All I Can Handle

August 7, 2012 at 9:17 pm | Posted in Kids | 18 Comments
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When I found out my son, Brady, has Asperger’s Syndrome, it knocked the wind right out of me. We had been working with a “Generalized Anxiety” diagnosis for some time, and I knew he had some sensory and social issues, but I was still unprepared to hear the words “These test results strongly point to Asperger’s.”

Finding out that life is going to be harder for your child is devastating. I know we are not talking about cancer or another life-threatening illness, but we are talking about a life-long condition that can be debilitating. My husband and I were (and still are) prepared to give our kids every advantage we could afford them in life, but a condition like Asperger’s Syndrome means a few giant steps backward to just getting the everyday stuff under control.

I know this might ruffle some feathers, but I just need to indulge myself and vent a little: It really annoys the hell out of me when I read posts and blogs from mothers who swear they are totally fine with their kids’ autism. They claim their child is a treasure and they wouldn’t have it any other way. I’m sure their children are wonderful and sweet and funny and endearing, but the disorder that is autism certainly is not. Do they mean to tell me that they jumped for joy when they found out their kid was going to struggle way more than the average child with normal, everyday events, such as saying ‘hi’ to a little boy on the playground or going to the supermarket?

That they thought, “Oh, delightful!” when it occurred to them that their child would likely be ostracized by other kids and would find it nearly impossible to read the expressions on their teachers’ faces?  Is it perfectly all right with them when the following scenario takes place?:

“Brady, we’re going to a birthday party tomorrow!”

You should see the panic on his face.

“NO, Mommy!! I don’t want to go! I’ll stay with Daddy! Or Miss Sheyla! (trusted babysitter) I don’t want to go to the party!”

“But Brady, it’s your friend, Jimmy, from school. He invited you!”

“I don’t want to GO, Mom! It won’t be fun. I’ll run away from the car when we get there!”

He runs for his blanket and scrunches it up over his face and neck.

“It won’t be scary, honey. You’ll have a good time with the kids and party games. There will be a bounce house!”

“But there will be other kids there! And they’ll sing stupid Happy Birthday TOO LOUD!!”

Fetal position on the couch.

“Oh, sweetie, can’t we just go, and if you’re not having fun then we’ll leave?”

“No, Mom, NO! I don’t want to go!”

Is this what we had in mind when we were carrying that luscious little bundle in our bellies? That we would be forcing them to go to amusement parks and dreading family dinners out and agonizing over the days’ schedule because a single bump in the road sends them reeling?

I love my son with all my heart, and I understand that he is who he is, flaws and all, but I really can’t “embrace” his autism. It’s not the road I had planned. It’s not the journey I wanted him or I to make. It’s certainly not going to be easy.

We’re lucky enough to live in a state that offers many services to children with these types of disabilities. And through research and referrals, we’ve found a number of wonderful private practitioners as well. Brady receives occupational therapy, social (play) therapy, physical therapy, behavioral therapy (sessions that I am involved in and learning from as well), homeopathic remedies, naturopathic remedies, and osteopathic treatments. If it seems like a ridiculous amount of intervention, it probably is, but we want to give him every opportunity to thrive.

Some days he does so well his behavior is nearly that of a “typical” child. Other days, it’s obvious that he is struggling, fraught with anxiety and over-stimulation, and it’s so hard on all of us. I often lie in bed at night and worry about him – whether or not he’ll make friends in first grade, how he’ll ever manage to ride the school bus, if he’ll be able to form a long-term relationship or get married someday. And I’d like to be like those other mothers who seem just fine with it all. Perhaps they didn’t have super-high hopes for their kids or aren’t crazy Type-A over-achievers like me. Or maybe they’re just calmer and more accepting than I am. Having a kid with autism teaches you a lot about autism, but it also teaches you so much about yourself and what you can handle.

I hope I can handle it.

xo

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  1. Hi Michelle, I feel the way you feel. Even though I had a hunch it was Aspergers it still hurt to hear those words. It is terrifying and it is a challenge. I think that all your interventions will help in the long run. If you don’t mind me asking, how did you get physical and developmental therapy? Also, where do you go for your homeopathic remedies? I am interested in alternative forms since the “traditional” route isn’t really working. Not to be insulting but if you don’t mind me asking do you pay for devices out of pocket? Thanks for your honesty. It’s quite refreshing!

    • Sabrina, thank you so much. I did promise to tell the good and the bad in my blog, but the good is so much easier to talk about! Brady gets physical and behavioral therapy as private services. Our insurance covers some of it, when the coverage runs out we have to pay for it. And I feel the homeopath has done wonders for Brady. I met her through a woman with a severly autistic, non-verbal son who began speaking and was mainstreamed in school, etc. after seeing the homeopath! I’ll message you on FaceBook with the providers’ information. Love to you and your family!

  2. Michelle – I can only imagine how much you and Matt struggle day to day. Be assured that you are doing the right thing for Brady and we know in our hearts that Brady will find his place in the world as he matures. Just keep on what your doing for him and take time to relax. We’re always there for you. Love you lots!

  3. Your honesty and struggle with the joys and pains of being a mom brings tears to my eyes. Being a mom is often bittersweet. When we are expecting those little angels we anticipate only the sweet. God brought you and Brady together for a resson. You have things to teach each other and experiences to share. Some wonderful some gut wrenching. You have all that you need to bring you through and what you’re lacking Brady has. I know you are strong smart and determined. I also know you are vulnerable, sometimes overwhelmed and sometimes afraid. Many of us moms have been there too and understand. Try to remember the good days and weather the bad. In the end he’s yours, you love him and it will be worth it.
    XO

    • He IS my amazing little man, after all. And he certainly does have a lot to teach me. Now about those days of “weathering”… 😉

  4. Aw, honey! What a beautiful and brave post! I know it takes all kinds of courage to write honestly about this subject, and open yourself up. But I also know its good for you to get it out and see all the support and love that’s out there for you. I also think it helps to know that you’re not alone and there are so many other parents who feel the same as you ( though I guess not many dare to be as honest and open as you) I know that you will be helping them with posts like this…which in the end helps you too! Know that I am there for you in any and every way I can be…always! Xoxo

    • Ok then, I’ll be dropping the kids off for the weekend. See you Friday at 7:00 😉 Really, though, thank you, and thanks for calling it ‘brave’. I was afraid I might get some negative feedback but so far it has all been positive. I’m so lucky to have so many wonderful friends and family to support me. xoxoxo

  5. I read your blog quickly this morning now just read it more thoroughly. I admire you for being honest and hope it makes other parents be honest as well. I know I have struggled tremendously with the bond I have with my daughter who has bipolar. I may not be a good one for you to talk to as I don’t handle it well. Was just wondering how do you start a blog…would love to do the same, share my experiences wtih other parents of chldren will mental illness.
    Yvette

    • Yvette, I have seen you with your children and you are wonderful with them. It is clear that they adore you! You are doing a wonderful job and you should NOT beat yourself up. It is so much more work to have a child with challenges! I know you are a wonderful mother to your daughter, don’t sell yourself short. xoxo

      As for starting a blog, simply go to the homepage of this site: WordPress.com and it will walk you through the steps of setting up your page. Then you just start writing! Good luck!!

  6. I don’t know you or your son so I am just guessing, but reading the birthday scene triggered the following thoughts:

    It sounds like your son tries to avoid exposure to a situation he doesn’t feel he can handle; that he thinks will push him out of his balance and cause social and sensory overload; maybe even cause him to have a meltdown and behave badly/ embarrassing. It sounds like he feels there are too many kids and it is too social and silly and too noisy: ‘they’ll sing stupid Happy Birthday TOO LOUD!!’

    The point of an ’embracing’ attitude to diagnosis could be to accept the kid as he is, with the limitations and strengths he has. To stop trying to force him into a template for the imaginary normal child he was supposed to be. You may feel that he should go to birthday parties/dinner parties/outings because that is what kids his age *do* and he needs to learn it, or/and people/the family expects it and will otherwise be disappointed/judge him … From his perspective going may cause torturous overload during and/or after the event. Being forced to be there may set him up to fail socially and psychologically in relation to those people/kids and himself.

    An ’embracing’ way could be help him deal with the disappointed expectations people may have when he can’t do things normally expected in his age. Like explain to Jimmy/Jimmy’s mom why he can’t come to the birthday rather than push him to go because it is expected. That is not to celebrate a disability, just to acknowledge it.

    • Hi Anna – Thank you so much for reading my blog and for your insightful comments. It certainly is difficult to live in another’s skin, so to speak, and I know that many things do bother my son that don’t bother most people. There are many things we avoid doing or don’t ask of him because we know it is just too much for him. But we do want him to practice handling life situations such as parties and get-togethers, because on some level he will have to deal with these things in his life. Generally, our policy is to try something and offer him an “out” so that he can leave or in some other way protect himself from overload. The good news is that although he is hesitant about going to parties, etc., he does tend to have a good time once we get there! He excuses himself from the room (with my help and encouragement) when the kids sing “Happy Birthday” or play a loud game, he avoids most video games and movies, and he generally plays by himself in social situations, but he always seems to enjoy himself and doesn’t ask to go home. Once I see him hitting ‘overload’ I get him out of there. That way, we’ve shown up, practiced our coping skills, had some fun, then left when we needed to, even if it was earlier than everyone else. Please keep reading and commenting – it is so good to get everyone’s feedback!
      -Michelle

      • Thank you for your welcoming attitude:-) I wasn’t sure if it was appropriate to butt in with my comment on this personal topic (that’s what I thought after posting it) so I am glad you liked it.
         
        It sounds like you have some good coping strategies in place for your son, and I see your point with having to learn to go to parties and dinners and balance both sides – avoid sensory overload and learn the expected life skills.
         
        Your post got me to think because I have sensory overload issues too. Being at parties, dinners, in shopping centres, food courts e.t.c. is overwhelmingly noisy and virtually always cause sensory overload. If I have to go (or really want to) then I can make it work while I’m there by wearing (unnoticeable) ear plugs, limiting the time in advance to a few hours, take breaks, have someone I know well with me. That way I can show up and maybe get something out of it – like strengthen relationships, build connections, get information, social acknowledgement, or just the achievement of getting something done.
         
        HOWEVER: the after-reaction (growing through the time I’m there, but doesn’t usuallly fully set in at a conscious level until after I come home) I wouldn’t wish on my worst enemy. Shocked, shaken, exhausted, unable to find rest anywhere, alienated, intolerant to sounds and people and trivial little frictions … This description is just an approximation of what sensory overload feels like for me … a physically and emotionally unbearable condition, extremely stressful. Of course the conclusion I draw from it is ‘I will never put myself through this again’. And it may last for days and take away focus and energy from activities that are actually important for me, so besides being straining in itself, a social event is followed by a period of wasted time.
         
        So, while I can force myself to go to a noisy social event and seem to be all right, the price is high and mostly not worth it. So I don’t do it anymore (generally).
         
        I don’t remember having ever refused going to a family dinner, birthday party or other social event as a kid, or complained about it or requested to leave. I would just withdraw, ignore people and focus on my activity at the time (like: eating), or become agitated, get into conflicts, become hysterical over little conflicts of interest. I wasn’t been able to define in which way I was uncomfortable, what I was feeling, what in the surroundings bothered me, everything was just mixed up and people’s behaviours were incomprehensible. I would sometimes suddenly blamed it all on one thing or one person, hating that thing or person fiercely and behaving really bad. My hysterical/spoiled behaviour was seen as unreasonable sudden outbursts not really connected to anything meaningful. So my overload issues were invisible to even my parents (I think), as I couldn’t define or articulate what I reacted to, and no one suspected my reactions were meaningful and related to being overwhelmed. Plus, most of the time I was just happily absorbed in whatever I was doing, so I didn’t seem to have any issues.
         
        Going to all the required family dinners and parties as a kid doesn’t mean that I learned to socialise at parties. That I didn’t know how to do that became very obvious when I became adolescent and adult. All I had practised was to withdraw at parties, and disassociate, and that doesn’t work anyway once you are an adult.
         
        I’m not saying this is the same for your son – not at all. I don’t know your son at all, and everybody are different. I’m just giving my own perspective which is somewhat relevant in that it I have personal experience with sensory overload. My perspective is just on of many and I am sure that sensory problems work different for different people who have them (and the same with coping strategies). I thought that articulating my perspective may be useful to you anyway, if you don’t have personal experience with sensory overload except through your son, who may not be able to articulate his experience (although it does seem like he is doing a good job at it, based on the quotes in your post). As I said this is my experience, but maybe there are some tiny aspects of similarity where it can be useful.

      • Some of what you have said here definitely reflects the way my son behaves at times. He has gotten better over the years as we have identified the problem and worked to help shelter him and also teach him coping skills (we have a wonderful therapist who is teaching us breathing, relaxing and mental strategies that have made a huge difference). But it is very interesting to hear that the after-effects can be as bad or worse as the actual experience. I will keep that in mind as I take him places and try to be even more sensitive to the signs of overload.

        I appreciate your point of view – keep following 🙂 !

      • I will:-) I am glad you could use my input. Thanks for your reply.

  7. WOW! Let me wipe the tears first because like you I always prayed that you, my daughter, would have a great life and never have a problem or mountain you’d have to climb. But life has a different path sometimes and I’m proud to know that you WILL! cope and do the best for Brady and your family. You and Matt are loving parents and Brady will always have that to fall back on thank heavens; and I hope you know that I love Brady unconditionally and don’t see any difference between him or any of my Grandchildren. Because honey, I look through Grandparent eyes and he’s just another gift from God and I enjoy every minute i spend with him. So remember, your Dad is here with love for you and that lil’ rascal UNCONDITIONALLY!

    Love Dad

    • Thanks so much, Dad 🙂 You certainly have always been there for me and I can’t thank you enough for it. You are right, Brady is a precious gift with his own special talents. Life might be a bit harder for him but we will all pull together to give him the love and support he needs. Wish you lived next door … :). Xoxoxo

  8. I know hun 😦 No one is ever truly “fine” with this kind of diagnosis….particularly when the child is very high functioning….I have had to battle a lot of demons for years over Charlie’s diagnosis, but I had to make a choice in order to be able to cope at one point. The tears still come now and then, but they are usually reserved for unique situations (e.g. I never heard him sing before I saw him participate in a school play this past spring). I have never been so broken hearted as I was the day that I was informed of his diagnosis. I am here if you ever need to talk to someone who truly understands what you are going through. I hate when people tell me that they are “sorry” when I tell them about Charlie’s diagnosis, so I won’t say that, but I am truly sorry for your pain 😦 Be strong! Bill Gates is highly suspect of having an ASD, so maybe there is some kind of a benefit to it….There is nothing harder to accept, but it does get easier in some ways after time passes….XO

    • Thank you, you are so sweet, and I know of all people you know how hard this can be. We are doing our very best for Brady every day and I try to take it one day at a time. Hugs and kisses to you and your beautiful babies. We need to get together soon 🙂


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