Tough Day, Tough Love, It’s All Tough

Something isn’t quite right with Anna. It started Tuesday night. Dominic is in the choir this year and has been practicing for a couple of months for the holiday show. Mom and I strategically planned the whole night. She brought Anna in later, right before the show started. I had seats saved near the end of a table and near the front. We sat her in between us. Anna was a little anxious, but nothing out of the ordinary. There were no babies in the crowd, no toddlers crying. She even sang along to one of the songs. The choir did such a cute job putting on Snow Biz and ended the performance with a rendition of this song…

We wish you a Merry Christmas!
We wish you a Merry Christmas!
We wish you a Merry Christmas!
And a Happy New Year!

She lost it. Anna bowed her head and because to cry. Then mom took her into her arms and she began to sob.

Austin lifestyle child family special needs photographer

We tried to discreetly remove her but people were milling around after the show. Dominic was so lovely, saying, “It’s okay, Anna, it’s okay.” She couldn’t really explain why she got so upset and she was very tearful the rest of the night. Dominic was really amazing in how he treated her and interacted with her. She was sad getting off the bus yesterday after school too. Her menstrual cycle is now regulated by her endocrinologist, so she’s only having one cycle every three months; she’s not close to that time at all. I don’t know what this is.

This morning, we were out of routine. I cannot explain how important routine is to a child with autism, and even more so to a child with an intellectual disability. I mentioned a few months ago the problem we were having with Anna crying in the morning. It caused so much anxiety and stress that we’ve been seeing a child behavioral specialist ever since. Well this morning, Dominic had a medication checkup appointment with the child psychiatrist at 9:00. Most days, Dominic has already left for school by the time Anna gets up. I thought about having him hide out in his room until she got on the bus. But no, she got up early and saw that Dominic didn’t have to go to school right away. Worse, Dominic was playing on screens, something we usually don’t allow before school. Since she was up early and had been doing so well, I allowed 15 minutes of screen time after she was totally ready for school. But… I had to get in the shower to get ready for Dominic’s appointment, so Daddy was the one to handle the transition. Curtis comes in a few minutes later and says, “She’s crying.” Yep, we had one of those mornings.

I had Curtis send the bus away and told him that I would take her to school myself. But I did not have time to do that before Dominic’s appointment with the doctor (and Curtis had to go to the Dell campus), so Anna had to come with us. As we finish up with the doc, Anna starts crying at the reception desk and pretty much cries all the way to school. She got calmed down enough to walk inside the building, and Dominic and I had her chatting and distracted when her teacher came to fetch her in the front office. When I began to leave, she broke down and clung onto me for dear life. She started yelling and sobbing. She shoved her teacher. I was worried she was going to knock over the Christmas tree. And I had to leave her like that. I had to walk away and not look back. I was worrying about what she was thinking and feeling while also feeling sad, angry, embarrassed, and guilty myself. Anna’s teacher wrote me about 30 minutes later and said that Anna was in class and doing fine.

When she gets like this, I question everything. I question my decisions, I question my judgment, I question if I’m doing the right thing or causing harm. Tough love. Am I being responsible or cruel? Why is everything so hard for her all the time? When she gets physically aggressive… violent… I die inside a little. I worry so much about her. A thousand what-ifs run through my head. What if someone sees her and reports it? What if she gets taken away from us? What if she really hurts someone? What if I can’t be there for her? What if I die? What happens to her? I get so scared. She hit my mother in the face last week. When she’s raging, she says terrible and frightening things. I don’t see people talking about this aspect of raising a child with special needs. We need to talk about it. I feel so all alone most of the time. Even her professional team is very separated… endo says talk to neuro, neuro says talk to psych. I want to scream, “She is a whole person and she is suffering!”

It’s been a tough day. There will be consequences for her actions this morning; regardless if this behavior is under her control or not, Anna cannot hit people and she has to go to school. Tomorrow is a new day, hopefully a better day. I need to remember that we’ve had a nice run of good days recently and hold on to that… and I’ll remind her of that as well. She’s been working hard and if this isn’t totally under her control, then she needs love more than anything else in the whole world. Not tough love, just love.

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  • beckie - (((hugs))) I do not have experience with special needs children so I’m afraid I can’t offer any insights or advice. I simply wanted to say that I admire your openness and willingness to say things that others may not understand. To put yourself out there like that takes guts – and commitment and passion and love for your child(ren). I hope you find something that brings peace to your home and peace for Anna soon <3ReplyCancel

  • Nina - I’m sorry it’s been such a rough week. Tomorrow is a new day and you already made it through most of this week. Hugs, friend. <3ReplyCancel

  • Kimberly Leverett Osburn - Hi Holly,

    I wish there were something I could do to help. My daughter has two boys with Asperger’s Syndrome. It’s difficult to manage everything on a good day, much less when you, the child or maybe both of you are having a “bad” day. I pray the “good” days will out weigh the bad for you and your family. I wish you and Aimee could meet and talk. I know you’d have a lot in common and perhaps could lean on each other.ReplyCancel

  • Misty - You are a beautiful, patient, and truly great mother. Hugs to you as you all move through this. If I can help be an extrensic motivator let me know (movie night with Misty and Macie, etc.) Love you guys!ReplyCancel

  • Ashley Spaulding - Your honesty is so amazing. I know it can’t be easy for you to speak from your heart and share so much, but I hope you know you’re helping someone, somewhere. You, Holly, are a beautiful person and a wonderful mom, and even though it’s easier said than done, try to remember that you’re doing the absolute best you can…and your absolute best is a darn good job.ReplyCancel

  • Tracy Bradbury - Hugs Holly, you are a wonderful Mum and I too know all too well how difficult bringing a special needs child up is, we do need to talk about these things as all too often they just get swept under the carpet! Remember you are doing a fantastic job <3ReplyCancel

  • Heidi - You are an AMAZING mother! <3 You inspire me Holly-you really do. I know that what you go through is not easy-very few ppl get how gut wrenching it is, how hard it is to just carry on with a regular day and maintain some level of sanity and peace, and you do that AND more-Before I had a special needs kid, I admit that I did not 'get it.' Did I ever judge? NO. But nothing prepares you for how hard it really is or what families like ours go through, and your honesty in sharing it helps us all. <3 Before Joey, I used to think that my kid's behavior was a result of all my parenting decisions. Ha!!!! How naive I was…Then we had Joey and he has suffered from behavior like Anna's. And I KNOW it is not anything I have done, I KNOW it is totally 100% beyond my control and a result of his diseased brain. And I know that even though you know that, and I know that, we still question ourselves-it's what moms do. <3 But these things are beyond our control, and I want you to remind yourself of that when you doubt your decisions-you are managing this storm gracefully, Holly. You truly are. Some days are hard. You are strong my friend. <3 Praying for better days my friend. <3ReplyCancel

  • Rebecca Spencer - My dear sweet friend, you are a fabulous mother and have offered me so much support with my Theo over the years. Even last night you were there listening to my problems when you were so worried about your own child. Remember Holly please just how much you are loved and how many lives you have touched with your kindness. Rebecca xxxReplyCancel

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