Let's just get through this 4 weeks of disappointment and move on with our lives.
How did it come to this? Coordinating calendars and therapy appointments. Managing meltdowns and lack of understanding. Hating myself. And my life.
I guess I just don’t understand when it happened. I am sitting here trying to remember when it got hard. Cooper was a difficult sleeper from birth but besides that he was a great baby. Loved to eat. Loved to snuggle. Loved to be moving.
Then we had the pooping issues. Then the hearing aid debacle. And I will say that whole shit show toughened me up. I learned how to trust my mommy gut with that one. I also learned about heartbreak. And that something can happen and in an instant you are changed. You will be so surprised by how a diagnosis can change you. Change the way you look at your child. It’s a lot. Trust me.
But, when did it get really hard? When did meal time get so awful? When did the whining really take full effect? When did the lack of sleep make me a crazy person? I can’t seem to place a date or time. Maybe it was when Sawyer was born. Or maybe it was when I got sucked into doing ALL of the therapy. Or maybe it was when I personally started to notice that Cooper was behind. I really don’t know. All of a sudden it just was.
And then I look at myself. At my marriage. When did I become like this? So angry. So disappointed. So emotional. When did my heart actually break? And that one is easier to answer. It happened when I learned that Cooper was different and that his future was unknown. And it especially happened when I learned that some kids don’t talk. That one killed me.
I guess I can think of the specific moments that broke me. Cooper’s haircuts were one. Doctor’s appointments were another. I can think of a few moments where teacher’s told me that he exhibited signs of autism. I remember sobbing for a full evening and begging God to make it different. And saying to my mother, “I don’t want him mom. I don’t want an autistic kid.’ And then I remember hating myself for thinking it. Because what kind of person doesn’t want their own kid?
I think I am just tired. Tired of the unknown. Tired of it being hard. Tired of hoping and praying and wishing that he will be different. So where is this coming from you ask? Yesterday I seemed so happy. I’m like a damn one-man show these days. Up and down.
Cooper had his first speech appointment this morning after having a couple months off. He was happy to be there and played with his therapist on and off. But, when he is done, he is done. He grabs his coat and swings it around and screams and goes limp and so on. I don’t FREAKING get it. Why? What is so hard about sitting and playing kid? I think about Sawyer and he would LOVE to sit their and play with this fun lady. Heck, I can think of a million kids. But not mine. And for the life of me I can’t make him want to be there.
I spoke with Jamie and told him how I was feeling and ended it with ‘Judge away. I know I am a horrible person.” He responded with, “You’re not horrible. You’re human. Let’s just get through this 4 weeks of disappointment and move on with our lives.”
When did it come to this? I am so freaking mad.
My heart is broken on your behalf. Now, granted, I’ve only read about 3 blogs, but you sound like a reasonably sane person – and what I read today sounded so very normal. I can’t imagine the stress that it would put on a person, physically and mentally, to endure what you are going through. I can’t imagine how hard it would be to have my son not be able to communicate with me on an ongoing basis. I don’t think anyone looking in will ever understand exactly how hard it is to just make it through the day some days.
So, I can say that I’m awfully proud of you! Even as my heart breaks and I can hear how tired you are, you wrote about it, you shared, and hopefully you will find the support and love you need to get you through just one more dinner, one more bedtime, just one more day. 🙂
THANK YOU lady! You are so sweet. I needed that. It’s funny. I do so good for days and then something about Coops will make me so sad. Thank God for this blog so I have people who I can share it with and understand! It’s saved me more than once.
Sending you a hug.
Please remember, you don’t have to hold this all together all on your own – lean. On your husband, on your friends, on the babysitter you hire so you can GET. OUT. You don’t have to be at 100% for 100% of the time for 100% of the people around you. You’re allowed a time-out. Or several. You’re allowed to pass the ball or even drop the ball. The ball isn’t going anywhere.
Cooper’s pretty amazing. He’s already done some big things. He’ll do more. I think he’s got a lot left in him.
Your pretty amazing, too. You’ve already done some big things. You’ll do more. I think you’ve got a lot left in you too.
Oh I can’t even tell you how sweet you are. Thank you. Hugs back to you as well. I guess I really do think deep down that Cooper’s going to do a lot more too. It’s the day to day that’s killer though. I’m just so tired. But, my husband and I have a trip planned! We leave on Friday! So that is getting me through.
Woohoo! That sounds awesome! Just the two of you?
Yup! My parent’s are coming to stay with the boys and the dogs. They are in for a ride! Jamie and I fly out on Friday and come back on Tuesday. I plan on sleeping, eating, drinking and acting grown up! I almost can’t stand it. We are actually going to the airport 2 hours early for drinks so we can start our trip earlier!! Yup, we don’t get out much.
That’s AWESOME! I’m so jealous! Enjoy!!
Of course you hate yourself, of course you didn’t want a child that was different, of course you feel robbed as hell and mad as shit to boot (forgive me, I’m from Texas).
It’s NOT fair. It does suck. And you’re allowed to hate those moms that whine that their kid “talks so much” a little.
Now scream. Go into your room and grab a pillow. Put it up to your face and scream until the tears come. Ugly cry while looking at yourself in the mirror and wonder how you got here; what you did to deserve this.
Then, pick yourself up, dust yourself off, and go kiss Coop. Because you’re all each other’s got in this journey and both of you just need to cry it out sometimes.
Hugs.
Oh my gosh I love that you said Ugly Cry! Yes, you are right. So right. Hugs to you too.
It sucks when everyone keeps telling you to look on the bright side, doesn’t it? Especially in the throes. 😉 I say get pissed. Rage on a bottle of wine. But just keep moving forward. That’s all we can do.
Amen to that.
I love this post because it is so REAL! You are most definitely not a horrible parent. The fact that you are worried about all the things you mentioned because you want to help him find his full potential proves that. I remember when my son was 3, he was not talking, he would scream for 3 hours straight on bad days, every outing was a chore and there are days where I remember sitting down and just crying because it felt like I couldn’t take it anymore. After the tears were done though it’s like a release and you get back up and move forward almost with a new momentum.
It is your right as a parent, autism or not, to feel overwhelmed because life is sometimes overwhelming and eventually, although we would like to be SUPERMOM, we sometimes need an emotional break!
Have fun on your trip!
Thanks! For the comment and the compliment and for understanding. I love it all!
I understand this ping-pong thing that happens within the grief process, and I can also relate to having a good day full of optimism then crashing into a bad one. Mainly because it’s so damn exhausting being hopeful all the time. Us Mama’s that live with broken hearts exist on a totally different level than other people. We are always on the edge of a variety of emotions, and it can tip over to be any one of them. I’m sorry that I can’t offer any advice other than saying I understand and thank you for writing such an honest post. x
Hey Rowan! So good to hear from you! I love this comment. You summed up exactly how I feel. I have noticed that I have more good days than bad now. And that is a definite improvement. It’s embarrassing to say but I used to wake up at night worried. And I wouldn’t be able to fall back to sleep. Not anymore though. Thank God!
You’re not alone. But oh man does it really suck sometimes. My son was diagnosed 2 1/2 years ago on the spectrum. I thought because he was/is high functioning, it wouldn’t be so hard. A good friend told me having an autistic child is like living in Seattle….there’s a LOT of rain, but the sun does come out sometimes, and when it does, you have to revel in it. When it’s raining, lean on your family, friends, and resources, and remember the sun will come back.
Thanks lady. I needed to hear that. Having a kiddo like Cooper is very isolating sometimes. I NEED to know that someone understands how I feel.
I am so sorry you are having a rough time right now Kate! I feel your pain more than you know. I know it’s hard but focus on what is good right now – you have gotten unbelievable support lined up and it won’t be long now!
Hey Claire. You are so right. And I really do feel it. I think this is going to be a good summer and then September will bring good things!
Thought this might be something you might need to hear http://emmashopebook.com/2014/04/03/emma-presents-at-congo-with-ari-neeman/ “Yes. Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.” Emma 13
I just want you to know that I’m so in awe of all you’re doing every day. You are SUCH an awesome mother! I also want you to know that it gets better….it really does. There are still tears, and moments where you think about “what isn’t”, but you shift to a place where you actually spend more time celebrating the “what is”. I think you may be going through the hardest part right now.
I would love to tell you to go out and try to have a day off and give yourself a break, but I also know that if that was really possible, you would have done it already. What I think you really need is someone to give you some hope to hold on to. So I’m giving you this.
When I was at your stage, I had an email exchange with a blogger who was a few years ahead of me (so to speak), and she wrote some things that stuck with me, and got me through the toughest times ( I have literally thought about what she said at least once a week since then). Anyway, she told me to be patient, and to remember that the experts are just people with degrees, but that we know our kids better than anyone. She also told me that kindergarten/grade 1 can be a huge turning point for little boys, and that her little guy didn’t really speak until then. And she told me that he was (at that point) 9 years old and getting almost all A’s on his report cards.
Well, I waited, and did the therapies, and felt the panic in the middle of the night, but I held on to hope. And now, we’re approaching the end of kindy, and my little guy has had a breakthrough of epic proportions. We went from being told that he would need to be in the intensive support program (6 kids, largely non-verbal) in grade 1 to being told that he should be mainstreamed. He is making friends, he’s learned to read, and he’s HAPPY. He’s autistic, but he’s pretty indistinguishable from his peers. That diagnosis just helps us to understand his challenges and have more insight into why he struggles, when he struggles. Anyway, I just wanted to share that…hold on to the hope, and remember there really are happy endings out there. Assume competence, and focus on heading up and to the right. As long as you’re going up and to the right, you’re on the right path ;).
Hi there. I just got back from a quick vacation and your comment has made my day! I can’t even put it into words actually. It’s comments like yours that get me through the time times. I KNOW in my heart it is going to get better. I KNOW Cooper is going to surprise us. It’s the waiting that’s hard. And the not knowing. Hugs to you and thank you for giving me hope.
It really, REALLY is going to get better. It may get worse before it gets better, but that doesn’t mean the better is still coming. Huge hugs. I’m glad you and your husband got away….it’s so important to do that when you get the chance. It makes us better parents :). Hold on to the hope tightly. Cooper has so many awesome surprises in store for you. xoxo
Tears falling after reading this post. I love and admire your “realness”. I thank you for putting yourself out there! I’m by no means an expert in all of this having just started the journey, but my fears are similar and my thoughts of “the unknown future” wreak havoc on me. We can only wait and see… Which is SO FREAKING HARD! big hug and no matter what, you get through it because we love our little men so much.
Thank you! Having a kiddo like Cooper can be so isolating. I have all these feelings and emotions and I honestly have no one to tell. My husband is great but he just can’t ‘be’ where I am.
YOU ARE AN AMAZING MUM I am walking the same road and I know the hardest thing for me when my son was diagnosed. Was not liking who I became in times of stress, meltdowns etc etc. Over time I realised it was me, not him that needed to change. Patience is my lesson to learn. One tiny win at a time. The best thing I did was to Imagine how scary life is for my son. Today he is heading for ten, less drama, less meltdowns more happiness. We are only human and our lives are doubled in stress compared to most. Hook your feet to the ground and hold on tight. Your son is going to amaze you, inspire you and teach you so many wonderful things about a different life. I hear you, I feel your frustration you are not alone. YOU ARE A GOOD MUM because you recognise the times when you feel defeated and you will keep going. N is for never give up. Blessings to you and your family.
I can completely relate. I hate who I become in those moments of stress. And it’s not like I’m not getting MORE patience and MORE understanding it just gets to be too much sometimes. Hugs to you!
May your day be a peaceful one, when people ask what do you need, most of the time all I wish for is some peace and quiet…little things matter, remember we all fall short, as long as we get back up and try again. You will see change trust me xxxx