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An Autism Mom on the Meaning of Mother's Day

By May 3, 2011

In the second of this week's series of guest blogs by autism moms, a mother new to autism reflects on the meaning of Mother's Day.  Jessica Severson blogs about autism, parenting, budgeting, working and juggling the insanity of it all in her blog Don't Mind the Mess.

Last year was my first Mother's Day. I don't remember much of it. Our house was buzzing with activity. It was the weekend of my husband's graduation. My in-laws and my parents were in town. There was fawning over the baby. There was the successful graduate. There were 3 mothers present for Mother's Day: me, my mother and my mother-in-law.

It was a little crazy but I'm not sure I would have wanted a small, intimate Mother's Day last year. Because I wasn't feeling that great about myself as a mother. Other people cuddled and played with their babies. Mine always seemed to be screaming about something. We never had those idyllic mornings snuggling with the baby in bed. He was intense and loud and rare

ly pleased. I could not relax during a drive to the store or a walk down the street. I was exhausted and jealous that everyone around me seemed to have it so easy.

More than that, I was depressed. I felt like I was doing everything wrong. I felt like something was wrong with my baby. I felt like this thing I'd always wanted was not at all what I expected.

When you sign up to be a parent, you sign up for work, any parent will tell you it's a full-time job. But I felt like I was constantly getting killed with overtime.

It was only a few months ago that I found out that it wasn't me. My son, Graham, is autistic.

Good things have come out of that diagnosis. But it seems like every good thing has a bad thing tagging along.

Good: I am not doing anything wrong. Bad: Something actually is wrong with my baby. Good: For me, the diagnosis is a vindication and a sense of relief. Bad: It also means that none of this is a stage, that he may never "grow out of it" like I always hoped.

For a while I got some time to relax and be glad that I wasn't deluded about having a tougher time than most mothers. Now, though, Graham's treatment has started. There are goals to reach. There is work to do. There are behaviors to reward and others to ignore.

On the weekends we have to walk a fine line. Do we stick to the rules and spend our days off dealing with the inevitable meltdowns that follow? Do we give him a break only to make it harder when things start again on Monday? Lately I fold more often than I stand my ground. Until April, Graham didn't have any words, so when he says "Train" and points at the television, it's hard to say no. He is communicating. It's amazing. It's so much progress. But we still want more.

I want to help. I want to encourage him. It takes a lot of energy and it takes a lot of patience. All of these are in short supply on a weekend, especially if I'm at home by myself. Graham is figuring out how to work the system. He's already trying to get away with things when I'm around that his therapists won't tolerate.

It's a different kind of frustration. I still wish he would just calm down and be happy. But now there are things I can do to make it better so the pressure falls back on me again. Am I trying hard enough? Am I doing well enough? Just like before, I feel like the answers to these questions is usually "No." At least, that's how it feels to me.

A year later there will be nothing much going on at our house on Mother's Day. My husband will probably have to work. Graham will still be difficult. Maybe I will get a gift or a card or a night out, maybe not. The truth is, I don't know what I want this year either. I don't know if I'm comfortable being celebrated or appreciated when I still feel so bad at this motherhood thing.

As soon as you become a Special Needs parent, other people talk to you differently. They say you are amazing. They say you are the best parent for your child. I never feel like I deserve these compliments. I guess it's their way of acknowledging that I got dealt a tough hand and I should take it in the spirit that it's offered. I should be able to stand up and say that I'm trying hard and I deserve some recognition. Still, it's possible that I'll never get comfortable. I may never feel the way I thought I would.

I hate it when people sing to me on my birthday. I don't know how I'm supposed to act. I find the song rather silly. It means I have to stand there awkwardly, looking happy and modest and pleased when I'd rather just eat cake. So it's not such a surprise that I wouldn't mind if Mother's Day went by unnoticed. Well, maybe 70% of me wouldn't mind.

There is 30% that wants so desperately to get breakfast in bed and then get whisked off for a day of pampering or taken out to a candlelit dinner. But that might never happen. I don't know if I'll ever get the kind of day you see on television where the earnest child comes in with a tray of semi-edible food made just for you. I don't want the 30% to take over, to start giving me expectations that will never be met.

It is too early to tell how our son will end up. Maybe he will be indistinguishable from his peers. Maybe he will never ever fit in. In the meantime, the least I can do is sit back and not care about Mother's Day. Instead I'll just keep working on being his mother and finding my own rewards.

May 3, 2011 at 9:09 am
(1) Ilene says:

You ARE an amazing Mom. People aren’t just saying that. You recognized at such an early age that something wasn’t right and you are doing your best to address your son’s needs!!!! THAT is why you are amazing. Yes, your son is more difficult to understand than a typical child and you have to work harder than your friends with typical children. But Graham really is lucky to have you in his life. And you’re right — it’s still so early and there is no way to know where this journey ends. He may fit in perfectly, he may not, just like you said. But YOU are giving him every opportunity to succeed, and that is something you can look upon with pride.

Thank you for sharing your story!

May 3, 2011 at 2:34 pm
(2) Kellie says:

I know exactly how you feel! I never feel like I am doing enough to deserve the compliments. I know I could be trying harder. I know there are things I should be doing but I often let my tired self win over the wanna be supermom self buried deep within me.

But we do have to realize that we are doing more than most. Giving things a hundred and ten percent is easy when your child is typical. I have one with autism and one typical. It’s a constant struggle with one and ridiculously easy with the other (guess which is which). ;)

You are amazing. You are amazing for realizing your son needed help. You are amazing for not turning a blind eye to his struggles. You are amazing for getting him the help he needs. You are amazing for loving your son. You are amazing for just trying and not giving up.

Thank you so much for your story! It’s comforting to know that other moms are going through the same struggles and emotions.

May 3, 2011 at 4:19 pm
(3) Debbie says:

OK, you’re right, you aren’t perfect! Neither am I. I want to be-I’m determined, patient (well, they tell me I am), relentless, honest, persistent & I want the best for my 18 yr old son. I’ve noticed over the yrs, there is a pattern that all Moms carry within them the same recipe. DETERMINED, PATIENT, RELENTLESS, PERSISTENT, HONEST & WE ALL WANT THE BEST FOR OUR KIDS. That is part of our purpose in this life. There are times that we all need & have to howl at the moon (you think I’m just making a visual for you, I actually go outside and scream!), but the next day I feel better, more able to cope than the day before, pain is not as unbearable. Just know & keep telling yourself that the older they get, the more “down” time you will have. I promise! Of course, its still not as much as other Moms, BUT I feel like it’s WAY more than it used to be & it’s WAY more than you have right now. PS U R right in your thinking re: the discipline. DON’T EVER GIVE UP!!! The devoted discipline, consistency and staying on the same page with other caregivers WILL pay off when he’s older. YOU are the alpha & YOU deserve a life, too. He just has to realize that. You know they will test you to your limit. But, you are smarter, bigger, older & more crafty. Make beating him at “the game” a rewarded win for you. I’m not into abuse, but all I have to do now is give him the look-ha ha! It is possible & ACTUALLY works. I don’t know if you drink or knit or whatever it is you do to relieve steam, but just do it. You deserve it. Stand up for yourself. Youre worth it! You are a good human being! Find a friend/sitter to stay with him while you get a pedicure for two hours. I promise that mental/physical time away from him (I had to spend 2 days training the person) will keep you able to help your son be ALL that he can be by KEEPING MOMMY WHOLE & ABLE TO COPE with everyday life. You are worth the sitter money & effort! Much love comin your way from Texas, Debbie

May 5, 2011 at 4:17 pm
(4) Molly says:

Debbie: You are soooo right! I wish you were around when I feel overwhelmed and guilty. I am going to print out your comment and pull it out when I need it!

May 4, 2011 at 11:22 am
(5) Barbara says:

I agree witht the other comments. You are truley an amazing mom and people are not just saying it to be nice. You haven’t given up on your son and you have gotten him the help that he needs. It took me forever to get my son help and into the proper schooling. Well atleast it felt like forever. It sounds like you have an awesome head start on this and that is very important. It is a long journey but the triumphs he over comes will bring such happiness to your life. I look back at the way my son was a few years ago and i am truley amazed. (He was diagnoised just before his 3rd birthday and he is now 10) I sometimes wonder if all the work I did actually helped him as much as i hope and would he been any different if i didn’t work as hard as i did.

thanks for sharing your story!

May 5, 2011 at 2:27 pm
(6) Cortney says:

Barbara my son is also ten and I feel the exact same way.

May 9, 2011 at 7:41 am
(7) Barbara says:

Courtney the lastest accomplishment was my son with our cat. He loves the cat but was very aggressive towards it. He would squeeze the cat hard to hold it so he could pet her. I told him that scares her. Now he is able to call the cat over and pick her up slowly and pet her. The cat even comes to him on her own. This is only in the past month and I am truley glad that I didn’t give up on him like everyone esle told me to do. It is amazing that he learned a little about what makes the cat happy and NOW he is finally happy to because the cat like him. This took a few years to finally learn. Its a HUGE accomplishment.

May 5, 2011 at 4:27 pm
(8) maggie says:

I hear ya. I hear lots of comliments about how great I’m doing and know it’s my family’s way of trying to focus on the positive. There’s a lot of negative for them to ignore. It’s brutal, and relentless. The thing that has made the biggest difference for me personally (and this is completely individual, I know) is learning to meditate and to come to grips with the fact that that there is much that is out of my control. I can only do what I can do and spending all my time thinking I could or should be doing more is not helpful to my son. I love him very much and I know he knows this. The rest is one day at a time. It is also helpful for me to keep in mind that I don’t know his life’s path nor is it for me to determine. My job is to love him and do my level best every day. And on some days, my best is better than on other days. I really appreciated your post. The honesty of other people is what gets me through, not the “inspirational” posts.

May 5, 2011 at 4:34 pm
(9) Molly says:

Jessica: Hang in there! It is tough when they are that young. Until a few months ago I felt like the autism was holding me and my family hostage as my son had such a hard time with everything. We had to monitor him constantly and closely – he couldn’t be left alone for a minute. My husband and I work different shifts for childcare purposes and sometimes when I would pull into my driveway after work I would sit in the car for 5 minutes and give myself a pep talk, especially on those days when work had been hectic and I was already exhausted, never mind taking on my “night shift” job! My son is 5 now and is calming down. Things are better. I think he is a happier little boy as he gets older and feels more comfortable in the world.
And thank you for having the courage to say how hard it can be for us moms of special kids. I have found often people don’t want to hear about the challenges – I think they are not comfortable with it. It’s easier for them to just declare us “amazing” like we are super heroes and that we are so darn special that we are not in need of help or respite. I am sometimes tempted to say, “Well, as I am so amazing, reward me with one hour of babysitting!”

May 6, 2011 at 10:25 am
(10) karen says:

Jessica, thank you for your honest feelings, just stay the course and keep it simple and honest, last Sunday my 11 year old autistic son made me breakfast a cheese omlet and toast, it was awesome! All the hard work and effort in the last 10 years paid off you will get your breakfast in bed be paitent it will happen.

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