Friday, January 15, 2010

Sometimes It's Lonely

I feel like I'm alone.

I have three kids. I have a husband. I have a caring extended family. I have real life friends and I have friends who live inside my computer. But there are days when I feel like I am sinking and I am all alone.

Way back when I started to suspect that Jack, my middle child, was autistic, I had to walk that road alone. My husband was slow to come around. I had friends and teachers tell me to my face that I was wrong, and, in a couple of memorable examples, crazy for thinking that. I had friends who thought they were making me feel better by dismissing my concerns. "Jack? No, Jack couldn't possibly be autistic."

It was lonely.

Now Jack has a diagnosis and a special education team. My husband, family, and friends all agree that Jack has autism. My friends, online and off, cheer us on when something good happens, and prop us up when something bad happens. But still, sometimes I feel like I am sinking and I am all alone.

It can be lonely.

I spend so much of my life reading and learning about autism. I try to figure out what will work for Jack and what will not. I spend hours every afternoon working, cajoling, and pleading with Jack to get him to do his homework. I drive him 45 minutes each way to a half-hour therapy session each week. I research therapies and brainstorm ways of doing things. I hunt down providers and doctors whom I trust and can afford. I take the brunt of my other kids' frustrations with being witness to or passengers on this same ride. My husband, although intuitively good with all my kids, has never read a parenting book or an autism book. Sometimes I feel like I'm sinking and I am all alone.

It is lonely.

I am so grateful for my support system. I can't imagine what my life would be like without it. And even though parenting an autistic child is hard, I wouldn't change it—or him—for anything. But during the dark times when I don't know what to do and when I don't feel like anyone with the power and ability to make a positive change for Jack is willing to do so, none of it seems to matter.

That's when I feel like I am sinking and I am all alone.

Stimey blogs at Stimeyland (and is usually waaaaayyy cheerier than she is today).

18 comments:

  1. Thak you so much for writing this. All I can say is that you are NOT ALONE.
    Shivon

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  2. I know these dark and lonely times so well. I think it's probably good to just acknowledge them and that they're a part of the whole deal. Sharing them makes us all feel less lonely, too.

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  3. My boys are 10 and 8 and the elder with NLD, the younger with Autistic disorder. Once upon a time, I would have written exactly the same post. But I've since discovered that it's better if one of us deals with the day to day and the other is the support. That family support workers are easier to take to meetings than husbands. Someone has to make hard choices, and it's better that one person be in charge and allowed the freedom to do just that. That there is a world out there that has nothing to do with autism and I enjoy every moment I play in it.
    Sometimes, separation of duties wrt children and life are necessary.
    Where once I was lonely and mad... now I'm simply going with the flow.... Except when the school drives me batty :)

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  4. It helps, a little, to know I'm not the only one in this dark place. As moms, we are always told (often insincerely) that WE know our kids best, and that's a scary thing at times like this when we don't know what to do for our kids. If we don't know, what will happen to our children? Who can help them if we can't?
    No wonder we feel so alone.

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  5. oh my gosh, i am so in the boat right now. feeling the loneliness of it all. my daughter has the school meeting this wed to see if they will evaluate her for special services. i am running around getting all the reports in place, i am talking to other moms about how they went about it, i am researching the difference btw a 504 and an iep, i am talking with her preschool teacher, i attended a meeting given by a bcba. Meanwhile I feel as if hubby doesn't know what to do or think so he just focuses on his work. My friends don't know what to say or do so they tell me how the kid down the road with apsergers - has friends that don't even think something is different, my family says she will outgrow this, i am alone against the universe trying to make sure my daughter gets a fair shot at life. i am doubtful of what i am doing, i take her to OT once a week, i have a physc meeting for her next week, an eye doc appt next week. meanwhile she has at least 1 to 2 fits a day every day and i am use to it, that it seems the norm, yet when i tell some one about the fits i realize how NOT normal it is. sorry had to vent. this post hit home for me

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  6. Lots and lots of hugs to you. I, too, struggle with loneliness. I have a 13-year-old daughter with NLD/Asperger's who is homeschooled. My husband also has Asperger's. He loves my daughter, but doesn't know how to play or do anything with her but sit and share things on the computer. He focuses entirely on work as a reaction to domestic stress and deals with her problems by not dealing with them, coming home late as she is getting ready for bed. Like you, I am overwhelmed by being the sole person responsible for research, teaching, therapies, companionship, etc. for my child. It is indeed very, very lonely.
    One thing I have become convinced of is that our society is all too happy to put the weight of dealing with special needs kids on parents -- usually but by no means always the mother. We shortchange all parents with no parental leave policies or flexible workplace arrangements or social security credits for full-time childcare; we double that penalty on parents of kids with extreme or special physical, mental, or emotional needs. I find that thinking of this as a larger social problem may not give me a practical answer, but it does help me from turning it all inward and feeling it is somehow my fault for not being able to handle everything. It's all too easy otherwise to lose a sense of myself and my own needs inside a family where everyone else has Asperger's and may not always be able to see me as a separate person.
    It's not only special needs kids who are neglected or harmed by our collective cultural reluctance to provide them with what they need to thrive. It's also the parents.

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  7. I'm curious, Farmwifetwo, is the family support worker something which is provided by your health care system? (You're in Canada, right?) We don't have anything like that here in the States. You're right about bringing someone else to the meeting; though, I have to say, my husband has been fabulous and supportive at meetings.
    Stimey, we ALL go through those "dark valleys" when it feels like no one could possibly be there to help us make sense of the conflicting behaviors and countless approaches, etc, etc. I think that's only normal. But, in a more practical vein, you KNOW (at least, rationally, I have not doubt!) that you have a group of friends —both IRL and online— who would be willing to listen and support you ANY TIME. Don't believe it? I double-dog-dare you to put it out on Twitter & see how many people send you their phone numbers. I'm going to send you mine on FB. Seriously.
    Oh, and, for the record, despite how awesome our spouses may be, they ARE men and so many of them are oriented to "fixing" and "solving" that this autism can really, pardon the phrase, stimey them. I watch my own husband get utterly paralyzed sometimes with not knowing what to do. i used to get angry about it; now, I realize he's unable to see past his own block.

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  8. I am right there in the trenches with you on the partner just not 'getting it' on the same level. I think part of the loneliness I feel stems from the exhaustion of problem solving and constantly anticipating the next hurdle. By myself. I'm learning to let go of the over functioning in small areas and one bigger area of late. Nail on head.

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  9. Thank you so much for putting into words exactly how I feel.
    It seems that loneliness and autism go hand in hand.
    It is such a hard road to walk...especially if you feel like you are the only one walking it with your child.

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  10. I lost "my village" when my son's issues became apparent. He isn't even a hard kid, but we no longer 'fit in' with the others. My family, totally supportive but not HERE. And it seems like everywhere I go I feel a little bit more alone and lonely. That, plus issues with the hubby seem to be creating a bigger gap between us. So, this post is me too.
    Pia
    http://jonathansvoice.blogspot.com

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  11. I'm still fighting to convince my in-laws that Foster really does have autism, and that spanking him won't make him suddenly less autistic. They are my husband's parents - I have to tread lightly, regardless of how ignorant they are and act.
    And my husband, too, has never read ANYTHING about autism. I tried to get him to watch "Autism, the Musical" with me. He fell asleep, and when it was over and I was crying, he couldn't fathom what had upset me so.
    Yes, it can be very lonely, but rest assured, you are not alone.
    xo

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  12. There are so many nights spent searching, thinking, processing, searching some more. So many days. And then you get sent back for more. We could all write doctoral dissertations on autism and the local resources available (and not available).
    Sending you lots of hugs while you search, and process, and search some more. And let me know if I can help. :)

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  13. When I feel the most alone, I think I am being my own worst enemy. I'm here for you Stimey and you can call me anytime, although I have rather crappy phone skills. :P Lately I feel loneliest homeschooling a child who has all of it: behaviors, dysregulation, anxiety, LDs, cognitive issues, social emotional blah blah. We don't quite fit in the disability community, or the autism community, and we sure as heck don't fit in the homeschooling community. And since I am a pessimistic idealist with conservative morals but liberal politics, I don't fit in my state or anywhere else in the midwest for that matter. But I stumbled on a few people IRL and online and that click is there that keeps me going ... otherwise ... I would be in a bad bad place. Many many hugs and much love!!

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  14. Baby, you have articulated what I never have. I experienced the same story, word for word, every step of the way, right down to the "you're crazy" to the great husband who's never read a book about autism. I manage it all, the big decisions, the meetings with therapists and specialists, the homeschooling, all of it. In fact, just last night, I informed the Viking that he was going to have to initiate and make a big decision on our behalfs (behalves?), at least once. I can't always be The Decider for five people. Can I? They say that leadership is a lonely business. We should form a club. Or not.
    Yours in loneliness among the hordes-
    E
    Ange ... I'm also in your boat. Live in Texas, also as a pessimistic idealist with conservative morals and lib politics. Go figure. I'm sure that's somehow correlated with autism or mercury or something. ;-)

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  15. Baby, you have articulated what I never have. I experienced the same story, word for word, every step of the way, right down to the "you're crazy" to the great husband who's never read a book about autism. I manage it all, the big decisions, the meetings with therapists and specialists, the homeschooling, all of it. In fact, just last night, I informed the Viking that he was going to have to initiate and make a big decision on our behalfs (behalves?), at least once. I can't always be The Decider for five people. Can I? They say that leadership is a lonely business. We should form a club. Or not.
    Yours in loneliness among the hordes-
    E
    Ange ... I'm also in your boat. Live in Texas, also as a pessimistic idealist with conservative morals and lib politics. Go figure. I'm sure that's somehow correlated with autism or mercury or something. ;-)

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  16. First, a hug. Second, like you (and Emily!) I decide everything. I go to the meetings, I deal with the school, I shuttle to doctors and therapy, I sit with the homework, I facilitate book reports and school projects, help with showering and dressing when necessary, and constantly look for ways to foster independence so that I don't have to jump every time the kid needs a pencil or a snack. My husband does a lot too, just "other" stuff, stuff that involves adventures and building and exploring and keeping everyone sane. Somehow it works. But yes, sometimes it's lonely and hard and isolating in the worst way. Another hug?

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  17. Oh BOY do I sympathize with the lonely feelings!!! My son doesn't have Autism. He has a brain malformation and possibly "some kind of chromosomal or as yet un-named genetic issue". He has global developmental delays, is mostly non-verbal and has severe sensory issues. We haven't been to a restaurant as a family in I don't know HOW long because if our son sees someone 6 tables away with a plate of spaghetti, he will projectile vomit across the 6 tables. He is a wonderful, happy child with perhaps the sweetest temperament possible. A lot of friends and acquaintances have cited our 'luck' that he's so happy and sweet. Yes, we're lucky for that. We love him unconditionally and do everything we can to advocate for him. You can only run uphill for so long before you collapse. And when I collapse, I feel like I could lay there for 7 hours and the only consolation anyone could offer me is to say "At least he doesn't have meltdowns!". And that just makes me cry. I don't feel like I can complain to anyone about our difficulties, because then I seem ungrateful for all the good things about our situation. We don't fit in with the parents of kids who have Autism. We don't fit in with the parents of kids who have chromosomal or genetic issues. My husband is wonderful and supportive. My parents are wonderful and supportive, and help us as much as possible. My friends are wonderful and supportive, but they don't understand where I'm coming from.... not really. We can't go to gatherings at friends houses with other families, because my son is now old enough to be embarrassed when he vomits in front of other people, but he can't control it. If he sees a trigger in a room full of people, there's the barf. It's embarrassing for him, it's heartbreaking for me to watch him be embarrassed about something he can't help.
    It's lonely.
    We get no assistance for respite care or medical costs because we don't qualify. Social Security laughed us off. There are no 'special needs' daycares anywhere in my area. If I did find one for him that was close enough to consider, I would have to work full time, to pay for PART TIME daycare. I recently found a part time job (wonderful place!!!) to pay for the $160 a month increase in our insurance premiums. But I can't work full time because there's no daycare or after school care available for kids like my son. As it is now, we gave up all of our family free time, so that I can 'high five' my husband in the driveway at night and swap parenting duties while I'm at work. Sure, we're lucky to have good insurance and I'm thankful for that. I'm frustrated that it's family time being sacrificed to pay for health insurance. Okay, now I'm just rambling, sorry.
    I agree. It is often very lonely. (((Hugs)))

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