I’ve been wanting/trying to write this post for awhile now but just couldn’t do it. Or didn’t want to. Could be part of denial and just not wanting to face what is right in front of me…but there it is.
Autism.
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Everyday.
I like to think that we can live our life like most normal families. Do things that other families do.
But I really think I’m fooling myself. And it breaks my heart.
It breaks my heart because I know that at one point we were that family. Living with autism, but it wasn’t what defined us or him. He was pretty indistinguishable from his peers when he was younger – which makes sense as his developmental gap wasn’t as big back then.
The things he did at 3 or 4 years of age were far more acceptable then in contrast to when he does them now at 8 years of age.
We can’t go to Cam’s hockey games as a family because he runs away. He never used to do that.
We can’t take him shopping because he runs to the toy section and melts down if he doesn’t get something. I can’t say yes all the time. He never used to do that.
We can’t walk to school because he refuses walk.
Somedays it feels like every single interaction with Cuyler is a conflict. Those days I want to quit and sometimes I wonder if I already did.
I remember an occupational therapist came into his kindergarten classroom for an observation about 3 years ago. She couldn’t pick him out and had to be told who he was. I loved hearing things like that and I heard them often. How well he blended in and was a part of the class.
Now he’s the kid skipping back and forth, flapping his hands and stimming vocally. Looking totally the part of the autistic child. I watched him do it yesterday at school and it made my heart hurt.
I see the pages that come home in his link book letting parents know what units are coming up and what the class is working on next and there it is – right in my face all the things that he is NOT doing. His IEP just gets more and more added to it each year.
I was so optimistic that he would be ok. Not “normal”, but I definitely would not have predicted we would be dealing with the all of the behaviours and issues we are dealing with currently. He was doing so great. And everybody told us. We would hear “Oh I wouldn’t even have known if you hadn’t told me”
Nobody says that anymore.
I can’t help but think that I’ve let so much time pass to resolve a lot of it that he will never be independent. Never have real friends. Never be able to regulate his emotions. Four years ago I didn’t question that any of that would happen.
We used to tell people that his biggest deficit was the social deficit. He loved being with other kids, but just didn’t know how to relate to them. Now I think he could care less about being around anyone. He’s content to sit on the iPad, laptop or his portable dvd player and watch videos. We now have to hide away all the electronics until after he goes to bed and trying to engage him during those hours is exhausting. He just resists and runs away or shouts at us to “Go away!”
He makes his therapy almost impossible to implement because he resists or outright refuses.
Now his deficits are sensory, behaviour, social and cognitive.
I haven’t even touched on his diet/nutrition. That is a huge source of stress for me.
Also – having family members tell you that a lot of the issues could be curbed if we just said “no” more often and that a lot of it is parenting/discipline – or lack thereof is insulting and offensive. They have old school mentality and don’t understand that his BRAIN doesn’t work the same and he cannot process or respond the way we would like him to.
Just more shit to deal with on top of the shit that we deal with on a hourly/daily/weekly basis while trying to live our life with autism.
I don’t know that Sean feels the same sense of…dread(?)…that I often feel (about the future). I think he gets so much fulfillment as a parent being so involved in Cam’s hockey that he feels less of an urgency to get on track, recommit and try to get Cuyler on a better path.
It’s so hard having 2 other kids that also need 100% of us. I just can’t find the balance that I need to do it and am at a loss at even where to begin.
I try my best to be positive and project that but I am human and can’t always do it.
I feel overwhelmed. I am disappointed. I am terrified.
There. I said it.
Hi,
Gosh I know what you mean Christine. I have followed your blog since I too became an Autism blogger 4 or 5 years ago. My little boy is 9 years old now. I remember Cuyler was just a little guy when we became readers.
I ve noticed too that people are noticing a huge difference in my sons behavior as hes older it stands out like a sore thumb. He’s still playing with Bob The Builder and and Pooh Bear. His older brother gets made fun of al the time because his little brother is Autistic. Ive been keeping him inside the house because kids are cruel. My Autistic boy is strong. It scares me at how strong he’s become. Hes a big kid and already going through puberty. Changes his body are clearly not ready for. His mind is still like a toddler. I just wish people would stop frickin staring and believe it or not we even had a Walmart male employee approach us in the store and said, “hey guy your too big to be riding in that cart.” I told him his Autistic and fast, having him in the cart beats him running down the street away from me and being killed. I ve noticed my son is changing alot. His Autism just stares me in the face daily, it’s so much more obvious now that he’s older. He’s recently started screaming every 15 minutes during the day for a reason I cannot figure out.
If people would stop and think before they speak it would be a wonderful world. We have spent a bizzillion dollars (it feels like that) on therapy. My son was one of those kids that didnt make huge gains in therapy. He’s still nonverbal and pulling his hair out.
Im scared of the future. Will he get too big for me to handle?
I admire everything that you do with your children, you are an excellent Mama. Ive learned alot of the years reading your blog. What would you do now that would help in the future to try to get him to cope better? Id really love any advice you can give.
Thank you so much in advance.
You have been my mentor for years!
Thanks sister!!
Miss you guys already. Can’t wait for the summer.
Nicole, thanks so much for reading and commenting. I love connecting with other moms/dads who are on a similar path to ours. Makes the journey a little less lonely.
So glad your daughter’s doing well – I hope it continues and that we find our groove soon too!
Kath – thank you xoxo
Right backatcha Ali – you’ve “been around” since the beginning of the journey.
xox
Wow. Christine.
There are so many reasons to admire you, but one of the most important is your honesty.
You are an incredible person, and a great mother and an inspiration.
Christine,
My sister sent me a link to this article, because I have an 8 yo daughter with autism. I hear you. I don’t even want to think very far into the future – this week is enough. We’ve had big ups and down and right now, we happen to be at a tentatively good time. And I understand the lows too – crying, anger, looking at my 2 nt boys and wondering what are they going to do with my daughter once we’re gone. It’s terrifying. But just look at today, and tomorrow. Go slowly and work on one small thing at a time. What may seem trivial to everyone else may make your life alot better. And, hey, I have yet to see a whole hockey game of my son’s (unless I happen to be alone 🙂 so I understand.
Nicole
Sorry Christine, I know these days are very hard. Coming into a new year with all that renewed sense of purpose stuff makes these days even more challenging when the purpose is hard to get a grip on.
There really are no answers but Scott and I are hoping to spend more with you guys. THis is a dark place right now. Go slowly, sis. You are amazing, I know this for a fact – I’ve even seen a few examples over the years.
Christine – your post broke my heart. It’s ok to feel like that and express yourself. Especially to this community! My nephew has just been diagnosed with Asperger’s Syndrome (he is 14 1/2) and this at least has given my sister and her family some comfort that the issues they have been dealing with were not imaginary. They have a tough road ahead of them but now have a direction to follow. I know it’s easy for me to say, “Take some time for yourself”, but you really need to – now and then. And the best piece of advice I can give you? a) Be gentle on yourself and b) Take help when it is offered. Take care and good luck. xo
I love you.
THAT IS ALL.
Oh Christine,
This journey is hard, and I for one am glad you are getting the hard stuff out there. Yes, there are good bits, yes we love our kids to death but… it’s hard and it’s frightening and some days the only hope is bed time.
My voice is hoarse and my eyes are drained, trying to get people to understand more about autism in general and Billy specifically. Thank you for writing the stuff the things you write, and the way you write. Your words will help people. I know that’s only small comfort…
Cheers, Valerie
Nancy – stupid?? No. Just no. What you said was exactly true.
As each email notification came through with a comment, I would well up, just feeling the support from everyone. Thank you all so much.
Ginny – thank you so much for sharing your story. The very first thing that Cuyler was tested for was fragile x. I have many IRL and online friends going through what you and I are and it does help tremendously to know that I am not alone in my struggles, fears and frustrations.
Sara – this generation has the highest autism rate. Ever before seen. What will happen to our children with autism, when they are no longer children? What will the government do then? How can they possibly support the services that will be required to help these people?? That’s my fear. Not that he will be with me for the rest of my life – I gladly committed to my kids for life, but after that? I just can’t go there. It actually makes me nauseous.
all afternoon you have been on my mind. Wondering if maybe I said a stupid thing. Truth is I can’t possibly know about this. But my heart goes out. Truly.
xxxooo
You, as always, are incredible. You are strong, funny, beautiful and you’ve been dealt a shitty hand my friend. We’ve talked before and I’ve written before about how I’m just done with autism. I”m done with kids like Cuy and Scotty having to be on the sidelines. I’m done with amazing families like yours, like my sisters. like all the other people living with kids with autism having to spend their hours worrying about the future. I’m done with moms like you and my sister having to reevaluate their hopes and dreams for their kids. It breaks my heart on a daily basis – it truly does. I hate, and not comparing one hardship to another, but how parents of kids with cancer get support and parents of autistic kids get judged. Christine you’re amazing – Cuy is amazing – your family is amazing and you;ll make it work for you. I agree with Nancy – no family is normal..if that’s any consolation. Always here for you.
x
I so wish I could be the one to say “it’s going to be okay”. Well it is, it’s just not what you thought it would be and that’s okay too. We may not know the daily ins and outs of your difficulties but we can all sympathize with overwhelmed, disappointed and terrified. Lots of love and positive vibes on here from your peeps far and near. Add me to the list.
K.
My 7 year old daughter has Fragile X Syndrome. I could have written the EXACT same things about her that you have written about your son. Everything was ‘normal-ish’ when she was younger and I thought/prayed/hoped it would be OK because I was desperate to ignore that nagging feeling that something wasn’t quite right. But it all crashed down on me over a year ago when we were told she had this syndrome. I couldn’t comprehend it and spent the next few weeks after that barely living but at the same time I was relieved to finally have an answer and stop that nagging feeling and to know that maybe, just maybe, I wasn’t such a shitty mother after all.
Everyday I wonder how she will be, how she will take things. Will it be a good day or a bad day? Will there be another huge meltdown at bedtime? Will she play with any of the kids at school? Will the kids make fun of her and will she go to bed crying because she is sad that they did? The saddest part for me right now is that she recognizes that there is a gap between her and her peers. My heart is a million pieces these days since it breaks for her everyday but when we have the good days my heart is so happy. She is joyful and cute and saying hilarious grown up things that sound funny coming from a 7 yr old. I treasure the good days and pray for more.
I see my other younger daughter who excels in so many things and is already ahead of her big sister emotionally, academically and socially and I wonder how this is affecting her. I wonder if she feels she is getting ripped off. I am afraid that I am providing more opportunities for her because she can handle them better than her big sister and then beat myself up for it and think that I am a shitty mother afterall. This is not what I imagined when I thought of myself as a mother. It completely sucks and it’s exhausting.
Sometimes I wish I could just shut down or ignore it and do nothing. But we both know I can’t do that so I do my best and constantly wonder if my best will ever be good enough, I have yet to convince myself it will be.
Christine, I’ve never read your blog before but I am sharing my story with you because I find it helps me to know that other people are going through what I am going through and feeling and knowing that I am not alone is comforting. So I hope I am able to provide some sort of comfort to you in sharing this with you.
This is so powerful and I love how honest you are. It is such a struggle to go through this and you are so brave to share it with everyone. I am sending out hugs to you!
Your candid honesty is amazing and shows the strength that we both know defines you. You are an incredible mother, friend, and champion for your children and having the fortitude to share your feelings with others is a gift. I know that all the families who relate are thanking you for having the courage to share this. I thank you because your voice on this issue allows me to share your passion through the lessons you’ve taught me… the understanding I have for the mom at Target who looks at her wits end while the rest of the aisle is sucking their teeth in judgement. You said it and it resonates with many. Thank you!
Oh god, Christine. Know that we are all in your corner!
I can not stand when family or other parents think they know what is best for your child or how to “fix” them. Drives me nuts and happens all the time with my “spirited” little girl. You know Cuyler best. You know what is best for your family. They should be supporting you not adding to your stress.
I think that the best thing for all of you is to try to take one day at a time. This is very different but when my mom was dying I tried very hard not to look to the future. It was SO scary and overwhelming and out of my control. I tried to focus on today and accept it for what it was and make it the best it could be. If you could do that, even a bit, maybe it wouldn’t seem so overwhelmingly tragic?
You are an inspiration to all mothers. Truly. And your honesty is admirable. I hope the support here helps. xo
We’ve recently become close with a family whose son is 16 and autistic. Their struggle is heartbreaking, but I have watched them find true joy in the midst of what is categorically challenging.
Their son had incredible anger issues and regulating his meds is a challenge as he gets stronger. I find that they seem to measure time in very short increments so that they can find success within windows. I am honored when Alex allows me to interact with him, however those exchanges play out.
I hope that you begin to find more people who are willing to hover and participate as they are able and begin to create a new kind of normalcy for you.
I don’t think that there is a single thing you’ve said here that deserves anything less than hugs and applause.
As a relatively inexperienced Dad – I can tell you that I have the same fears that you once had – for my kids. I watch my 3-year old and his interactions with his daycare classmates, I watch him disobey us, I watch him not stay on task for more than a minute at a time, I watch him continue to refuse to use a toilet. And then I read this post, and I get a big dose of reality.
We all know you have these fears Christine. We all think about it, try and grasp it – but we can’t. Only you can. To acknowledge them is so incredibly brave and honest. Sometimes realism gets in the way of hope… try and not let it interfere too often. I’ll stop with the advice, but as always – you’ve got my support.
These moments will ultimately prevail:
http://www.urbanmoms.ca/sometimes_holland_feels_like_hell/2010/12/fotofriday—the-entertainer.html
Christine
I’ve got lots and lots and lots of experience at this — the feelings, the fears, the fights, all the many battles, including the ones with yourself.
Good news? There’s a lot you can do. There’s hope and good stuff around the corner. Honest. I’m here rooting for you.
And feel free to email.
Sincerely,
Pam
Wow. Thank you so much for sharing so openly and truly, Christine. The path you’re on is a hard one and I believe, from what I’ve read and come to know about you, that you are doing a phenomenal job of being the best mother possible for all three of your beautiful kids. It must be so disappointing and scary to see Cuyler struggle in new, more noticeable ways, especially when you were initially so optimistic, and that’s heartbreaking. Your honesty is full or power, though, and I hope you know how strong you are.
Can I just send a huge giant hug across the internet and say that you humble me? Hang in there Christine –
Brave Girl. Always.
I am so impressed with you. Most women don’t get this clever until they are well into their forties if ever. You are amazing.
The best thing about life is we can plan and forecast but we can also take one day at a time. Ask for help, continue to do your best and know that he is yours because you are the right momma for him. Every time I read your posts I think you are amazing. TRULY.
I am very scared and overwhelmed at times too Christine- even though our reasons are different. Does it help to know that there really are no “normal families” and that we are all really struggling with something. Please know I am not discounting yours. They are big.
You have a heavy load but an abundance of riches. xxoo n
Christine, I have absolutely no words that could adequately convey how your writing broke my heart this morning. Thank you for being so brave and for sharing your fears with us. I really don’t know what else to say, except that I think you are an incredible woman, an amazing mother and I’m so glad to count you as a friend.
Please let me know personally if there’s anything I can do to help, and maybe it’s a good topic for all of us if you could share what would be helpful from the rest of the community to support you, Cuyler and the rest of the family.