Thank you as always for paragraphs are for pussies to Mrs. Kennedy
A little over two weeks ago, Charlotte, who just turned six, was diagnosed with Autism (DSM-IV 299.00). I thought MAYBE they might say she exhibits some behaviours consistent with Aspergers, but this was more expansive than I thought. Surprising. She has more difficulty with language than a a child with Aspergers, so she got bumped up.
“…qualitative impairment in social interaction, communication and restricted repetitive and stereotyped patters of behaviour, interests, or activities. Charlotte has significant difficulties using nonverbal behaviours, such as eye-to-eye gaze, facial expression, and body posture to regulate social interaction, developing age-appropriate peer relationships, spontaneously seeks to share enjoyment and interests or achievements with others, and she demonstrates a lack or emotional reciprocity. Her difficulties initiating and staining a conversation as well as her preoccupation with certain objects and nonfunctional routines, including pick eating, wanting certain pajamas, and difficulties with transitions (i.e. leaving parents to go into classroom), support this diagnosis.”
- In October there was a dust up in my world of online friends and community. My friends were hurt and I didn’t respond well, pissing off and hurting more people. Did not feel like blogging.
- Sewage, read POO in the basement. Twice. I cleaned it and now have post traumatic stress disorder.
- More plumbing woes in the form of not enough hot water. I need the hot water. Where I live is COLD.
- New meds! Weeee. Wooooah.
- The stress of a long time knee injury which occurred at 13 years of age has left me with osteoarthritis and an inability to do any weight bearing exercise with my left knee. My choices are swimming, aquasize, aquafit, aquajob, aquadance, aquayoga, aqua-pretend-treadmill?
- s-l-o-w-l-y sliding into the back a stupid Lexus SUVon an icy road, smushing my Camry grill for the low cost of $1300
- December was a clusterf*ck of getting ready for Christmas before the 18th, when we went to visit my inlaws (which was ok, they are conservative politically and religiously, so um, there is that). Everything that could be was wrapped and baked, including me.
- We got back late on the 23rd, my BioMom™ was here. Christmas eve at my mom’s, Christmas day here, save be Jesus.
- My 40th Birthday, December 31st.
- We left for a poker tournament on January 3rd in the Bahamas. I am not complaining, but it was a hella’ travel time from the west and it was cold and it was sort of spoiled by a spoiled and anxious me.
- All this time, these months, Charlotte had been in the process of being assessed by the school – Speech Pathologist, Occupational Therapist, Educational Psychologist and her teacher, OH! and us, we filled out lots of forms and questionnaires and talking and observing.
I think that is all I can muster right now. I have a respiratory infection and am bagged. I will bring my laptop to bed, instead of using SO MUCH energy typing at my desktop. Yes, I am way feeling sorry for myself. Sorry.
Happy 6th Birthday
brand new
I’m hugging you and sending you virtual chocolate bars and brownies. I’ve been the diagnosis route and know it well. If you need an ear or a shoulder, I’m here for you.
Comment by Carmen — February 5, 2010 @ 11:53 am
Sending love.
Comment by Chibi Jeebs — February 5, 2010 @ 11:55 am
THERE you are! Woah, you’ve not had an easy winter, huh?
I hope now that there’s a diagnosis that things start to move quickly to set up a framework for your beautiful girl.
Happy Birthday, Charlotte! My goodness, she looks lovely in her princess hat.
Comment by daysgoby — February 5, 2010 @ 12:30 pm
When I’m under stress, I really don’t want to talk about it. My feelings hurt.
Charlotte’s “symptoms” sound like they could be my Mr (Almost) 5: difficulty with transitions, needs to have certain clothing, preoccupation with certain objects, difficulty starting/sustaining conversations with other adults, picky eating, etc.
Comment by Juli Ryan — February 5, 2010 @ 12:40 pm
Love to you my sweetness.
Comment by Miss Grace — February 5, 2010 @ 12:46 pm
There! daysgoby said what I’d fumbled over in a few DMs to you. Framework. A new way forward, a tweak for everyone in terms of what she needs, what you need, what you all do to express and learn and love. You’ll get there. xo
Comment by sweetsalty kate — February 5, 2010 @ 12:46 pm
You are a tough and brave lady.
Comment by baltimoregal — February 5, 2010 @ 12:46 pm
Oh, honeypants, none of that sounds like fun. (Is it childish to think that you deserve fun?)
Although the princess dress sounds like fun.
Kids seem to be about The Great Unknown. (Which is probably why I’m too much of a wuss to have one.) But figuring out pieces of the puzzle is a step in the right direction. BIG LOVE!
Comment by Nina the slackmistress — February 5, 2010 @ 12:47 pm
I don’t really know what to say, I can’t imagine how isolating and scary all of this has been for you. Hang in there and take care of yourself, lady. xoxo
Comment by cindy w — February 5, 2010 @ 1:05 pm
Not sure what to say but I couldn’t leave without saying something. Hugs.
Comment by Sandi — February 5, 2010 @ 1:10 pm
Oh my. Sending healing, soothing thoughts your family’s way!
Comment by Caroline — February 5, 2010 @ 1:15 pm
If I were there I’d be giving you a big hug and offering you baked goods. I know those don’t solve any problems but they might make you feel a little better, right? “Autism” is a rather daunting word when applied to a child you love. One of my closest friends’ has a son who is diagnosed PDD-NOS and my older nephew is severely autistic, so I have a teeny bit of experience with it. But the diagnosis means help is on the way! I’ll keep you guys in my prayers for sure.
Belated happy birthday to you and Charlotte!
Comment by bethany actually — February 5, 2010 @ 1:45 pm
Hugs hugs hugs hugs hugs.
Comment by Leah — February 5, 2010 @ 1:56 pm
1. She is the same girl she was before the testing; she is still herself, still Charlotte.
2. I LOVE your birthday. I think I might SLIGHTLY prefer January 1st, but December 31st is second best—even with the unpleasantness of right-after-Christmas timing.
Comment by Swistle — February 5, 2010 @ 2:03 pm
Oh honey. Jenijen sent me your way. What a crapload for two strong but only human shoulders to bear.
Re your Charlotte’s autism diagnosis — It’s hard, so hard to get that news. But please believe that you’re going to be okay, even though your family’s path from this point might be different than you’d expected. Please also know that “autism” as a category is very broad, and the kids in that basket are incredibly diverse in terms of behaviors, language, and development. The most important thing to remember is that she’s got a label, not a sentence. Her future is as unknown, and as full of potential, as that of any other child.
You may find three pieces I wrote for BlogHer helpful:
How to think about kids with special needs in general: http://www.blogher.com/you-may-approach-short-bus
The importance of attitude: http://www.blogher.com/worst-parenting-day-ever
Also, and I hate to have to point this out, but there are entire industries dedicated to preying on autism families’ fears (and pocketbooks). Please be careful: http://www.blogher.com/identifying-and-avoiding-autism-cults
And for the sake of all that is holy do not listen to f*ing Jenny McCarthy! She’s aggressively, gullibly spreading autism misinformation:
http://www.squidalicious.com/2009/06/mother-warriors-extended-review.html
For a role model on parenting a girl with autism, may I suggest the fabulous DramaMama: http://likeashark.blogspot.com/
Please contact me if ever you need to. I’ll be thinking about you and your family.
Comment by Shannon/Squid — February 5, 2010 @ 2:29 pm
I’ve missed you! Thought it would be awkward to ask you where you’ve been ( really I’m a complete stranger). Things sound challenging but I hope you keep blogging.
Comment by Nicole — February 5, 2010 @ 2:54 pm
It’s hard to know where to start expressing when things pile up. It’s good to see you’re back on blogging. Charlotte is fortunate to have parents like you guys to help her figure the world out and get through life. She’s still 100% awesome and I wish we were still in Edmonton sometimes, so we could hang out. *hugs*
Comment by Chair — February 5, 2010 @ 3:30 pm
All I know to say is that I support you. Much love.
Comment by Helen Jane — February 5, 2010 @ 4:34 pm
That is a lot of process. Wow. Thinking of you through it all.
Comment by Amanda Brown — February 5, 2010 @ 5:53 pm
glad to you back. sorry about all the stress you’ve been under.
Comment by gorillabuns — February 5, 2010 @ 5:53 pm
Thinking of you, Jen. You’re gonna do OK, though. I promise.
Either way, I know it’s hard.
Comment by mihow — February 5, 2010 @ 6:01 pm
That kind of sounds like too much stuff all happening at the same time. Thinking of you. Hoping 2010 is upwards & onwards…
Comment by Emma — February 5, 2010 @ 6:26 pm
You guys are awesome. I should have led with the poooo in the basement. It was epic. Seriously though, thanks for the support, this IS SO much what I needed.
Comment by jennifer — February 5, 2010 @ 8:49 pm
Jen.
I’ve missed your writing.
\i am back in Edmonton. I am not loving it.
When I was buying/planting spring bulbs I was wishing you were there to advise me. I do not have a green thumb.
Is it any comfort to know that Alberta is considered one of the best places for kids with autism to live? When I was taking courses from an Australian woman, she told me that AB has a good record of intervention and support. It’s one of the reasons we came back. My son isn’t autistic but he has speech delay and \i think some other stuff going on which hasn’t been diagnosed yet.
Anyway, glad to see your back.
happy Birthday Charlotte.
meghan
Comment by Meghan — February 5, 2010 @ 9:05 pm
me again — this is the DramaMama post to read, about how her own attitude affects her parenting:
http://likeashark.blogspot.com/2009/07/mother-of-re-invention.html
Comment by Shannon/Squid — February 5, 2010 @ 10:07 pm
I love your guts, woman. You have been through a lot but I’m glad you’re still here. xoxoxoxoox
Comment by Loralee — February 7, 2010 @ 2:04 pm
Can’t even pretend to have something meaningful to say. Thinking of you and princess Charlotte. Love what Swistle said up there.
Comment by Alyce — February 8, 2010 @ 12:03 am
Much love from one of your random blog readers.
Comment by Leslie — February 8, 2010 @ 9:39 am
I love both those pictures! And I love the juxtaposition of them. Sweet, sweet Charlotte. Wait, isn’t there a movie called that?
I’m so sorry about the diagnosis. I can imagine how scary that would be. I’ll be thinking of you.
Is it inappropriate to say that it is very weirdly worded and hard to figure out what they are saying, exactly. It’s not grammatical. But I guess they talked about it with you so that you understand. Am I being a jerk? It just seems like they should take care with such things.
Comment by ozma — February 8, 2010 @ 4:24 pm
I think I didn’t give the best quote. I can scan all 20 pages if you want.
I will post some other parts of the assessment. Perhaps get some more feedback.
Comment by jennifer — February 8, 2010 @ 4:30 pm
gosh, thank you so much
Comment by jennifer — February 8, 2010 @ 4:30 pm
i want to reply to everyone, you guys are so nice. i am totally discombobulated. grieving, denial. confused. I know I am supposed to suck it up and say that everything will be ok, but I can’t right now.
Comment by jennifer — February 8, 2010 @ 4:31 pm
jennifer,
i don’t think you are supposed to “suck it up” and say that everything will be alright. I think you are supposed to be scared and probably angry and then you gather that energy to find out what the next step in the right direction is.
I am sorry that this is happening to you. wish i had a way to make it better.
meg
Comment by Meghan — February 8, 2010 @ 4:43 pm
Wow. I noticed you suddenly twittering a lot about autism and popped over here to see if I had missed something. Apparently I had. I honestly can’t imagine that the typical response to this diagnosis is to “suck it up.” Feeling discombobulated, grieving, in denial, and confused all seem reasonable to me. We’re talking about your baby here. I have no words of wisdom, but know that you have an internet full of understanding and caring listeners. Hopefully the diagnosis will help you find new coping methods that will make Charlotte’s life easier and happier.
In the meantime, happy birthday to your beautiful girl!
Hang in there!
Comment by Susie — February 8, 2010 @ 5:07 pm
Maybe not so much as “suck it up” but lots of it will be ok, which right now it hard, so hard to believe. I totally know people mean well. I DO know there is lots of support here. Great school system, Canada also had tons of resources, which are free. Right now we are just unsure of wait times, etc.
Comment by jennifer — February 8, 2010 @ 5:15 pm
Oh sweetie! I’m so sorry!! But, I have met Charlotte on a couple occasions and thought she was and is AND WILL ALWAYS BE just AMAZING!!! And with a mom like you (and a dad like your husband), I know that she can get though anything
You rock. xoxo
Comment by Jen Wilson — February 8, 2010 @ 7:57 pm
hey doll, what a hell of a winter you’ve had! thinking of you muchly of late, we need to commiserate. you know how to reach me.
Comment by secretboyfriend — February 9, 2010 @ 1:43 am
Oh Jen.
I want to call you but I’d cry too much. I have having mental breakdowns and PPD now and my heart hurts for you. You are good people and I hope the meds kick in gently and you get a chance to breathe through this ride.
Thinking of you.
Comment by dayment — February 10, 2010 @ 4:52 pm
I wanted you to know I am thinking of you, and know she IS the same girl she was before this diagnosis.
Comment by tbonegrl — February 14, 2010 @ 4:10 pm
Shannon directed me over here. Welcome to the autism parent club. There are so many great parents here to serve as a safety net, support group, source of information, inspiration, and advice. My son is almost nine and approaching the fifth anniversary of his diagnosis. I’ve found it helpful to read what others who have walked before me have experienced, and I hope I can help those who are following, as well. The diagnostic process when done right is exhausting, I know. On top of everything else you describe…take moments to yourself if you can.
Comment by Emily — February 14, 2010 @ 4:10 pm
Being an autistic adult, I know that being autistic is difficult, and it seems for parents something that’s very daunting. However, autism is a part of who I am, and who your daughter is. It’s a big struggle, and definitely not a typical life, but it is a valuable life full of all the ups and downs.
You are a strong and loving mother. Please know that you are not alone in this, that there are other supportive parents of autistic people, as well as supportive autistic people who want to help.
And please know that you’re always welcome.
~Corina Becker
Autism Women’s Network
Comment by Corina Becker — February 14, 2010 @ 4:15 pm
Does it help to say there are so many of us moms who have been in your shoes? So lean on the village of us you may not have noticed before. We all leaned hard in the beginning and are happy to try to give back some of the strength and knowledge other moms with kids on the autism spectrum gave us when we heard the diagnosis. First things first, it’s like on the plane where they say to put your mask before your child’s. Get some sleep, get healthy, get your mental state as non-depleted as you can, then start in. It takes a little time, but you’ll find a new “normal” and life WILL get easier. And remember that if you look just around that label, your child is still there just like before someone named the “isms”. The good thing is now you’ll learn how to best teach her, and you’ll both thrive. Not sure if any of that is helpful, but consider this a virtual hug.
Comment by Dana — February 14, 2010 @ 4:16 pm
I love you, Jen. Please call if you want, anytime. (DMing you my number.) I think I’m bringing Nate out to Alberta in April or May. I’ll come visit.
Comment by Assertagirl — February 14, 2010 @ 6:27 pm
Hello! Or rather, having read your post, hell! oh!
I’m so glad to get an update, especially as you’ve been having such a tough time. I’ve really missed you, missed you telling it like it is. I know Charlotte’s getting all the love and help she needs, but know that we are all here for you when you need that support too.
x
Comment by Alison — February 15, 2010 @ 9:25 am
So happy to see you posting again. I am so with you on this. My son just turned 13 and has Aspergers. They tried to “bump” him because of speech issues as well. I don’t concur. Everything else fits. I do believe, they are re-examining this and possibly changing the parameters. Autism is a “spectrum” though and I don’t believe any child that is Autistic is exactly the same, the symptoms range as much as your emotions as a parent of an autistic kiddo do. I know a “diagnosis” is important, I wanted SOME kind of answer. SOME kind of diagnosis. I have learned over the years that the actual name for his Autism is not important, the umbrella of Autism is so large, it’s more important to deal with his individual struggles and issues. Does this make sense? I am late for work but I had to ring in on this, because I wanted to you to know you are not alone in this. There are those of us out there that understand and I think it’s so important to know this- at least it is to me
((hugs)) to you and your girly
Comment by Tracy — February 16, 2010 @ 8:25 am
Hi Jen….I’m coming out of lurkdome to let you know (as you’ve read above) that I understand. My daughter, now 7, was diagnosed almost 2 years ago with Asperger’s. I understand how you’re feeling…the “well, what the fuck do we do now?”….the grieving for the future you thought Charlotte would have…the realization (at least for me) that the parts that you hate and make you crazy about your child are not going away anytime soon. However, like many others have previously said. She is still your Charlotte. Your cute as heck, wonderful little girl. This changes nothing…only a push in the direction of other things that will help her succeed.
The anger, the hurt, the confusion…they all come and go. They become not as mind-consuming…they wane until they no longer take up all your thoughts. Most of mine now come in the form of….ok, how can I get her to do what needs to be done…?
Creativity of thoughts. I get angry when I think about how much extra work it entails to raise her compared to her sister….it’s hard to remember when she’s volatile and out of control that it isn’t her fault, she’s not trying to be difficult.
She is still my daughter…..she hasn’t changed. She’s grown so much over the past few years….and I know Charlotte has too….sometimes it helps to remember things that used to be so hard that she eventually figured out. Maybe it took longer than other kids her age, but she still “got” them. It takes time….which, when you remember how young she is, she has a lot of.
Comment by Ness — February 17, 2010 @ 10:05 am
As with Nicole above, a complete stranger here who missed you and thought often about how you were doing. I’m so glad you’re “back” (and on Twitter, too!) and wish you much strength.
Comment by carolyn — February 22, 2010 @ 12:08 pm