Adoption Interview

Adoption Bloggers Interview Project 2012

Thursday, April 02, 2009

Autism Awareness Month


Today is Global Autism Awareness Day and April is National Autism Awareness Month. Several of the blogs I read have already begun to post entries that highlight some of the most crucial points that the general public needs to learn in order to make life for those with autism better. As the month progresses I intend to link to several of my favorite autism blogs as well as highlight some of the things we have learned from our brief (officially) stay on the spectrum. The most important thing we have learned is that autism is a spectrum. No two individuals on the spectrum present the same way and range from mildly affected and high functioning (Asperger's Syndrome) to severely disabled and unable to perform basic self care or even communicate verbally (severe forms of classic autism). Autism is commonly referred to as ASD (autism spectrum disorder) in the medical community and is a pervasive developmental disorder. It is neurological and is not something that a person can grow out of or be cured of. With treatment, significant improvements can be made, but the individual will always struggle with the challenges of their disorder. That's all I'll say today on autism, but stay tuned for further facts and personal anecdotes from our experience living with Hannah's Asperger's. Here's my first blogger writing about autism. His name is Cale and he's a college student living with autism himself. His blog is awesome and has tons of great information about autism. So, without further ado, I present to you Spectrum Siblings.

The past several weeks have been really rough for Hannah in the sleep department. Instead of getting better the longer we stay in the apartment, Hannah is having more and more trouble getting to and staying asleep. For most of her life Hannah has disliked going to sleep and has always seemed to sleep much less than other kids her age. Starting at around 6 months of age her sleep issues started. She began resisting sleep more and more. Once she moved from her crib to a big girl bed things got even trickier. To her normal screaming and crying she added banging on her door with her hands and head. She has wonderful stamina when it comes to resisting sleep and could go on for hours (her record is 3 hours 15 minutes after which I put a end to the torture-both hers and mine!). Once arriving in the apartment Hannah added a new trick to her repertoire-deliberately wetting her pull up to get us to come in and get her a dry one and take her to the bathroom. You might say, "how can you know it's on purpose?" The reason I know is that every time she had been taken to the bathroom only minutes before, she has not had a waking accident in ages, and the accident always happened within two minutes of us walking out the door of her room without fail. It was most definitely deliberate. Once that trick ceased to get the desired response she upped the ante. Next came deliberately having a poop accident. She hasn't had a poop accident expect for diarrhea attacks due to antibiotics since she became potty trained nearly a year ago! This was most definitely deliberate as it happened right after us leaving the room as well. Finally, her most recent tactic is making herself throw up on the carpet right in front of her door! She's done this twice now. I'm pretty much at my wits end. Things absolutely cannot continue like this, but I don't know what else to try. Reasoning with her, cracking down hard, just ignoring her, we've tried them all over the past 4 weeks and none seem to help. I'm sure this is somehow rooted in the move, but I'm not sure what to do about it or what the real issue is. Has anyone had something similar to this happen after a big transition such as moving or a new sibling? I'd welcome any advice you could give me. Please, just no suggestions such as a consistent bedtime routine or soft music. We are sleep issue veterans and have tried just about everything over the past 2+ years and this is not your average sleep problem. This is new even for Hannah.

Since we've been in Rhode Island our entertainment has been a bit different than what we are used to and it's been limited to what I've managed to find in my limited exploration. We've spent the most time at the Children's Museum which Hannah calls the adventure museum. She LOVES her adventure museum and asks to go to it practically every day. We've already recovered our membership dues twice over and we've only been in the state for just under a month! Though she's being exposed to lots of kids there, I still haven't been able to persuade her to interact with any of them really. We'll keep working on it though since she really does have a ton of fun going there. Another thing we have been doing quite regularly is going swimming in the pool here at the apartment. Hannah loves watching Kyle do dives into and out of the water and really wanted to be able to do a "dolphin whale" AKA a dolphin dive herself. Since she has tubes in her ears she's not able to go under the water without ear plugs. I ordered her some plugs and a band to go over them to keep her from picking at them and we waited eagerly for them to arrive. Hannah desperately wanted to be able to go under so we checked at the front desk every single day until the coveted package arrived. Hannah was so excited to put her ear plugs in and go swimming that first day. We took her down and she immediately wanted to go under. Once she did she was not keen on doing it again. Though we prepped her extensively about not breathing in while under water and taught her how to take a deep breath before going under, she came up sputtering and flailing from her brief under and up dunk. I figured it would not be a happy experience given how upset she gets when water gets into her eyes in the bath, but we gave it a try because she REALLY wanted to be like daddy. Another fun activity that Hannah has been enjoying is helping us prepare meals. She loves it so much that losing the privilege of helping, even if it's just pressing the buttons on the microwave to heat up leftovers, is the ultimate punishment. Unfortunately it's not enough to create a positive change in behavior, but it certainly makes her fighting mad!

Hannah is anxiously awaiting the arrival of the Easter Bunny. She's sent a constant barrage of questions towards me about the particulars of what the Easter Bunny does and how he does it. Since the bunny visited her last year and hid eggs around the house (and yes she does remember hunting for them even though she was only 18 months old!) she is convinced that the Easter Bunny lives in Indiana and will have to fly on a airplane to get to Rhode Island to hide her eggs this year! It made me laugh the first time she told me that, but my laughter has not deterred her from her insistence that the Easter Bunny will be arriving on an airplane. She's also informed me that the Easter Bunny is like Santa since he comes in secret at night. Since he is like Santa we will have to leave him carrots to eat like we left cookies and milk for Santa and carrots for Santa's reindeer. That little girl never ceases to amaze me.

6 comments:

Casdok said...

Thats a lovely idea to leave the Easter bunny some carrots! I also like the idea that he comes on a plane!!!

Saran said...

Thought you might like to see this - my cousin (and godson) made this music video about being autistic. Hope you enjoy!

http://www.youtube.com/watch?v=rsEsrLzqulw
Saran

PS just wanted to say too that you fill me with such awe and admiration! You guys are the best parents ever and I know I have learned so much from you already.

Saran said...

Hi Natalie - thanks for your comment :-)

Thought you might like this too ;-)

http://www.youtube.com/watch?v=zj8e8sg4pKE&feature=related

Another Mark special.
Saran

Rachel said...

Hi Natalie--I'm new to your blog and have enjoyed learning about your family's journey. I've been so touched by your story that I've left an award for you on my blog. Stop by when you get a chance.

Henda said...

I recently came accross your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


Elaina

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Megan Fischer, Providence Children's Museum said...

Hi Natalie - I'm thrilled to hear that you & Hannah have enjoyed visiting the Children's Museum so much! We've been thinking recently about how we can better serve autism spectrum children, and we'd love to chat with you about that since you know the Museum so well. If you're willing, I'd love to have you contact me at provcm@childrenmuseum.org or 273-5437 x126. Thanks!