I feel like I can't bear this

nomadica · October 2013

I haven't been on this board in a while. I've been kind of sticking my head in the sand re: DS's autism in some ways, I guess. I just haven't wanted to face it.

DS used to present largely with the absence of some typical behaviors, but until recently, did not display any obviously atypical behaviors. Well, they're here now. Major visual stimming, severe tantrums, significant rigidity that interferes with our daily lives.... We used to be able to delude ourselves that DS had really very mild autism, and that he'd probably just grow up to be "quirky" but totally functional. That delusion has basically been shattered as I have realized that my son's autism really isn't that mild. I honestly feel as devastated now as I did when he was originally diagnosed.

None of this is helped by the fact that I work full time at a very demanding job, and spend most evenings and weekends alone with my son and these difficult behaviors (my husband works evenings and weekends, and changing that is not an option). Oh, and I might be losing that job due to cutbacks, which will leave us without health insurance. Managing this stress, our insane schedules, the crushing debt we live under.... I just can't do it. I feel like every minute of the day must be spent rushing to take care of DS, work, tringy to get laundry done and the house to a basic level of decency, etc etc. I'm failing at every part of my life. We do not have local family and friends for help. There is so little in my life that feels enjoyable these days.

I'm really just venting here; I know there are no easy answers. I will be getting back on an antidepressant, which helped with my initial bout of depression after the original diagnosis. I'm also looking for a local parent support group, but I'm not sure that will even be possible with our schedules, but I will try. I just really don't feel up for all the challenges ahead.

MirandaHobbes · October 2013

Hugs your way... I've been there so many times I've lost count. My son is on the higher end of the spectrum now, although now that he's in mainstream kindy it is plain to see how he's nowhere near typical..

I feel so bad that you feel like things are falling apart. It probably doesn't help but- please don't worry about the laundry! We do laundry once a week- or should I say, my husband does it while he's watching football. I basically clean once a week- on the weekends, when DS is having some downtime. I have a demanding job as well, but I am lucky that my DH works bankers hours. Hugs to you for being the sole provider nights and weekends- I'd go nuts. I know Auntie has mentioned this before- but some moms (myself included) have found solace during these difficult times with exercise. I ran my first marathon about 8 months after DS was diagnosed. It literally changed the way I feel, look, and think about things. Running gave me a lot of time to work some things out in my head.

We've had times when DS is just not enjoyable at all- it happens. I don't know how old your DS is, but for us- DS got a lot easier to deal with as he turned 5. We went camping, go to movies, and even took a trip to Cali. He still acts much younger (maturity of a 3 year old), but things- life- is doable again. We started attending church regularly, go to the YMCA for our exercise (and to play together in the pool), and in general try to squeeze the most our of our limited time with each other. I hope you can get to that point. I hope your job situation works itself out and you get some help for yourself, whatever that may be.

oandmplus1 · October 2013

I just wanted to tell you that you aren't alone. I go through the same thing a lot of days. My DH also works nights and we both work very demanding careers. We also got pregnant with DS right before we got DDs diagnosis. We never imagined how crazy life would be. My house is far from clean, but I do a little here and there. I pretty much only make 15 minute meals during the week. I just have to keep telling myself things will get easier when DS isn't an infant and is a little more independent, but for now I just have to make peace with my new reality.
I guess I don't have a lot of advice, I just wanted you to know I understand and the people on this board are always here to listen.

nomadica · October 2013

Thank you all SO much. It's funny that it really does help to know that you aren't alone.

I do exercise- it's the one thing really that I do for myself. Of course, I've been sick and haven't been to the gym in 2 weeks, which I'm sure isn't helping my state of mind.

Part of why I feel so despondent is that I feel like this will never get better entirely. That at every stage along the way, I'll see the differences between my son and his peers, and it will always keep hurting. I feel like I could bear it if I just had to adjust to this reality, and then move on. But it doesn't seem like it actually works that way.

Auntie- do you really think there is a chance for my son to be successful? I know he has good prognostic indicators (e.g. is verbal, at least average intelligence, etc), but I don't know what that actually means for his life. To have a good job, get married, live independently. I just don't now if that is possible and it is breaking my heart. Not that I care if he lives with me forever- but I feel like he'll know enough to know what he's missing, and be angry and sad. THAT is my biggest fear.

Micelle78 · October 2013

Please know that you are not alone or wrong for any of those feelings. I was just telling my mom that it feels like I am in a marathon. At first it was like, damn, this is a long way to run. Then its like... I can do this... I am doing this...look at me DO THIS.

Then I hit a point where I felt like "is there a finish line? Will I be running forever? IS THERE A FINISH LINE??"

When the future is uncertain and you just feel like you can break at any moment, the journey looks so daunting. Don't get me wrong, i am doing EVERYTHING humanly possible for DS and will do it day after day if that's what he needs. Its just some days I JUST WANT TO KNOW that a normal day is in the future. Hopefully there is a day that we will reach even semi-normal. Not being able to see that goal or know it is there is so incredibly hard. I think Auntie said it best when she was relating accepting a diagnosis to many little papercuts....that really hit me personally. Everytime something new happens--behaviors, diagnosis, someone says something stupid to me etc.--- the wound gets opened again just a little bit more.

Be easy on yourself-- I know that's easier said than done ((HUGS))

Assembly_Reqd · October 2013

Hugs. I can totally relate. The never ending life cycle of Hope is not that fun of a ride. I somehow always find a way to resurrect the bitch. I just need to learn to enjoy her when she is around.

lite-bright · October 2013

Big hugs. I know you've struggled with this a lot since the dx.

I think one of the things that helps me is just to focus on the now. If I start worrying about how DD1 is going to be in 10 or 15 or 20 years, all I have to go on are the negative statistics about employment, worrying that she'll end up in an abusive relationship because she's more vulnerable than others, that more mental illness might crop up, etc. I don't know how things are going to be, I don't know how SHE is going to be. And it does me zero good to brood on it because it just saps my energy and makes me upset and anxious. Easier said than done, I know, but a stretch on a/ds did help me get out of that negative pattern and now it's easier not to fall back into it.

I can see how she is NOW. I can help her improve the things she needs to work on *now*. The progress might be slow sometimes, but it's there. And I look back to where she was as a three-YO and just dx'd, and where we are now, things really do improve over time and that gives me hope to focus on rather than fear.

nomadica · October 2013

Thanks so much to all for your support- it really does help. I know I got to a place of reasonable acceptance after the initial diagnosis, so I assume I'll get there again. It's just so hard to know that I'll need to cycle through this at least somewhat, forever. Because sometimes those papercuts feel more like stab wounds!

jsugrin · October 2013

I'm not on this board a lot so forgive me for looking like an outsider but I wanted to address your can he really be successful comment/question. The son of one of my mom's former co-workers has Aspergers and is the same age as I (40 this year), we went all through school together. Obviously this was long before there were the therapy options, the focus on social integration ect, all he had were his parents and the teachers in our really small town to guide him.

He went away to college right after high school, almost immediately got a job working in the technical field ( I believe programming but I'm not positive), he has been head over heels in love and living with the same man (yes I said man) for the past 10 or so years and they own a home. I know that there is no crystal ball to tell provide you your sons future but this was a kid that was fairly affected by his DX (I remember lots of stimming, difficult to talk to him-he'd have full conversations with himself but it was tough to get him to respond to you in a direct fashion, more like he talked in a circle, integrating you into his conversation with himself-if that makes sense, eye contact was obviously painful for him, something I could tell as a high school student with very minimal knowledge of ASD, and while he's slightly better as an adult he'll pretty much give you quick eye contact upon hello and goodbye but not during any conversation). And with all of those challenges he's still be able to be emotionally successful, financially successful, I guess pretty much tics every box of "typically" defined success *Stable relationship, home owner, long term employment, makes an enviable living*

Rachel Sonnier · October 2013

-auntie- said:
[quote]Auntie- do you really think there is a chance for my son to be successful? I know he has good prognostic indicators (e.g. is verbal, at least average intelligence, etc), but I don't know what that actually means for his life. To have a good job, get married, live independently. I just don't now if that is possible and it is breaking my heart. Not that I care if he lives with me forever- but I feel like he'll know enough to know what he's missing, and be angry and sad. THAT is my biggest fear.[/quote]

I think there's a good chance for your son to enjoy a successful and independent life- but it may not be your definition of success and it may not happen on the timetable you would expect. I won't sugarcoat- only about 15% of the highest functioning adults with ASD have full time employment, but there are very likely adults who flew below the radar as kids who are not counted in that number. My own cousin got his dx at 40- after DS did. My cousin Bob was so very like DS that he read up on Aspergers and sought a professional eval. He is a respected systems engineer and married. LOL, out of my first cousins, he is the only one of us still married to his original spouse.

I don't see DS dating at this moment in time. He definitely likes girls, but realizes he doesn't have the desire to tend a relationship as he knows dating requires. Among the adults with ASD I know, they seem to be more asexual and just not interested. They don't perceive their lack of pairing up as a loss even if their moms do. He knows what his friends have, he's not interested enough to do the heavy lifting to make it happen. I'm in a particularly bittersweet spot as my friends' kids are marrying and having families now and being a grandmother just isn't in the cards for me.

Those who do establish romantic relationships often do so on the later side. Often with others who are similar to them. My cousin's wife seems to be a fellow traveler- she's kind of annoying and gauche to the rest of the family.

This is 100% my brother and his wife. They did not find each other late (in college) but they are both very successful as adults. My brother is an engineer. His wife taught and gave music lessons before staying home with their child, and now runs a fairly successful children's clothing making business via Etsy...but they are both QUITE similar.

I still run interference for my brother in social settings and on Facebook (which he uses to frequently and inadvertently alienate people...he has some kind of political rant going right now), but it was very difficult to get used to his wife's frankness and rigidness, for lack of better words. I don't know what we expected, but many in the family initially found her very off-putting.

I however, have grown to love her dearly...on her own terms, of course. She is as brilliant as he is, and extremely talented in just about everything she does. Together they make it work and have a beautiful daughter and home. They have an extremely rigid and schedule driven home life, but it's what is most comfortable for them, and like I said, they make it work. Birds of a feather, and whatnot.

I don't know if there is a guaranteed way to know what your child's future will look like, but there is hope for a good and seemingly typical adult life, and that he will be successful, independent and find someone to share his life with. ((Big hugs.))

Ashmichelle215 · October 2013

I'm sorry your struggling with your DS diagnosis. I am a mother of twin boys who are 5 both diagnosed with autism at 2 years old. I was DEVISTATED to say the least. I have been in and out of depression and anxiety since, but I promise you things get better over time. My boys are both non-verbal but progressing daily. It's scary! I don't think parents of atypical children really understand the stress us parents with special needs kids do! I am a single mother on top of it, which makes life a hell of a lot harder. I find it difficult to find a person to vent to or find someone to talk to about all the struggles. Every single day autism affects my life, but I pray that one day the Hurt won't be so bad. My kids are extremely happy every day, they laugh and play and enjoy life and school. I don't want them to see my struggle
Or know my amount of hurt so I have to keep myself composed. I really hope that you can find some peace within the autism diagnosis and be able to sleep a little better knowing that you aren't alone.

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