Tuesday, March 27, 2012

Mothers' Depression when dealing with Asperger's children

I always wanted to write really positive things for this blog -- I figured that as parents of children with Asperger's syndrome, we read and experience enough of the negative that reading instead about happy experiences and good "stuff" to try would be more beneficial to any readers who might be out there.

But, as the primary caregivers (this could include stay-at-home fathers as well), mothers by and large experience some real heavy-duty depression when dealing with their children on the spectrum. Don't get me wrong -- there are days when the sun shines, and your kid seems more social, and you truly LOVE watching their amazing ability to do math/music/write/sing/or just look at any subject in a truly different and incredible way. Most of the time, I'm on the positive upswing.

Then there are the other days. Usually the depressive episodes don't last too horribly long. Many times, they are not directly related to my son, but rather how others "perceive" my son. Tack onto that, my PERCEPTIONS of how others "perceive" my son (and yes, I do take things incredibly personally) and you have a real recipe for a full-blown depression.

It seems as if, about every six months, something "hits" me and I feel as if I'm receiving my son's diagnosis all over again, as if it's the first time. Most days, I think he's doing really well, and I don't worry too much. But once every six months, something occurs where I really feel that nothing is ever going to change, that it will never get any better. I realize that there is no comparison between my son and my other two children. For example, a milestone for a teenager and his parents is when they turn 16. We had small "sweet 16" parties for my other two children -- nothing big or fancy, just a get together with a very few friends their age. I think my depression this time is preparing for this milestone for my last child, and realizing there will be no get-together for him. My daughter advised against it -- she recommended that I not "push it" for him, that I not make him do anything he would be uncomfortable with. She is right. It would be uncomfortable for him -- and it would be more for ME, not for him.

I've already come to grips with the fact that he won't be dating anytime soon, that he won't go to a prom, that he won't be on any sports team, and that he won't be inviting a bunch of friends over every weekend. I'm ok with all that. What I would literally KILL for, though, is just to have any friend over. To hear the phone ring for him, to be invited to somebody's house. Just once. Or, if that cannot happen right away, to hang onto the hope that he can get into a college where there are other nerdy aspie kids, or just plain nerdy kids, and that they can all hang out together and play video games and eat pizza. I would be so happy if that could happen.

But, every six months, I start to believe that WON'T happen. I get in a funk, and I don't know how to get out. I get mad at my husband -- who is a great father -- because he doesn't have to experience this. He gets to go to work, he gets to interact with smart, interesting people. My social life diminishes, and sometimes it's a direct result of my son's lack of social skills, because there are few people who "get" him, and can tolerate his differences. I used to be EXTREMELY social, and now -- I don't even want to be around people anymore.

I searched the internet to see if anybody else is feeling this way. There doesn't seem to be a lot of research or information on the subject of mothers and their depression when dealing with kids on the spectrum. [There probably is, but I think I was too depressed to stick with my search for very long. Actually, I just checked, and there's tons of info.] I did, however, find one letter that touched me, in that it was identical to what I was going through. The mother had just lost her parents (as I have, a year or so ago) and they were the ones who truly understood and loved her son. Without them, she felt lost. And as her son was reaching adulthood, she was realizing that things were not going to improve. That is how I have been feeling.

The thing is, there ARE improvements. It's just that we can't see them so much, because we are too close, and in my case I compare way too much to the kids that we see at church or at school. What's truly going on is that I'm NOT seeing the other nerdy kids at school, who have asperger's or not, who are having just as rough a time socially as my son is. I'm only seeing my little microcosm of a world, and currently I'm only seeing it in a bad light. Also, when I'm going through these depressions, I tend to discount the improvements that have happened over the years. Something that also feeds this depression is the incredible knowledge that I have it EASY, that there's another adult in the house who can take over [how do single mothers/fathers do this???] The knowledge that a child who has low-functioning autism is a lot more exhausting physically. The knowledge that there are others out there who are going through a hell of a lot more than I am... then I get depressed that I'm stupid enough to think that I have problems.

So -- the reason for this post today: If you're feeling depressed, and feeling like things are never going to get better, I hear you. You're not crazy, you're tired. You feel defeated. You can't see the forest for the trees. In our situation, that's probably NORMAL. There are a ton of us out there who are feeling exactly like you, and it would be awesome if we could only find each other, so that when one of us is down, the others could rally around in support. Also, if my son ever reads this, and I hope he doesn't -- none of this is YOUR FAULT. You are the best thing in the world. This is MY PROBLEM, and I need to figure it out.

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29 Comments:

At 4:34 PM, Blogger dawn said...

I needed to be heard tonight, and I needed to hear you :) Thanks for your blog post--my "asperger mothers depression" search found it easily! Just been one of those weeks with my 8-year-old Aspie, ya know? Yeah. I think you do know :) Anyway, thanks!

 
At 7:59 AM, Blogger freeyourmind said...

I completely relate to what you are saying.. I have felt this way for a long time. I have an 11 year old son with Aspergers and I have good days and bad days.. I used to be a very happy outgoing person but my moods are now in sync with his moods-- simulataneously trying to emotionally support him. I think he is a better person than I am. I am the one with the problem.

 
At 2:53 PM, Blogger naomilm said...

I really, really needed to find and read your blog today. Thank you for this, I do not feel so isolated. I'm in the beginning stages, waiting for the final diagnosis. But all signs and symptoms point to Asperger's. I am a single mama who just started homeschooling since her new school was overwhelming for my daughter and was not supportive of her needs. I am also currently unemployed and am applying for a B.A. in Special Education, hopefully I can do that and homeschool until I find a school that is a good fit for my daughter. My marriage and divorce left me depressed. Now my daughter's behavior for the past year has taken its toll. We are living with my mom for the time being and she is at her wits end since my daughter has started hitting her when play is not done the way she wants. Okay, thanks for letting me vent!

 
At 6:34 PM, Blogger dawn said...

Hang in there naomilm. Some days are hard--some stages are hard! But some are beautiful too. May you have some beautiful days soon! I look back at what I wrote in my last comment...and I remember that week, but this week, THIS week has been wonderful.

 
At 5:08 AM, Blogger Kris said...

I am just now reading your responses to this particular post. Very few people do comment on my posts, so it is really great to read what you women had to say! I can feel how tired you guys are, and I know that it's incredibly frustrating at times. I'm glad that we all could talk a little about the subject of depression, and maybe we could continue to talk more in the future! We need each other, because we are the only people who truly "get" what raising a child on the spectrum is like...

 
At 1:32 PM, Blogger nouna mahgoub said...

I feel the same .. some days i think about giving up and some days i say to myself tomorrow is another day .. my aspie son is 15 years old and school times is very problematic .. i feel for you

 
At 12:17 PM, Blogger Kris said...

I think it's interesting that there is so much information out there about younger kids on the spectrum, but we all could use information about high school aged children and/or college aged young adults.

School is very problematic. We struggle with that this year. Last year, the meds were working, and for the first time ever, we didn't have to be the hovering parents. This year,... back to struggling. But it's getting a little better.

Is the beginning of the year always hard for your children?

 
At 8:09 AM, Blogger Colette Sutter said...

I just found your blog and have literally been reading for hours, neglecting much needed sleep but apparently your words were even more needed!

I struggle with labeling my feelings and actions as those of depression. I do spend a good deal of time crying, angry,tired of trying, angry at educators who don't have a clue, angry at my family for not getting to know my son, angry and hurt.

Jeffrey is 11.5 Diagnosed at 7 with ADD Inattentive and Doctor wanted to pursue PDD Nos. He is on the cusp of being diagnosed with Asperger's. Been going through Cognative testing at school which Was somewhat forced to avoid a legal battle but along the way I have become very close with the schools Principal and Intervension team. Sorry drifting off task.

I have nobody who understands at my level although I am considering a CHADD meeting, thinking the differences aren't too great to make a real difference...I think.

I need help with this. I've reached out to his Psychologist but don't really feel the support at the root. Textbook replies don't help me.

Most times I am his biggest supporter/advocater, but at home its a different story. I'm so alone and lost and at a loss. We lost my partner/husband/best friend and best step daddy to sudden heart failure last year and my son and I though in therapy continue on this steady decline. I see no light at the end of our tunnel.

Sometimes I do, when I put myself out there to support others, but behind my front door, I fall apart.

 
At 7:43 PM, Blogger Kris said...

Oh, Collette. I have read your comments, and I wish that I could be there to give you a huge hug. You are getting your son help that he needs, and that's hard and brave and exhausting. I really do understand your feeling of wanting your family to understand your son. To be dealing with this after losing your partner is especially hard. Somehow, when you have a spare moment (yeah, right) you need to find a support group for you so that you are not so alone. There are other parents out there that you could lean on a little in structured meetings. If I can help, let me know.

 
At 7:46 PM, Blogger Kris said...

Collette: here's a link to a support group in Cleveland. I hope there's a chance that you might find some help here.
http://www.friendscleveland.com/templates/youth/article_cdo/aid/1336393/jewish/Greater-Cleveland-Asperger-Support.htm

 
At 11:56 PM, Blogger roanna said...

i feel like slowly dying. i just got diagnosis my son has Aspergers. i can't sleep ,all i do is read about Aspergers . It felt like the future has become uncertain and bleak for my son. It seems as my dreams for my son to be a dentist ,who will have a family, who drive, who will have friends and a wife is not even going to be realized.these are just basics of life's joys that he may not be able to experience....he is missing out a lot not feeling what others are feeling...i felt like a failure as a mother.i blame myself for not doing the best i can when i was pregnant with him. they say it does not result into what you did while you're pregnant but for me, not taking folic and other vit has resulted in him getting this.this is a life sentence for my son and for me as well...
he is intelligent but forgetful, very artistic but disorganized. he is very sensitive.he can write and read. he's only 6 years old. he annoys my husband a lot when he starts parroting and lecturing about trivial stuff.it scares me thinking there will be bullies in school that's gonna pick up on his ways and crucify him.i just dont know what to do....i dont want to tell his teacher and the school about his case for they will tell others and just treat my son like an outcast. no friends, no invitations ..nothing... i dont want this to happen to him.. all i do now is keep reading how to help him develop his skills...but it also take so much of my energy and just the joy that i once have , it just lost it's fire inside...i hide my tears all the time.my husband dont even know what im going thru as he wouldnt admit our son has got any trouble...i wish he doesnt have to go to school anymore...but learning that special ed schools just doesnt give enough exposure to kids and that they get left behind of academics plus him might mimic the more troubled ones there....confuses me more...i wish this is only a bad nightmare that i can wake up to and it goes away....

 
At 2:43 AM, Blogger dawn said...

Rosanna, I know this moment is really hard right now, but please don't let that sudden heaviness of the word "Asperger's" become the blanket that smothers you and your dreams for your son.

Those dreams have not all just suddenly disappeared--trust me on this one. Yes, he has and will have challenges, but his future is NOT set in stone. "He's only 6 years old." Hold onto that, and don't let the language of autism distance yourself from your son who is the same child he was BEFORE that language entered your vocabulary. Use the language to understand challenges, to address them, to get the extra help he needs in school and at home because he needs that from you, needs you to be his advocate, but please don't just hide yourselves away.

My son has Asperger's too, and he does have friends and many people who love him, both peers and adults. He loves theater and art, thinks kids who are only interested in video games are "boring," and understands this his brain works a little differently. In an introductory video we put together for his second grade class, he called having Asperger's "a good thing" and said it just means he has "special features." Your son has special features too--good ones as well as challenges. What are they? Find them with him and help him build on them.

Yes, there will be challenges, and right now you're grieving a certain kind of loss. But make connections with other moms, READ helpful books (Ten Things Every Child With Autism Wishes You Knew, Tony Attwood's books, John Elder Robison...and steer clear of the junk that places the blame on the mother or vaccines or whatever). Get connected with Thinking Person's Guide to Autism on Facebook and online, listen to and talk with adults on the autism spectrum (there are some pretty amazing people out there!), and be as patient with your husband as you can be--chances are he's scared for his son too.

For what it's worth, I've found Asperger's to ultimately be less a life sentence (and, again, I do know that feeling), and more a key to understanding, door openings, and deep human connections, both with my son and others. Hang in there!

 
At 1:10 PM, Blogger Jacqui'n'Jason Baumgarten said...

Thank you, just read your blog and can totally relate! It's comforting to know I'm not alone,

 
At 1:29 PM, Blogger abner fernandez said...

Love it!
To the point, articulate and very interesting,
Thanks

 
At 4:27 AM, Blogger donzay mic said...

Thank you for sharing it… Best of luck for further endeavor too.Nice post !

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At 10:57 AM, Blogger Helen m said...

Hello my son was officially diagnose today,is is a relieve to know that what he has been going throw and putting me throw has a name...just hope to find all the support that he needs to help him and support him,although it will be a little difficult now with the new changes in the dsm

 
At 4:25 PM, Blogger karensomethingorother said...

wow. This made me cry like crazy. I'm so glad I found your post after googling. It is just what I needed to find. Thank you.

 
At 9:35 AM, Blogger blessedwithfour said...

Thank you for being so honest about your feelings, I so needed to hear that I am not the only one that feels this way as a mom right now. My Asperger's son is 13 and in a behavioral peak right now. During the last two years we have experienced an absolute increase in every negative behavior all at once, mostly due to hormonal changes. Lately it has seemed that every 3 months or so his behavior spikes even worse than it already is on a regular basis. He is out of control with impulses-he sneaks food, steals from family members and torments his three younger siblings so badly that I have to have him sit in the front of my van and at times even sleep downstairs in our living room so he will not bother them. I am at an absolute low in my depression/state of mind as a mother right now. I feel completely isolated and hopeless that anything will get better or ever change. We have exhausted local doctors, therapists and he was at the point that the public school could handle him so he is enrolled in an Autism school now. The bad thing with that is he has worsened behavior even more because he feeds off of the behaviors of lower functioning Autistic students. It is so bad in my household that I myself as his parent have had to be put on anxiety meds just to face the day. By the second hour of the day I am physically/mentally drained and I just feel my blood pressure rising from the chaos, stress, you name it. I feel like a complete failure to not only my Autistic son, but every family member. He really requires my complete attention and yet I just can't give it to him. He requires constant monitoring worse than my 18mo. old and 3 year old combined. I never know what he will get into next and I just can't keep up with him. I cannot even think about his future as an adult because it looks bleak and as a mom it just breaks my heart. I am no longer social with my group of friends or even most family because I am on egg-shells the entire time crossing my fingers that he will not say or do something completely inappropriate or destructive. Nobody understands him or his behaviors, no matter how hard they try to they will never understand our life and how challenging it is.

 
At 1:11 AM, Blogger Nulani said...

I got my aspie son through college with honors. It was tiring and difficult. I have an autoimmune disorder, but just kept on working and providing despite pain, lack of money, etc. I proofed his honors papers and completed forms he forgot to do. Paid the bills so he has no student loans. We had a graduation dinner in his honor. He refused to even thank me because he was angry about parking his car. The car I gave him as a graduation present. Apparently, I annoyed him when offering parking options.

I love him so much. I've given everything I have to help him be successful. But I don't know how to cope with just being irritating noise in background to him. He doesn't understand what I did to help him get a degree. He doesn't acknowledge me at all. It's breaking my heart.

 
At 4:34 PM, Blogger bev g said...

I just recently found out my 16 year old son has Aspergers. The good thing is, is that they can still be very successful in life. Also, there are a lot of many famous people who has or have had aspergers. the thing that tears me up the most is, it's only me and my son. The rest of our family is deceased. My son has no empathy or sympathy towards me, but he does towards objects or towards other people. When I had a warning stroke it didn't phase him a bit. But when he learns about certain things in his pop culture class, he gets highly enraged. Those things have already come and gone and did not directly affect us. I think to myself "but I am your mother and you can care less what happens to me." I have serious physical issue's with my spine that have left me disabled and I'm also going for a knee replacement next month. My son actually expects me to get on my knees and do yard work like a normal person. I had to explain to him once again that I can not do those types of things anymore. But still he didn't care. when I'm in the hospital for a couple days with my knee replacement it will be our first time being separated from one another ever. I wonder if that will bother him. he is my only child and because of aspergers he lost his only friend and the way he treats me absolutely kills me. i honestly don't think he loves me.

 
At 6:33 PM, Blogger Lynne S said...

My oldest son, 7yrs old, has Asperger's and I think that my middle son, 5yrs old, may be on the spectrum too. Most days we all do well. My oldest is starting to tolerate touch more and stim less. He does get stressed about things at times and he regresses.

My 5 yr old....he baffles me. He's extremely loving and active. We know that he has SPD, like his big brother. He's extremely loud and laughs at inappropriate things. And if someone is hurt or distressed he pretends that person doesn't exist. He also ignores any question or situation that confuses or upsets him. His behavior is getting worse.

I am proud of my boys. They are smart and loving. But they don't know how to relate to anyone around them. It broke my heart earlier today when my oldest told me that he just didn't know how to make friends and that he wasn't good at it. Seeing them struggle hurts.

Something that has helped me lately is to blog about some of our craziness. (www.ohmyinsanity.blogspot.com)

 
At 9:28 AM, Blogger Pete & Hazel Morgan said...

Thanks for your blog i feel less alone. We're on our third assessment for a diagnosis of ASD/aspergers and my son is now 6. My moods follow my son's too. The days when he hits me or his brother or when he screams alot and continually refuses to do stuff i start to feel depressed and worn out. His school have been wonderful giving him an unofficial 1:1 before even getting his statement sorted. They are helpful and this cheers me up as he does well and they have put great strategies in place which are effective. I have had to coordinate support myself as i have difficulties keeping him safe with another 4 year old to look after and it makes me down when activities for my other child get spoilt by his behaviour.I have also lost both my parents and have no other help available so i demanded social services help me and my MP.I feel there is always someone to battle with, my son, my local authority and health services who are supposed to have the skills to diagnose why my child needs a 1:1 at school.

 
At 2:17 PM, Blogger heather Davis said...

Hi I feel so sad for my 11year old son who has aspergers but I also feel sad for my 15year old daughter who can't cope with him and tonight I found her crying in her room because she had had enough of his anger and strops, and on top if all that I feel sad for me ,because I can't make any of it better. Tonight my son asked me to make him better because he can't make friends.

I hate my life I love my children but I can't make it better

 
At 10:36 PM, Blogger Aspiemom said...

Thank you. I am in such dispair right now. I hardly see my 14 year old son. He retreats to his computer room the entire day. He finally came to me late tonight wanting to watch tv. I thought everything was fine but he left the room and went back to his room. Never said a word. I have been crying so hard for the last hour. I don't know how to keep doing this.

 
At 9:05 PM, Blogger Unknown said...

Wow did I need to read this. My son is 18 and just graduated. He has lost all of his friends over the ladt 4 years and it had been very psinful for all of us. Thank you for feeling that I am not alone.

 
At 9:05 PM, Blogger Unknown said...

Wow did I need to read this. My son is 18 and just graduated. He has lost all of his friends over the ladt 4 years and it had been very psinful for all of us. Thank you for feeling that I am not alone.

 
At 12:33 PM, Blogger Ra Vibez said...

Thanks for sharing as I continued reading your blog, I could totally relate my son turns 16yo next month and I too suffer from depression and other health issues. I am a solo parent and am so blessed with the gift of my miracle baby boy. I am also very lucky to have the support from my friends and family for my son is truly amazing. For all parents who are experiencing similar challenges, I pray that you will be gentle with yourself and the path ahead is filled with love, laughter, joy and many many precious moments of achieved milestones.. Love & Light X

RA

 
At 10:41 AM, Blogger Deborah said...

My daughter is 23 years old and an only child. High functioning Asperger's runs through my ex-husbands family like the plague. I called it the inability to see people or a zero empathy condition before it got its name. My ex-husband does not have it. I never imagined that what was wrong with his mother was hereditary. My daughter is exactly like his mother. I realized it when she was very young. It is extremely depressing. My daughter has an IQ of 145 with Aspergers. She aced the PSAT, ACT, SAT and GRE. She started reading and writing the summer she turned two. She has no disabilities other than "mindblindness" and basically no empathy. She is very beautiful and appears more as a sociopath but she is not. She graduated from an elite college and I managed to network her into a great job. Her job requires heavy technical skills and few people skills and she works hard. I know this sounds like a success but it isn't. The biggest problem is that they can never really love anyone in the way normal people need to be loved. It is depressing and a heartbreak that never ends.

 
At 1:35 AM, Blogger Graeme Redman said...

I read these posts and weep inside, Our son is 18yrs old and was diagnosed with Asperger's at the age of around 7yrs. Since then we have struggled at every turn in his life, even basic hygiene is a real issue. Schooling was also a real problem, but we were lucky to get him transferred to a secondary school which was geared up on these kids with these problems. He just got through his year 12 and was given an assessment (some kind of certificate without doing an exam). His Meltdowns are unbearable and have had to repair many holes and doors in our house many times, his language to myself and my wife at times is utter gutter talk F#### U and alike.
The internet is his only outlet which he plays all too much, he tells me he will make money out of uploading the recordings and will make a living out of it. We have sort help from when he was young and he has had some problems which needed the Police to attend at home and at school, he had a girlfriend for around 2 years who also had some learning difficulties. He accused us of steeling his money at one stage (money was filtered to him as he could not control his spending) this was not true it was money we saved for him over many years from birthday presents and Christmas gifts. He has now spent it all all 8 thousand dollars AU in 2 years.
We were lucky to get him into a Government funded program called Nova Employment, which tries to help them with job applications and some work experience.
This is now becoming hard to get him to attend, he finds it boring.
Last year he got his girlfriend pregnant and she and her mother organized an abortion. Her father has been in prison a number of times and is now out but still selling drugs from there housing commission house.
Ok I think this is enough information except to say it is all becoming too much to cope with, I pray one day for a solution to this hell.
Graeme

 

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