It’s amazing how much harder it is to blog in the summertime. When Cordy’s regular special needs preschool ended, I worried how her behavior might change as a result of this change in routine. She needs that routine, so she knows what to expect each minute of the day. Without routine, she’s fidgety, hyperactive, defiant, and sometimes just plain manic. I was so excited when she was recommended for the district’s special needs summer school, knowing that some continuation of routine would be good for her.
The week between the end of class and the beginning of her summer school wasn’t too bad. She was a little off, but overall we found ways to keep her days filled with activity. Then summer school started, and she hated the new routine. Unlike the regular school year, she rode the bus both ways instead of just one way, her school day was longer, and she had new teachers and new classmates.
I had hoped that my Amazon warrior princess would adjust quickly to the new school. And she did adjust a little, but the last day of school was last Thursday, and she still cried getting onto the school bus, just like she did every day before that. She never wanted to go to school, begged to stay home, and occasionally told me she wanted to see her old teacher.
But even worse is that her behavior started to backslide even while in school. She would come home from school and be on the verge of a meltdown if we didn’t cater to her demands. There ae some weird new habits that she’s developed, like constantly putting her fingers in her mouth or licking her hands. And while potty training was starting to reach some success, for the past week and a half it’s been a complete failure.
Now summer school is over, and while she starts a camp next week, I’m ready to cry uncle. This backslide is so difficult. She’s still an adorable girl who charms everyone with her politeness – even while in a screaming fit, she’ll still answer your requests with “No, thank you!” Cordy also can melt your heart as she hugs you and says, “You’re my best friend.” But the manic running back and forth, the constant repetition of scripted phrases, the shrieks and screams when we do something she doesn’t like, and the self-inflicted injuries when we try to correct her are wearing me down.
I know that when it comes to autism, there are periods of growth and periods of regression, however we’ve had such a long up period that this downward tumble is painful to experience. I try to be a good mom, try not to take the screams personally and try not to take out my frustrations about her behavior on her. I know that she has trouble controlling her reactions to sensory stimuli and keeping her emotions in check.
Then Cordy pushes me too far, and I lash out at her, yelling, imposing strict punishments, followed by cooling down and crumpling to the floor, feeling like I’m not cut out for this kind of parenting. I wonder why me? How can someone like me – an average mom, fumbling along for the first time – be expected to pull this child out of the fog she’s often trapped in? Where’s my handbook on how to raise her to be a successful member of society?
The small bit of good news is that we just found out that we’ve been approved for funding through the county’s developmental disability office. This means we’ll be able to seek out more therapy and treatment for Cordy, with the county picking up any costs that insurance won’t. (Which means everything, since our health insurance will not cover any treatment for autism, considering it an “untreatable” condition. Bastards.) And they’ll help cover the costs for me to attend an autism conference in October, where I hope to learn more about how I can best help my daughter.
It’s a good thing that I’m getting on a plane for BlogHer on Thursday. I need an escape – just for a little while – from all of the stress at home. Hopefully I’ll be able to come back refreshed and ready to find new ways to handle any further backsliding Cordy may have.
(PS – Thanks for all of the well-wishes on my exam on Friday. I’m proud to say that not only did I pass, I scored the third best in my entire class. I guess I knew more than I thought I did!)
I am sorry you are having hard times. It sounds like a little me time at BlogHer is what you need. Sometimes it is hard to find time to care for yourself as the caregiver, but it gets really hard to give when you feel like you are running on empty. Glad you are making the trip and I hope to meet you there.
Congrats on the exam!
I think for a lot of us, BlogHer is arriving just when we need it most.
Glad you’ll be getting a break. (And congrats on the exam. We’re number three! We’re number three!)
Hang in there! All the moms of special needs kids are average moms. People will put us on pedestals but we are just like all the other moms, trying to do our best for our child.
Congratulations on your exam!
Sounds like BlogHer is coming at just the right time to get a bit of a break. See you soon!
I’m sorry it’s so tough; I can’t imagine what you’re going thru. To watch Cordy have such trouble, to question your own parenting–ugh. I’m hoping the small glimmer of hope in the county funding ends up helping a LOT. And take advantage of Blogher–have as much fun as you can! (And say hi to everyone from me!)
Aw, Christina, I wish I were around to meet you guys for a playdate or something… anything to help lighten your heavy load. Hang in there… she’ll be on the upswing again, and so will you. It must be nice to have Aaron around, at least.
They won’t cover it because it’s untreatable?? But how to they know it’s untreatable if they won’t treat it? It makes my head hurt.
my heart and well wishes go out to you, as a mom I know my first priority for my boys is making sure they feel safe and taken care of, I can’t imagine what it must be like to have a hurdle like this, i’ve said it before, she’s so lucky to have parents who are so keyed in to what she needs.
Good going on the test results!
Something I hear all the time is “I don’t know how you do it”…and that frustrates me because it makes me feel like I’m supposed to do it up to some unknown standard. Parenting, whether your child is special needs or critically ill, is just parenting and you have days when you feel like you’re ON…then you have those days when you know you’re one more tear or clenched jaw from DCF coming and taking it all away.
Thing to remember, you are the best mom she COULD have, you are the rock in her life and her greatest advocate. Whether you feel like it or not today, you are.
Have a good time at BlogHer, take care of you and you’ll feel so much more grounded when you get home.
I hope this time away is just the refresher you need. Have fun!
Congrats on the exam! I wasn’t worried 🙂
I’m sorry you are going through such a hard time with your daughter. Just be strong knowing you are the best, most capable loving person to get her through this.
I wish I were going to Blogher….I would give you a big squeeze! Have fun….
Is Cordy going back to her regular school environment in the Fall?
She may be more amenable to potty training then, when she’s back in her familiar environment.
Happened with my son after a vacation.
I can’t begin to imagine how frustrating this must be. I’m glad to hear that you guys are getting financial help, especially with the job situation right now.
Just enjoy yourself this weeked and relax. Maybe you’ll be a little better prepared for Cordy and Mira when you get back home.
mental hugs from NY! (and congrats on the test too, that’s awesome!) Its also awesome that you’ve been approved for the county program. (Little victories mean a lot too)
I used to work for an organization called Families Together in NYS. One of the things we did was put parents together with other parents dealing with similar situations. Would something like that help?
Oh goodness, I’m so sorry things are hard right now. Does your county’s EI have any playdate groups or message boards for families so you can meet other moms going through the same stuff?
Either way, I hope to meet you at Blogher this weekend. We’re currently in the Ups, more or less, but I know they only make the Downs worse sometimes.
I have been looking for that handbook for a really long time. This autism thing can throw you for a loop, I have been having one of those weeks as well. I just keep thinking that things may go up and down but at least they are going forward. Congrats on the funding, it should be really helpful.
Good luck at blogher
Eile
I am sorry things are not still in the upswing. If it is any consolation with regards to the toilet training thing, it is not going well with my sin either. He was doing really well, and now he is refusing to use the toilet at all.I am hoping that the backsliding is just a normal thing.
My son has Asperger’s/high functioning autism and the ups and downs you describe are very familiar to me. he is in second grade now… and has improved so much since his preschool days. It really does shift and get better, although there are still challenges ahead!
Have a great break and congratulations on your exam!!
My son did this when he started pre-k (january before last) it was sensory thing. He bit his nails constantly. He has since stopped. The extra therapy should help her a lot. I am still trying to get help! Right now he is not in therapy. We took a break over the summer.
TC can be very manic as well. He goes to daycare everyday and to ESY-extended school year (3 hours a day, 3 days a week) and he fusses about both! His excuse is always, “I am sick, I can’t go.”