Roller Coaster of Autism

Raising a daughter with autism is a lot like riding a roller coaster. One minute you’re climbing high, watching your child make huge gains and seeing nothing but the blue sky above you when it comes to success. Then the next minute you’re hurtling downwards, out of control as you watch the ground come at you quickly, closing your eyes to block out your fear of all that progress crashing down with you, but quietly wishing you’d hurry up and hit bottom already. Then suddenly you pull up again, grateful to be released from the free-fall, wondering if you can stomach the next curve.

The past few weeks have been rough for Cordy, and as a result rough for us as well. After coming off the high of finding out that our daughter is excelling in academics and hearing so much praise from her teachers, we’re seeing a totally different child at home.

It’s hard for me to put into words what’s different about her. She’s…moody. The slightest verbal correction sends her either into a fit about how she’ll never get to do [insert activity she was doing] ever again, or sometimes a panic attack that we’ll hit her or send her to jail for some minor offense. (For the record, we don’t hit her. Just wanted to make that clear up front.)

She’s always been someone who sees only black and white with most issues, but lately everything has been even blacker and whiter. There is only one way to do things, and you can’t tell her otherwise. Any change in direction and suddenly it’s like the world is splitting apart at the seams.

She’s stopped sleeping again. She goes to bed at her normal time, but when I leave for work I’ll often still hear her talking in her room. On nights when I’m home, I sometimes wake up at 2am or 3am and still hear her talking to herself in her room. And yet she still bounds out of her room at 6:15am. Occasionally she’ll crash hard in the middle of the day – about a month ago there was a tornado warning while she was at school, and apparently while they crouched in the school hallway, sirens blaring, she fell asleep. But there seems to be no pattern to her sleep cycles.

Cordy has also started destructive behaviors – she’s unraveling socks at an alarming rate now. She insists on wearing socks at all times, but she has been putting holes in at least a few every week, sometimes completely unraveling the sock down to the bottom of the cuff. She’s also scratching herself raw at times and picking at her lips, sometimes until they bleed.

What bothers me the most is that Cordy wants to be alone even more lately. She comes home from school and usually within the first 15 minutes, she’s either absorbed in an activity book, or she disappears to another room to “make up her stories.” She likes to create stories, but she insists on making them in private and then she doesn’t like to share them. If anyone should come into the room, she gets upset and demands they leave. Peeking in on her, I often find her pacing back and forth, flapping her hands and talking to herself, usually quoting lines from TV shows. This is often what she’s doing in the middle of the night, too.

Sometimes I get so frustrated that she won’t let me into her world. If I ask her how her day went at school, she responds, “Mom, I don’t want to talk. I just want to watch TV.” If I ask her how she’s feeling, she whines and tries to avoid me. When I ask her to tell me one of her stories, she tells me that she doesn’t like to tell them to anyone. I feel like I can’t get through to her, and I sometimes worry that feeling will create a divide between us. I know I shouldn’t take it personally, but when your 6 year old keeps telling you to leave her alone, and you go an entire night in different rooms, it starts to have an effect.

Many of these behaviors have been with her for some time, but over the past few weeks they’ve intensified to the point that sometimes she’s incredibly difficult to live with. I can’t pinpoint what’s causing these changes, either, which leaves me feeling helpless. It’s quite possible the overstimulation of the holidays is affecting her, but I don’t know how to tone it down any more to keep her happy. Something at school could be affecting her, too – she never seems as happy when she gets off the bus anymore.

I really had no point to this post. I just needed to get this off my chest and admit that while I love my daughter, I’m having a hard time dealing with her lately. She was so happy earlier this year and now I feel like she’s morphed into some sullen emo teenager who is angry that we never let her do what she wants and never leave her alone enough. I want my smiling little girl back (I have tears in my eyes as I write that because I know what a little ray of sunshine she has been) and I want her to be at least a little more interested in her family.

I understand social interaction is hard for Cordy – such is the nature of autism – but I refuse to let autism take her away from me. I’ve been crazy busy with work, but I’ll somehow find the time to do more for her if needed. But what is there to do? I have no idea what steps to take next.

Back to that roller coaster image, since I have no idea how to even end this stream of consciousness: my eyes are currently squeezed shut tight and I’m hoping this is just a small dip in the ride and soon we’ll be on that upward climb again. Because right now the ground is a little too close for my liking.

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Comments

  1. Bub went through a phase like this recently as well. It sounds like Cordy is stressed, and she’s taking steps to try to relieve her anxiety. If there is no obvious new external stress, it may mean that the source of stress is internal – that Cordy is in the process of making a developmental leap, possibly becoming more aware of the social world around her and struggling to adapt to that new awareness. I usually find with Bub that when he emerges from a difficult phase like that, he’s suddenly at a new level in terms of his language use and social awareness.

  2. Awwe I am so sorry she has gone a few steps back and I hope that she will find the calm after the storm quickly! You are a great mom, she is in there she will emerge again. Try to keep loving her and not to get to frustrated! Love!

  3. It might also be something that could be pinpointed at school– a message to the teacher about her behavior changes at home could bring an illuminating response.

  4. I wish I had the words to make you feel better. But knowing how in tune you are with your lovely daughters, I know you’ll figure this situation out. Much love to you all.

  5. I agree with Karenina, it could be something at the school. With the holidays quickly approaching is it possible that they are giving out treats in class that Cordy shouldn’t have due to the artificial stuff in them? I would maybe see if you could make a visit to the school to see what’s up.

  6. Anonymous says:

    Christina, I have no words of advice but I do want to share with you how much I have learned from reading your blog. I don’t have any children although I want to someday. I was totally one of those people who was judgemental when witnessing a child having a melt-down or acting out. I would think to myself ‘if that was my child…..’ and I would make all kinds of assumptions about the parents and the child. After reading your entire blog and Amalah’s blog (sweet Noah) I stop and think first. I consider the possibilities, I consider the fact I don’t know those people or their situation, I consider the fact the parent is already embarrassed enough already without having strangers make all kinds of assumptions about them. I see a boy almost every day who gets off at my train stop with his mother (live in NYC) and he always has this really old, beat-up rag with him which he flaps around while he walks down the sidewalk. He also walks on his tip-toes exclusively. Before i would not have recognized those as signs of Autism or a spectoral disorder but now it is so obvious to me because of what I have read and learned from you sharing Cordy with us. So, thank you. Thank you for helping to make me a better person, for giving me the knowledge and perspective which allows me to be more accepting, more empathetic. Cordy is a very special little girl and I am so glad I have the opportunity to know her just a little bit.

  7. Having raised an autistic son quite a few years ago I feel your pain. There is no accounting for an autistic child’s behavior in most instances. And to make things worse–every child is different. What worked for me or someone else in the same situation probably won’t work for you and Cordy. My best advice to you is to just let her be. This behavior, too, shall pass. Autistic children need a lot of space, a lot of love and buckets of understanding. Trust me, by her being in her own world does not mean she’s leaving you. She needs you close by but she also needs to live in her world. We can’t force them to join our world. It just doesn’t work that way.

  8. I can’t imagine how challenging this is for you. I have enough of a hard time raising a strong willed child that most would call “NORMAL”.
    Sometimes I feel like I get a bit too close to the ground and I know how much encouraging comments and thoughts from others, even strangers, can help me out.
    I needed to leave you a note, even though I don’t have a lot to say that can help you. Sometimes it helps just to know that people care.

  9. It has got to be tough to want to love your child up and not have them want to interact with you. As someone who is a big introvert, I can relate to Cordy, though. Interacting with people in many cases is NOT fun for me. It doesn’t feel good. It wears me out. I get drained by it and simply have to have time to myself to recover (this is one BIG reason I never had kids).

    She isn’t “normal” but she is what she is. The things that fulfill other people don’t fulfill her. Finding what makes her comfortable and happy will probably be a lifetime process.

    Hugs. You are a good mom and a great person.

  10. I have an autistic daughter who is now 20. Whatever is changing is likely at school. It may not be a big change, but its enough to throw things off in her world. I always believed in our home being a sanctuary for my daughter and it got us through some very rocky teen years. Its worth having a word with the school to see what may have changed socially in her world. Academics is not be-all end-all. And be aware that she goes through the changes around teen years, it will likely take her longer, hit her harder and be harder for you. Two suggestions…
    You might ask her if she needs anything to help her cope. More socks? Different pencils? A night light?
    And, you will likely have to adjust to seeing a little less of her. If I engage my daughter in an activity she particularly enjoys, such as baking, or a movie she really likes, she will stay downstairs with me. But I know she really needs the time alone to cope with the stress of the day and work on her stories.

  11. My son is just 3 1/2, but we see these ups and downs as well. I’m so full of hope for the future one week, then the next I feel like he may never talk at all. The behaviors are hard and there is no way around it. As you say, these periods leave as quickly and suddenly as they came and you can only hope that there is some clarity that comes out of it, and maybe a developmental leap like others suggest. Be strong – you can do it!

  12. Nearly every year the coming holidays seem to ratchet up the frenzy in my son’s mind. Also, I’m sure you know that great bursts of academic progress can go hand-in-hand with behavioral meltdowns.

    In P, I find that lack of sleep makes him worse, and he is a night person. Another friend has suggested melatonin for those really difficult nights.

    P needs to be alone a lot as well. What works with us is when I come over to give him a kiss or a hug and then walk away. That allows him to know I’m there and at the same time, he trusts me to give him his space most of the time. Sometimes we can work on our “stuff” at the same table without talking.

    No matter what else is going on, she’s going to need her sleep. You might want to talk to her Dr. about this and see whether the melatonin is an option.

    Hang in there. She knows you love her.

  13. Sending you a huge hug. Justin’s issues are less obvious than Cordy’s, but so much of it sounds similar. Like every child, she’s going to go through stages. I know that her stages are scarier than just “Oh, Billy isn’t liking his nickname anymore”.

    Have you ever had her in therapy? Just to establish a confidant who can work with her to help her continue to bridge the gaps in relationships?

    All I can say is remember that this is a stage. She’s only 6 and you CAN get her to become an active part of the family. It may just take a lot longer than you hope and may involve several steps backward before she gains any progress…

  14. I’m sorry. Children can be so difficult sometimes, even without the added struggles of autism. I hope that maybe Bea is onto something and she’ll come out of it. I wish I had some advice or something to share, but all I have is big, huge internet hugs for you.

  15. I’m librarian at an Elementary school and the weeks between T’Day and Christmas holidays are very hard on our AU kids. They come back to school after 5 days and have to get accustomed to the routine of school. No sooner do they do that than the routine is disrupted with Christmas programs and other schedule busters.Plus, they get dragged to the cafeteria or where ever for all sorts of Holiday programs which they hate because of the noise levels. Teachers tend to be exhausted and end up taking a couple of days for R&R which means subs, which always upsets the AU students.
    The holiday season is very difficult for kids who thrive on routine.

  16. I’m librarian at an Elementary school and the weeks between T’Day and Christmas holidays are very hard on our AU kids. They come back to school after 5 days and have to get accustomed to the routine of school. No sooner do they do that than the routine is disrupted with Christmas programs and other schedule busters.Plus, they get dragged to the cafeteria or where ever for all sorts of Holiday programs which they hate because of the noise levels. Teachers tend to be exhausted and end up taking a couple of days for R&R which means subs, which always upsets the AU students.
    The holiday season is very difficult for kids who thrive on routine.

  17. Huge hug sent your way! My strong willed 5-going-on-15 year old has been having melt downs when we don’t do something her way immediately, the last 2 weeks. She’s starting to get better about it, but I do think it’s partially the holidays between T-giving and Xmas. I can only imagine how stressful it is when she is not sleeping as well. Just take the best care of her she will allow and she knows you are there for her and home is a “safe space” to regroup from whatever stress she is dealing with. The coaster will go up again!

  18. wow, just want you to know my thoughts are with you and yours. In the years that I’ve known you I’ve always been impressed with your writing and with the obvious commitment to both of your daughters, and it’s crystal clear that you’re a great mom. And I’m confident Cordy thinks so too.

  19. Bright side:
    You will be way better equipped to deal with your sullen emo teenage girls than we will be.
    (Did that help?)

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