always have to deal with that.

I realize that you don’t have those supports right now. I am telling you it’s possible to get them. It’s a lot of work and effort and that’s hard to do when you feel like you are living minute by minute....but what you are doing is not sustainable long term and you’re already seeing the impacts to your marriage and friendships. It’s better to bring in the supports or to do a placement while you are still there to guide/support/be a part of the process.

[Pen]

 

5 minutes ago, prairiewindmomma said:

I still ended up with autoimmune disease from the stress and I have back damage from a wheelchair transfer that went wonky when she lost her balance (I saved her and injured myself.) I will always have to deal with that.

 

 

I think health and injury even with such excellent support is really important to bring out. 

Nurses as they age, and this is basically nursing, often can’t do the same lifting and other physically demanding work that they could manage when younger. 

Similarly, female landscaper friend of mine found hands on landscaping work unsustainable as she moved into her 40s. Even with excellent emotional supports, friendships, and helpful crew. 

 

 

5 minutes ago, prairiewindmomma said:

what you are doing is not sustainable long term and you’re already seeing the impacts to your marriage and friendships. It’s better to bring in the supports or to do a placement while you are still there to guide/support/be a part of the process.

 

ITA

[Innisfree]

Thinking out loud...

OP, I have no idea what sort of region you are in. But unless it's profoundly rural and isolated, there might be other moms of kids with special needs within, say, an hour's drive who might be having similar difficulties.

They may already have a support group for moms.

Or maybe you could be the nucleus of a new community.

If you could contact those moms (or dads), is there a safe place where you could meet with your kids? A park, a library with a meeting room, a community rec center with a room for parties?

Those other moms will be able to relate to your life. A bunch of us here can, at least to some degree, but we aren't as geographically available. Those moms in your area will have kids with their own issues, so they'll be able to deal with your boys grabbing food or whatever. They may have ideas which might help. They may be just as desperate as you for community and companionship.

If there's a group already, they may have care available for kids at their meetings. If not, maybe you just get together to take your kids for a walk in the park together, or have an activity they can do while you chat.

To get a group together, if none exists now, talk to school special ed teachers, put up notices in the library, at doctor's offices, on local websites, anywhere people gather or read. Set a time and place to meet, or just exchange contact information at first. Chat a bit, see what happens. You might be a resource for someone else, as well as finding companionship yourself.

[hjffkj]

Hugs.  Everything you do sounds so hard.  I don't think I can offer any advice that hasn't already been said.  

[Crimson Wife]

In my area there is a residential camp for SN individuals that also offers weekend respite programs. Even if you don't think you could send your boys to summer camp for 5-10 days, sending them for a weekend every 1-2 months would give you a much needed break.

[Innisfree]

6 hours ago, Teaching3bears said:

There is nothing wrong with the schools in my area. Most parents are very pleased with them. For a variety of reasons, they don't meet my kids' needs. Not because they are bad. Also, the schools tend to run between 8 and 4:00. There are no schools open at 3:00 am or whenever my child happens to be awake that day/night. Because of their medical problems I cannot wake them from sleep.

Teaching3bears, I wish I could come help in person. I feel like these threads keep including advice that makes you very uncomfortable or seems unworkable to you. I do think self care is essential for you, and long term planning is essential for your boys. But I worry about how hard it must be to hear these things over and over when life already seems so hard.

*But*:

Are you trying to teach your boys whenever they are awake?

I am just so worried about your health. This sort of (lack of) sleep schedule is detrimental to teens, but I find that broken sleep and insomnia just destroy me these days, and it sounds like you're not far from my age. Seriously, this alone makes everything much worse. Emotions are worse, endurance is worse, coping skills are worse.

You just desperately need more support.

Where is your husband in all this? Is there any extended family?

Huge hugs.

 

And, you've probably got this covered, but how much physical activity do your boys get? Regular exercise might help them sleep, which might help everything else.

I am picturing you as a physically small woman trying to manage two energetic, uncontrolled teen boys, and thinking you need help to get them activity. Are there special needs teams or activities near you, so other trained people are there to help them? Here we have buddy ball and therapeutic horseback riding. I know the riding program at least is fantastic. They would pull in the folks they need to help your sons.

[prairiewindmomma]

Also, has a medical doctor told you that you can't wake them from sleep?

---If so, then sleep must be so important that they should be actively helping you help them regulate their sleep cycle.  Have you been to a SN sleep disorder clinic? Have you tried a variety of behavioral and sleep meds?

If a medical doctor hasn't told you that, and you just see an increase in behaviors, have you told a qualified medical doctor how important sleep is to managing their behaviors and how dysregulated they are in their sleep?  Like, seriously, sleep HAS to be a priority. For you and them. (In dd's case, dysregulated sleep brought on more seizure activity and because she was nonverbal, fussiness.)  I'm a bit worried that you're telling this to just a regular family doctor or to a regular ped and they really don't get the scope and magnitude of what is going on----and I say this because I watch you couch your language here on posts about how "things aren't that bad"----but if things are so bad that you are up regularly in the night and you're stuck at home, they are that bad.

My point is.....the solution to their dysregulated sleep is not to withdraw them from community and to isolate and sleep deprive yourself in a 24/7 cycle of care. The solution to their dysregulated sleep should be to regulate their sleep.  Dysregulated sleep is so very, very, very common in the SN community and there are a lot of resources that you can bring to the table.

 

[klmama]

I agree that getting help with sleep seems like the most urgent priority.  ALL of you need good sleep, not just your dss!

Several have suggested a long-term plan, possibly considering the option of residential care.  I don't have personal experience with that, but I know of two families whose adult SN dc are in state-funded residential care.  Both have severe autism; one speaks about 10 words, and the other is completely non-verbal.  They tried for years to care for their dc, but for various reasons it was no longer tenable.  They were hesitant to consider residential care, which required them to give up custody to the state, but it's been a positive experience for both young adults and for the families.

In once case, the decision was made because of the young woman's frequent violent outbursts, which were often directed toward her mother, who was with her all the time. Because her violence would be a danger to others in care, the young woman was assigned to an individual housing situation with caretakers 24/7 - I believe they work 4-hour shifts.  The mom is still able to be involved in the decision-making process for her dd, as the person who knows her best, and she still visits her weekly, but the daily care is no longer her responsibility.  Their relationship has improved significantly, the young woman is generally happier, and the mom is finally taking care of herself.  Her marriage did not survive, but I'm not sure it would have even without the impact of the dd's special needs. 

Another family I know also had to give up custody to the state for their adult SN dd to have residential care.  Again, she is happy in residential care, the parents have input as part of her care team and are able to take her on excursions, but they don't have all of the responsibility and can finally focus on taking care of themselves and have started saving for retirement, which they weren't able to do while they were putting all their extra money toward her needs.  Their marriage has remained strong.  

[maize]

Teaching3bears, could you give us an idea of what a typical day is like in your household? If there is no typical, maybe a couple of sample days? It might help us brainstorm ideas.

Also, do you have any local support network at all? Are there any people you interact with regularly besides your immediate family? Are there people you used to interact with but have not been able to lately? Have you ever met with a therapist yourself for help in coping with your very difficult circumstances? Have you considered couples counseling with your husband?

[Teaching3bears]

2 hours ago, maize said:

Teaching3bears, could you give us an idea of what a typical day is like in your household? If there is no typical, maybe a couple of sample days? It might help us brainstorm ideas.

Also, do you have any local support network at all? Are there any people you interact with regularly besides your immediate family? Are there people you used to interact with but have not been able to lately? Have you ever met with a therapist yourself for help in coping with your very difficult circumstances? Have you considered couples counseling with your husband?

So many posts!  Thanks for all your ideas and concerns!  I won't have time to answer everything.  

I like the idea of describing my day!  You're right, there is no typical day.  They are all so different and this makes it really hard to plan things.  I will describe today because I remember it best:

Special needs sons actually slept through the night, but I woke up at 5 am because I wanted to see what time it was because DS12 had an activity at 6 am (this is not typical at all, it is just for a little while).  At 5:30 I got DS up and DH got up to change, give him premade light breakfast and drive him.

5:50-6:40:: DS15 woke up and went downstairs.  I got books for him to read and sat with him and I think that is when I posted on WTM.  I was in pjs and I hate sitting around in pjs but had no choice.

6:40-7:10: ate breakfast, showered and changed.

7:10-7:20: watched DS15 again and tried to tidy a bit.

7:20-7:30 asked DS12 about his morning and got him eating breakfast.  He was in a bad mood because he was all stuffed up and he did not want to go to school.  Convinced him to go and he feels better now.

8:15-8:30 gave DS15 clothes to change into, cleaned up kitchen, got a few things organized. 

8:30-9:45 homeschooled DS15 (not academic stuff: mostly art and practical things)

9:45-10:00 Snack for DS15 and myself.  

10:00 DS15 started to fall asleep so I got him to go upstairs.  DS has been napping a lot since he was in the hospital.  Yes, I have talked a lot doctor and nurse about this a lot.  I would rather he nap than have a medical emergency.  He has a bad cold right now too.  

10:00-11:00 I wanted to make quiches but I did not want to make noise and I was also feeling very tired.  I don't know if I have a cold or not.  Anyways, I read a novel instead,

11:00 DS18 and DS15 woke up.  I helped them with tooth brushing etc. and changed DS18.

Gave DS18 breakfast and DS15 snack and made lunch quickly.  Boys listened to music and read magazines.  I did not know what to make but I took leftover soup from yesterday and added a bunch of ingredients and it made a very very yummy and filling new soup.  DS15 ate it quickly but DS18 did not want to go into the kitchen for sensory reasons.  It took him about 10 minutes to go into the kitchen but he ate quickly.  

They had two big snacks over the course of the afternoon, both aimed at soothing their colds.  Usually we do a variety of things during the afternoon but today it just worked out better to read Sophie's World.  I read this to DS18 when he was six and he was really excited to read it again even though he does not usually like reading books twice.  During the course of the afternoon DS15 played with a basketball and exercise ball and DS18 walked around the house a couple of times.  DS15 had some moments of anxiety so we worked on breathing.  

4:20 DH and DS12 came home.  I gave snacks to DS12.  I spent a long time with DS12 while he pretended to be a robot.   I convinced him to do homework.  I blow-dried my hair, organized some laundry but did not do it and wrote this post.  Other DSs played with balloons and read magazines.  Cooked and ate dinner.

Nothing bad happened today.  I was worried about DS's stuffed nose but it went away.  DS18 was smiling a lot today and laughing at my jokes and I was happy about that because he wasn't last week.  He is not toilet trained but he had no accidents today so that was really good.

Honestly, writing all this down has made me feel less invisible!!!!!!  Thanks for asking!

 

 

 

 

[Innisfree]

I hope today's going well, Teaching3bears. Thinking of you.

[Pen]

Reading your day log—and thinking maybe your doing that a few times over several days would help you. 

[Pen]

Can either ds15 or Ds18 do anything to help with daily living activities? Cooking, cleaning, etc?  

I had previously thought they weren’t ambulatory, but in the description it sounds like they are. Can do stairs, and like at least Ds 15 can dress himself. 

Idea: Making simple salad perhaps, tearing and arranging leaves as an art project—take photo before it gets eaten. Or similar with pizza if they can have that.  Etc. 

Or cleaning something and making it shine as art.

For Friends I have with severely impaired dc, activities of daily living, “life skills”, have been emphasized.  Well, for all children this is critical, but for SN, even more so.  

Even if it’s at a typically 2 year old level, like wearing a sock on hand to dust, or sitting in wheelchair at a table and stirring food that needs stirring...

also, even at my family’s level of SN issues, using audiobooks to listen so mom doesn’t need to read aloud and more time and energy is then available for the daily life tasks.  Including listening while doing ____ (things that need doing). 

Sleep does seem like a major problem, even if it was a better night than usual. You seem to be a prisoner to their napping and late sleeping. 

 

How do they give feedback so that you know you know they understand what is being read? Do they write even if they cannot speak? 

How do they communicate? How do you communicate with them? 

[Pen]

I know u said they don’t have cerebral palsy, but I wonder if watching My Left Foot with them would be useful.  Even perhaps to give them the idea of trying to find what they might be able to do despite major impairments. 

 

[Pen]

21 hours ago, Teaching3bears said:

e do a variety of things during the afternoon but today it just worked out better to read Sophie's World.  I read this to DS18 when he was six and he was really excited to read it again e

 

Do you think he is or was an extremely unusually brilliant   - and also unusually emotionally mature child who understood Sophie’s World at 6?

Or maybe just liked hearing you read it? 

I’m wondering if, because he’s not verbal it can give an impression of understanding something that he really didn’t (or doesn’t) understand. 

I realize that Wwho are you? Where does the world come from? Are the sorts of questions a lot of little kids will ask—but the rest of the book, the exploration into answers, seems more suitable to teenagers. 

A friend of my son’s (who is very smart! And NT) used to read things she could decode, but did not actually understand (or understood only a tiny bit of) 

Because it made her dad proud of her and that made her happy

 

 

Quote

8:30-9:45 homeschooled DS15 (not academic stuff: mostly art and practical things)

 

Sounds good! What practical stuff? 

 

Quote

10:00-11:00 I wanted to make quiches but I did not want to make noise and I was also feeling very tired.  I don't know if I have a cold or not.  Anyways, I read a novel instead,

 

At least novel is presumably some important time for yourself you need!!!

Would a book group be a possible thing for some social time for you?

 

 

Quote

 Boys listened to music and read magazines.

 

Again, wondering if listening could be together with helping even a tiny bit in practical ways and learning more life skills?

 

 

Edited June 4, 2019 by Pen

[Teaching3bears]

Today was much like yesterday for us.  We do listen to lots of audiobooks, mostly during mealtimes or on car rides.  They do lifeskills as long as it is something that feels good to their sensory system.  They like putting things away and laundry.  

I like reading to them.  They understand everything.  They have actually had trouble with the sound of my voice for the past couple of years because they prefer deep male voices but they put up with my voice because they love reading.  Their favourite things are reading, music, eating, travel, hiking and going to cultural events and other excursions.  We try to do these as much as possible but DS18's recent behavior and both of their medical problems which have impacted their sleep have made this harder.  

Because of the sleep unpredictability and the medical problems which are unpredictable I am finding it very almost impossible to do anything scheduled and even cancel in a timely manner.  I find this hard because I am a person who likes to keep commitments and because it leads to disappointment for me and frustration on the part of others.  

[Pen]

If they love reading, and understand everything, is there any chance you could have a neurodiverse book group for teens and adults at your own home with your helper there to help manage the boys?   Or at a park if your home would not work? Maybe start with Sophie’s World? 

[Teaching3bears]

I cannot schedule anything at a set time because there have been so many medical emergencies. It would be too much stress to have to phone and cancel during an emergency, or after while they are sleeping.

Our helper is the best I could find and the only one willing to come after I contacted people people every week for 4 years (many hours of my time spent doing this). Still, she is a basket case. She didn't show up a couple of weeks ago. Later,she told me she just fell asleep. She has told me she has very bad anxiety. I don't know how she would react if something happened when she was at my house. Would I have to take care of her too?

I don't really want a bunch of neurodiverse kids at my house. They require care. I'm too tired. My kids don't particularly like neurodiverse kids, they prefer neurotypical kids.

I did think of starting a hiking group. If their medical problems got better I would. Their medical problems ...

None of this has anything to do with me feeling invisible. It's summer. I walked by a house where people were sitting relaxed having a barbecue. It would be nice to go to a real barbecue at someone's home, dress nicely, have someone come up to me and hug me and say it's nice to see me and call me by name. It's been years. I never hear my name anymore because nobody knows me enough to use it.

I'm not looking for solutions. I have such a long "to do" list and this list has become the focal point of my life after my kids. Adding to it would stress me out.

[itsheresomewhere]

I know you don’t want to hear this but you need to get help with their sleep patterns.  Long term it is not feasible for anyone and you in the house to not make any noise or phone calls.  You also need to take care of you.  Slowly, your health is being affected more than you realize. Your DH and you need to sit down and make a long term plan.  What will happen if you should become disabled?   These questions are hard to answer and part of you doesn’t want too.  I know it is as it is something we just don’t want to but you have too. 

 

[Innisfree]

36 minutes ago, Teaching3bears said:

None of this has anything to do with me feeling invisible. It's summer. I walked by a house where people were sitting relaxed having a barbecue. It would be nice to go to a real barbecue at someone's home, dress nicely, have someone come up to me and hug me and say it's nice to see me and call me by name. It's been years. I never hear my name anymore because nobody knows me enough to use it.

I hear that you are satisfied with how you're handling your boys' needs. You want to be seen and recognized and have relationships with people outside your immediate family. Is this right?

I think we're trying to help you chart a path from where you are now to a place and time where you have those relationships.

We're also simply worried about you. You sound depressed and exhausted.

We're distant, but we do see you here. You are welcome and valued here. But we'd like to help you find the local folks who can understand what you're going through and invite you to that barbeque, because that's something you (we all) genuinely need: to be seen, welcomed and appreciated.

 

 

[Teaching3bears]

Thanks for your concern. Several people have posted concerns. I can't address them all and I can't discuss everything on the forum. I think I have given the impression that I am in denial of things or not doing everything I can do or should be doing for my kids and myself but that is not the case. I have not posted much detail about most things because it would take me all day and I most of these things I have really addressed with professionals in great detail. So much so that it would take me forever to explain it all.

[Innisfree]

Understood.

Can you just clarify-- have doctors said that you must let your boys sleep whenever they can? Is that a medical prescription, or your own decision?

[Innisfree]

If doctors have told you to let them sleep, then our starting point is different than if they haven't. As others have said, sleep issues are common and there are ways to handle them.

It does sound like the sleep issues are at the root of your isolation, at least to a large degree.

[itsheresomewhere]

If the doctors have said let them sleep, you may need to explain how you can’t make any noise or phone calls when they sleep.  The doctors may not be totally listening when you tell them and fully understanding the situation. From what you have described,  they need a bit of help with it so everyone in your house can function.  

I agree with the others that is sounds like depression a bit with yourself.  Mothers with kids who have SN tend to put ourselves way in the back burner.  You can’t and need to take care of yourself.  If you can’t find a counselor in your area, perhaps consider using one on an online service.  It would be good for you and your mental/physical health.

Edited June 5, 2019 by itsheresomewhere

[Pen]

 

 

2 hours ago, Teaching3bears said:

I'm not looking for solutions.

 

I’m truly very sorry to hear that. 

 

But I wonder what you are looking for?

 

[Pen]

Gently,  and trying to give honest feedback to you: 

I also wonder if reacting in an “I’m not looking for solutions” way may be getting irl responses back that are adding to your feeling invisible.

Long distance, I’m telling myself not to get sucked into another of these threads in future. At most to just click the “sad” emoticon or write ((hugs)) — and move on. 

I wonder, for example,  if your husband could also be feeling frustrated. 

[Teaching3bears]

8 hours ago, Innisfree said:

Understood.

Can you just clarify-- have doctors said that you must let your boys sleep whenever they can? Is that a medical prescription, or your own decision?

Yes!  The neurologists, the neurology nurse, myself and my husband all think their bodies are very tired and need to sleep for medical reasons.  

[scholastica]

10 hours ago, Teaching3bears said:

I cannot schedule anything at a set time because there have been so many medical emergencies. It would be too much stress to have to phone and cancel during an emergency, or after while they are sleeping.

Our helper is the best I could find and the only one willing to come after I contacted people people every week for 4 years (many hours of my time spent doing this). Still, she is a basket case. She didn't show up a couple of weeks ago. Later,she told me she just fell asleep. She has told me she has very bad anxiety. I don't know how she would react if something happened when she was at my house. Would I have to take care of her too?

I don't really want a bunch of neurodiverse kids at my house. They require care. I'm too tired. My kids don't particularly like neurodiverse kids, they prefer neurotypical kids.

I did think of starting a hiking group. If their medical problems got better I would. Their medical problems ...

None of this has anything to do with me feeling invisible. It's summer. I walked by a house where people were sitting relaxed having a barbecue. It would be nice to go to a real barbecue at someone's home, dress nicely, have someone come up to me and hug me and say it's nice to see me and call me by name. It's been years. I never hear my name anymore because nobody knows me enough to use it.

I'm not looking for solutions. I have such a long "to do" list and this list has become the focal point of my life after my kids. Adding to it would stress me out.

Then you need to find a residential facility for these boys as the become adults or there will be no life after the kids.

[Teaching3bears]

7 hours ago, Pen said:

Gently,  and trying to give honest feedback to you: 

Thank you!  😀

I also wonder if reacting in an “I’m not looking for solutions” way may be getting irl responses back that are adding to your feeling invisible.

Maybe?  I have found that doctors, nurses, service providers, therapists have been very understanding.  They actually see my sons so they can see how the solutions are limited.  Also, these are not the people I am feeling invisible to.  It was more the world/life in general.  I think, though, that there have been times in my life where I could have been more open to suggestions and maybe it's something I need to think about.

Long distance, I’m telling myself not to get sucked into another of these threads in future. At most to just click the “sad” emoticon or write ((hugs)) — and move on. 

Pen, I have had many threads where you have replied extensively.  I have to say that I truly appreciate it.  It actually means a lot to "invisible" me!  I'm glad you get sucked into my threads!!!!! My comment about "solutions" was not aimed at you (nor anyone in particular).  Your presence on these boards, and on my threads in particular, has been a solution!!!!  I do appreciate your thoughts and ideas and they have helped.  I guess I felt overwhelmed feeling like I could not respond to all the posts.

The reason I posted?  Probably to feel less invisible, partly to vent, to hear that I am not the only one who ever felt this way.  And I found out that I am not!

I wonder, for example,  if your husband could also be feeling frustrated. 

He does!  

((Hugs)) Pen