Saturday, December 31, 2011

Christmas

I tried to make sure a decent portion of the gifts I gave this year were handmade. People at work got ribbon scarves or ornaments. A good friend got knit fingerless gloves. These kimono sweatshirts were easy and fun to make. I got the pattern from Stitch magazine but I had to figure out the 3T size myself. I ended up giving these to the girls before the holidays because I couldn't wait to see if they fit.



Finding gifts for Sam is always tough. This tin of popcorn (kinda gross, I know) was a big hit and he was very excited. He seemed to know it was his. We also got him a set of bristle blocks but so far they haven't been as great as I had hoped. Maybe they will grow on him.




I knit Hannah a sweater that came out very well although it is too big at the moment. I also need to tighten up the button holes or put on new buttons.







I finally gave Hannah the quilt I made for her this summer. It is my first quilt and I can't wait to make another one.






I also made the girls matching jumper dresses but somehow I managed to forget to take a picture. They may not get worn much at the moment because Hannah is crawling like crazy and so dresses are not the best option for her. The style is very easy though and I expect it will still fit when she walks.





The girsl got stuff that was not handmade as well. Hannah has a nice selection of noisy rattles and an adorable pair of shoes. Maya also got shoes (she loves shoes. . . ) and a "big girl doll". It was not one of THOSE dolls that cost an arm and a leg (I remember when they were 68 dollars and I started a cat feeding business to save up for one). It was an imitation but it is just as good especially for a 3 year old. I made the doll some pajamas because Maya pointed out she had nothing to wear to bed!








I finally found someone selling the Oliver + S Bedtime Story Pajamas pattern on Esty so that is on the way. I have plenty of fabric just waiting to be used. I think that pattern is one I can actually make for Sam. Now for a day or two dedicated to sewing. . .



Tuesday, December 27, 2011

No such thing as a vacation/ no more travel

Sam's school made lots of promises back in early November. The most important were that they said they would help me negotiate respite care with DDD and they said they had "connections" and could send over a cheap carpenter to help me modify the home to create a couple of "safe spaces" for Sam when he is having a tantrum or being too destructive.

SOme posts I started but never got to finish explained the reasons why we need safe spaces - the short of it is Sam has had a few episodes in which he has hurt the girls and damaged the house. Much of it was due to a medication reaction (he is off the med) but some of it was just Sam realizing his own size and power. Once you know you can't unknow. . .

None of the promises came true. I suspect no one followed up with DDD but that is not my primary concern. I am wary of random respite care. I called various people and (politely) reminded them that because of their lack of action the girls and I were about to spend a week with Sam with no way to manage him if he gets worked up (other than perhaps to sit on him but i think he might be able to fight he way put from under me if I tried - I tried, by the way).

I believe my case manager must have been a little annoyed at the school because she also thought they would get this done. She got permission for our home program teachers to come over break ( I am surethey are thrilled but truthfully I don't care. After they do their time they get to go home to their typical families and not listen to the constant clatter of objects hitting the floor). The school also gave us 5 hours through their budget (Sam is basically in an out-of-district placement). I got some hours through health insurance and so while it is not perfect, I have put together a decent program for him. I hope I can do as well in the summer.

Last year we realized that we were no longer going to be able to travel for Christmas or Hanukah. Family members kindly say "we don't mind" and " we will help keep an eye on him" . but when their books get ripped and their stuff hits the floor, they mind. To truly keep an eye on Sam you must stay 2 steps behind him every waking minute and be ready to physically move him if he gets out of control.

So for some reason we decided to travel on xmas day. My sister lives just over 2 hrs away and next summer she and her family are moving to California ( my sadness on that one is a post in itself). The drive there was smooth. The visit was terrible. Mark and I took shifts following him trying to prevent disaster but neither one of us really relaxed or got to enjoy the people we were there to see. Mark and I were unhappy but most of all we realized how unfair it was to Sam. There was nothing he could do. In our house we may hate the dropping but when we can limit it to blocks and toys we live with it because there is no choice. Our floors are damaged and we wish we had good earplugs sometimes but it is what it is. In someone else's home Sam is over stimulated and he is basically not allowed to do anything because nothing he does is appropriate.

The ride back was scary. Early on we hit MAJOR traffic. We were at a near standstill for almost an hour and Sam FLIPPED out. He screamed at the top of his lungs, threw anything he could gets his hands on, kicked the front seat with all his strength, tried to escape his seatbelt, and tried to hurt Maya. Mark had a hunch the traffic was due to an accident so he got off at an exit that took us east and we took a chace that it would eventually hit a route that went north. After about 25 minute it did and we were ok. Sam loves car rides as long as we are moving.

So no more travel. For real this time. Unless I get a visit from the mini van fairy and I find a safety harness Sam ca't get out of. And I don't see those things appearing any time soon.

Wednesday, December 21, 2011

Where did the time go?



Time to knit a new hat.

Sunday, November 13, 2011

Zoo Boo and the Storm




One of the things that went really well this month was a trip we took to an event at the local zoo. One weekend in October they decorate the zoo for Halloween and open the zoo at night (must buy tickets in advance). Kids walk around an "trick or treat" around the zoo. Local businesses and charities set up "trick or treat" tables at various locations around the zoo. I was determined to go this year - and I was determined to try to bring Sam . A friend was able to pick up tickets for me which was a huge factor in our being able to do this.




We went on a Friday night. Sam wore a sweatshirt with a glow in the dark skeleton printed on it. It is about as much costume as he can tolerate. He has been able to use it for the past 2 years and I am hoping to find something similar in a bigger size next year! Maya dressed up like (a fully clothed) Ariel from The Little Mermaid (he interest in being a Disney princess was much to my dismay - I know I could have vetoed the costume but I had a weak moment). Hannah wore a jacket with bear ears and pants with paws on the feet.



We got there a little early (note to self- go a little later next time) so we had to wait in line for the gate to open. Sam had a hard time but he got through it without stealing anyone's water bottle and smashing in on the ground. With the help of a pocket full of small treats, he managed to stay with me and not run away.



Sam walked around with us pretty well. He tried to steal and throw water bottles at every table and he didn't understand the concept of taking ONE piece of candy. Maya had a ball!! She was so excited to see some spooky (or as she says it, "booky") things.




We kept moving and made the rounds pretty quickly. We decided not to take any chances and left on a good note. I was on cloud nine the whole ride home because we actually did something all together.




I am very glad we went because the real Halloween was preceded by a huge nor'easter. The Saturday before we were hit with snow and ice that downed power lines and knocked the power out for days. We had a few dark cold nights but we were in better shape than many since we got power back for good by the tuesday followong the storm. The storm was prodigious. During the snow a bunch of us on our street stood outside to survey the snowfall and every few minutes we would hear a loud "crack" and another huge branch would fall. Maya got some good snow play time on Sunday. Sam had a number of fits because he couldn't flick the light switches or listen to music. Many schools closed for a few days due to power problems and tree damage. On the "real" Halloween I took the kids to a few houses but due to all the ice and branches on the ground we were limited.




The photos:



Zoo Boo









The snow:




Maya having fun:







Keeping the baby warm because we had no power/heat:




Friday, November 11, 2011

I haven't posted for a while. It has been a bad month. The sleep situation sucks, the destructive behaviors are in full force every waking minute (and since sleep is rare, that is a lot of destruction), and we are all feeling frayed.

We switched to a new neurologist in the hope the he may have new suggestions. So far it is not promising.

The good news is that I secured some additional services for Sam through the health insurance so we get a couple of hours of respite on the weekend while Sam is at some special needs classes. I use it to try to do normal kid stuff with Maya like arts and crafts that she can't do with Sam at home.

I honestly don't know if I could feel like a crappier parent these days. The horrible angry vemon that spews from my mouth when Sam smashes something in the kitchen or rips up another book is terrible. I have lost all self control in that area. Between the nursing baby and Sam's night time fits I have not had more than an hour or two of uninterupted sleep in months and usually I am awake from about 1 or 2 am on due to all the wake-ups. My hair is falling out and my eczema is consuming my hands. I am very angry at myself for not being able to maintain a little more composure.

I have had many ideas for posts but I have been too tired or pissed off to concentrate and write them.

Sunday, October 2, 2011

ISam

I started this post at 4 this morning after yet another sleepless night. For some reason, the magic cocktail that had Sam sleeping for the majority of the night stopped working a couple of days ago. But that is the subject of another post.

When I saw that Sam was number 19 on a list of 20 at the Mission Ipossible site, I really thought it would be a year or more before enough funds were raised to purchase his ipad. What has happened over the past few months has been amazing to watch.


I got an email from Ken, one of the people in charge of Mission Ipossible, earlier in the week letting me know that Sam's ipad was on the way. Since I am a teacher, I was home for the Jewish New Year and I was able to watch for the mail. Friday at 11, this box was on my front step. My mailman was a little lax with the signature required issue (although to be be fair he could probably hear the dog going nuts and me yelling at her so he knew I was home).





Is that the most neatly wrapped box you have ever seen?


I started to open it up while Sam was with one of his home therapists. I had to move from place to place as I opened because I knew Maya would go bananas when she realized what was inside. To my surprise, as I pulled apart the layers of bubble wrap, I found a bag of little toys and this little guy. That's a Dream Date Gonzo in case you can't tell (What are you trying to say, Ken? ).




Then I pulled out this:






Seriously, the wrapping job was amazing. Neat tape, perfect corners, no wrinkles. I distracted Sam when therapy was over by leaving the shipping box out. This is Sam balancing it on the edge of the table. He is gearing up to watch it drop again and again and again and again. . . . .





I left the bubble wrap on the floor to see how long it would take the kids to discover it.




30 seconds.

WHile they popped bubbles I took a look at this. I didn't try to get Sam to unwrap it. He CAN rip paper but he doesn't understand the meaning of a present and won't attend to the task.Over the course of the afternoon I set up the ipad with simple apps. One of Sam's home therapists has her own and so I already knew a few things that were worth getting. Maya ended up being the first to play with it because there was a crazy 3 kids yelling at me all at once moment and it gave her something to do for a while.


Sam didn't really "get" it when I showed him that we have our own ipad now. I felt a tiny twinge of jealousy each time I read an "i" post detailing a kid's enthusiasm over the new device. For us this is going to be a way to try to focus his attention and, hopefully, communicate. I would LOVE it if Sam could develop some recreation skills but I think it is unlikely. WHen I sit him down, Sam can do simple shape puzzles and discrete trial programs. We are working up to investing in the big guns - Proloquo2go. What is amazing is that the kid who had to be taught to point with his pointer finger in early intervention understood the concept of the touch screen right away.

Is this an instant game changer for Sam? No. But I see a lot of possibilities (Ipossibilities? Too corny?) The ipad is an amazing teaching tool that will allow us to work where ever we are without lugging tons of supplies. Hopefully, once we get speech software and Sam is able to hear the ipad speak for him he will find that motivating and appreciate it even more.





I am trying not to drip my wet hair on the ipad.




Here is Sam doing a shape puzzle ( no pieces to throw or eat!!!):








Here he is doing a discrete trial program for color identification (bonus-no flashcards for Sam to fold and chew):








My deep heartfelt thanks to the people at Mission Ipossible and the community of donors without whom this gift would not have been posisble.





Saturday, September 3, 2011

Recent Projects, Baby Hannah, and Sam with Water

I recently made Maya two skirts using an Oliver and S free pattern. You can make your own using these very EASY directions:http://www.oliverands.com/blog/2008/08/lazy-days-skirt-free-pattern.html













The bottom skirt is made from a great remnant I got at the fabric store and some pretty blue ribbon. The top one is polka dot Riley Blake fabric with ric rac trim. Maya LOVES them and has worn them every day this week. I think I will need to make a few more soon. SHe calls them her big girl skirts and tell me she is going to wear them to school.




The project below is a knit necklace I made my sister for her birthday. The kit is from Jimmy Beans Wool (http://www.jimmybeanswool.com/). the yarn is a beautiful silk/merino blens and the tiny beads are glass. I designed some simple earrings to go with it to make a nice set. I hope they wear well.










We have been adjusting to life with three children. Hannah is a pretty easy going baby as long as mommy is in sight. She does not get through the night without nursing a few times but I don't really mind. She goes to bed in her crib and then after her first wake-up she sleeps with me. She is growing FAST. At five months she was 17 lbs 6 oz. Since she was born earlier in the year than Maya and she is growing faster my goal of trying to only re-use Maya's clothes is not going to work out (I got her a few things of her own at first but I was hoping to limit the shoppingas much as possible). I caved and bought her more short sleeve items to last into the early fall. There she is on my lap.





Maya loves to be a big sister but she has some jealousy to manage. She also wants desperately to play with Hannah and finds it hard to be gentle. She is not displaying anything out of the normal range of sibling adjustment. Whenever I take a picture of Hannah, Maya wants in on the action.








Sam loves water as much as he did last year. He has a water table on the deck which I fill a few times a day. He has various items thathe dunks and then lines up on the table or the railing. He also has Mega Blocks (like large legos) that he lines up on the table upside down. THen he sucks up a mouthful of water and fills each block to the brim. Then he knocks them off the table and repeats. The only problem with the water play is that he ends up drinking a lot of the water. He pees and pees all afternoon and then wets the bed at night. I think I am going to have to cut off the water play at 4 from now on to see if that helps. He refuses to go back to pull ups at night (and I don't really want to anyway). Here is my tall handsome boy with a selection of water filled items:












Thursday, September 1, 2011

Watching through the window and simple goals

Summer is winding down and I am feeling that mix of emotions that comes with "back to school" time. I anticipate the extra fatigue of having to get the girls and myself out the door by 7am after interupted nights. Then I will teach all day, pickup the kids, manage Sam's afternoon therapies, try to keep up with the house and grading only to go to bed expecting, at best, an hour or two of sleep at a time. I feel sad about not being with the girls during the day. I feel guilty about NOT being sad about time away from Sam ( I don't know how you homeschooling moms do it). I feel frustrated before Sam's school year even starts because I am pretty sure we will see little progress again this year. Who knows, maybe Sam might be able to get to 3 whole minutes on his "waiting" program. (insert sarcastic eye roll here)

I also feel a little down that yet again we have done nothing away from home as a family. I have been watching through the window while neighbors pack their bags and their cars and head out to make memories at the beach or in Europe or at a campsite. I am not dreaming of a a resort vacation but a day or two at a lake or the ocean would be nice. My mother, my sister (with her husband and son) and my father all ended up on holiday in England (my parents are British) this summer. They were there at different times but they got to see the places we lived/visited when I was a child. They got to see where my grandparents ashes were scattered. jealous. jealous. jealous. I was so jealous I felt sick to my stomach. I know it is selfish and stupid when considered along with all the real problems in the world but that it how I felt. Yet again this year I thought about buying a bathing suit but didn't. Yet again I didn't need it. I can't blame it all on autism. We couldn't have afforded a trip even if Sam were typical.

So, can we pick up your mail? Sure, we are not going anywhere. Can we pick up the papers? Sure, we are not going anywhere. Keep an eye on the house? Sure, we are not. going. anywhere.

* * * * * *

I have been keeping a mental list of simple things that would make life a little nicer here at home. I am hoping to add these into Sam's home program over the next year. Some of these goals are more about me than Sam

1. I would like to be able to take a walk - a long one. I have had three kids now and I need some excercise. We actually started this one already by teaching Sam to hold the stroller and walk with me. He gets Skittles every so often if he "walks nicely". If anyone has a more natural alternative for Skittles please tell me. They gross me out but Sam won't go for jelly beans or gummies with natural colors and flavors. He has done pretty well. A few block is he starts jumping up and down osessively and hooting but we will keep at it.

2. I would like to be able to sit together at the table for more than 2 minutes.

3. I would like to be able to have something to drink with dinner. If I bring a glass of water to the table Sam will either steal it and spill it, stick his hand in it, or break the glass. If I use a plastic cup he will go bananas wanting to play with it.

4. I would like to put the books back on my bookshelves and know that Sam will not destroy them.

5. I would like to be able to take Sam to the grocery store and not have him try to knock all the cans off the shelves.

6. I would like to be able to spend a day at a beach next summer - any beach. I don't expect to get any relaxation from this but I want to girls to have summer memories that include sand and water.

I had more goals on my mental list but I can't recall them right now. Sam has been up since four and the baby still nurses during the night so that might have something to do with it.

Monday, August 15, 2011

Good Work

Good work is being done over here:
www.missionipossible.blogspot.com

Take a look at all the wonderful kids who have their ipads now. Sam is on the list (#19).

If you know any philanthropists, send them over as well : )


Thursday, August 11, 2011

Funny


Sam has trouble pulling his pants up properly after using the toilet. He sits to pee and often his pants and underwear go too far down for him to get back up on his own. Sam's solution is usually to just step out of them and be naked from the waist down. After dinner yesterday I heard him go pee. Then I saw him prance out of the bathroom without any shorts. It had been a looooong day so I shrugged and said "whatever". Less than a minute later I walked into the living room to see this:

Just hanging out on the couch in his birthday suit. Very pleased with himself.



Sam goes through periods of obsession with different things. Thankfully his book (and by book I mean destroying books) obsession is lessening (at home at least). He has gone back to obsessively stacking and dropping/throwing blocks. It appears that there is no pattern or meaning to what he is doing but every so often the stacks look like this:








Interesting.





Thursday, July 28, 2011

Maintaining Sanity






I like to work on projects to maintain my sanity. It is something I do "for myself" even though the projects are often for the kids. I have been avidly knitting and crocheting for well over a year now. I recently took up sewing again. Knitting, as long as the pattern is simple, is something I can work on while I hang out with the kids. I use circular needles and follow them around. Sewing is a little harder. I doubt I will get into anything too complicated. I leave a half hour or so per night after the kids go to bed and pin or cut or sew. Yes, this is sometimes at the expense of chores. Oh well.

Baby shoes for Hannah:





Maya's hooded sweater:




Elephants:




Thursday, July 21, 2011

Emergency Plans

I have had a number of quiet panics over the past few months about what I would do with Sam in a real emergency. I started to worry about it when I broke my arm and had surgery this winter. Taking care of the kids on my own while pregnant with a broken arm was. . .interesting. The massive snow storms were dangerous. Now we are in a heat wave. I am thinking about that huge blackout years back. . .

What if we lost power and had to go to a cooling center or a shelter? What would I do with Sam? He does not have major medical needs but his behavioral issues would cause a disaster. He can't sit still for more than a few seconds. He would run and jump all over other people's stuff. He would grab their water bottles and tip them upside down. He would throw things everywhere and spit on people. We have no way to control him despite hours of consultation with behaviorists and therapists. He does not have the receptive language skills to understand why we need him to stop. He is ruled by hyperactivity and compulsion. Even holding him by the hand doesn't bring him down when he gets worked up.

So what would we do? Get in the car and drive until the power is back on? Drive to a state with power and find a cheap motel room and hope not to catch anything gross (I have a thing about hotels/motels)? I have no idea. This needs some thought.

Wednesday, July 13, 2011

Pillows



That green and tan thing is Sam's knee and his hand is right above it. He is chilling out for a bit since he got up long before the crack of dawn.

Sam has a thing for pillows. As soon as he started sleeping in a bed, he started putting pillow on his face as he went to sleep. It freaked me out and I used to move them as soon as he was out. He would just put them back as soon as he noticed. He also love the couch cushions and as soon as he was able he made a habit of knocking them off the couch and onto the floor.







At about age 4 he started dragging his bed pillows around the house and sitting with them downstairs. Becuase they tended to get dirty we designated two pillows as Sam's downstairs pillows. They stay downstairs and if the pillow cases get food, drink or other mess on them we don't care. When Sam sits at the table he often suqeezes a pillow between his lap and the table.







On the rare occasions when Sam is not moving and aggitated it is usually because he has sqeezed himself into a den of pillows (think Temple Grandin's squeeze machine).







Sometimes he gets obsessive about pillows. Every so often he wakes up feeling funky and upset. Those days he will wait at he gait making grumpy noises and holding all his bed pillows as well as his down comforter. If you try to make him leave those things in his room it will result in a full blown meltdown.







For a long time Sam would not sleep with any covers, even in the middle of winter. I put them on his bed anyway but he wouldn't use them. This past winter he realized that his down comforter is like a pillow. Now, even in the middle of summer he piles the whole thing in a jumbled mass on top of himself when he goes to bed.

Tuesday, July 12, 2011

Bloggers Beware

Many parents of special needs children have turned to the internet to find community. For some of us it is the only way to connect with other parents in similar situations. Our lives have been forever changed by Autism, Cerebral Palsy, Down's syndrome, Fragile X, childhood strokes, . . .the list could go on. Most of us can't just take a few hours to attend a support group so blog communication becomes our support. The appeal of meeting people who "get it" is huge. Unfortunately that need can cause people to let their guard down. When I work on research skills with my students, I stress the point that anyone can write anything on the internet. I can start a blog and call myself a Ralph Waldo Emerson scholar. I can write that his favorite food was peanut butter and that he played hopskotch as he formulated his transcendentalist philosophy. If you inculde that in your research paper you have made a great error. My hypothetical blog is not a peer reviewed edited publication. In the same way, someone can start a "special needs" blog and not actually be a person with any connection to the special needs community. Or, the person may have a family member with special needs but use the blog to pull on readers' heartstrings to get donations.

Why would someone do this? Well, why would someone steal savings from elderly people? Why would someone molest a child? Because some people suck. There are people out there whose brains lack a moral compass. There are also people out there who are complete narcissists. They need an audience, they believe their story ought to be on everyone's mind and they will do anything to make people sing their praises. SOme people are pathological liars. For example, I met a girl in college who faked 2 pregnancies (I am not kidding, it was intense).

On the internet you have to be as careful as you would be while walking around a strange city or strolling anywhere at night. You cannot assume that because someone claims something in a blog, it is true. You have to fact check and get to know the person before investing anything like money or personal information with that person. Your radar has to be on.

Recently a number of special needs parents were scammed. I was one of them. My previous post has a link to another blog. The comments page has words from many of the parents and from the man(?) himself.

I first heard about the ipad giveaway on another blog. I won't mention which because it doesn't matter. The entry was simple (if you don't frequent a lot of blogs, this is pretty standard). Just leave a comment or send an email. No information besides name/blog necessary and no money sent. I have done this before and on one blog, I won a beartiful handmade doll for Maya (with that entry I had legitimate reasons to trust the blogger because I first read her blog through a real, established agency). The contest blog is a blog about infantile spasms. The Dad writes about his experiences with his severely disabled daughter. Supposedly he has started a foundation for fundraising and awareness. He also raises money for her surgery (that is a whole other discussion).

I entered Sam. At this point I figured, no harm in entering but we probably won't win.

We made it through the first round. The second round simple involved having your therapist or doctor send a note confirming that your child has the disorder you claim and that your child could in fact benefit from an ipad. I am lucky enough to have a therapist (through Sam's IEP) that come to my house so she sent an email to the blogger. Again, we were not asked for money or anything that wasn't already stated on my own blog so I wasn't too suspicious. I still figured it was a long shot and I didn't count on it.

Soon we heard that all forty of the finalists had been selected because this man's "bosses", who love to help him fundraise but want to be anonymous, could not make up their minds. We were all getting ipads plus credit for apps. At that point my scam radar went up. These are hot items. Individuals can only buy limited numbers. Maybe cooporations have different buying options but the contest was not through his company. Plus credit for apps? If they have all this money why not just pay for the kid's care? I KNOW Apple didn't donate all this stuff to him. That would be all over the news.

I also noted that there was no non-profit number for his "foundation". As I said before, I can call my blog the Ralph Waldo Emerson Foundation. That doesn't make me legit.

Again, I didn't worry because I wasn't asked for money. I figured if it was a scam, so what?

We "winners" were stalled again and again while he waited for "legal paperwork" from his "lawyers". We got regular emails "updating" us on the progress of this endeavor as well as detailing his daughter's care and condition. All this took months.

Then the ipads shipped. Oh wait, only 7 of them made it. Oh wait maybe 20 of them made it. But no one who did the shipping used a checklist so the man had no idea whose had gone out. At this point I was 100% sure this was a scam. No person I can imagine would ship such valuable items in such a manner. He emailed us that it wasn't his fault because HE didn't handle the shipping - some people at his company far away did it. He was going to make it right for us.

I know many parents were suspicious at this point. Some of us began to contact each other quietly. I still figured it was probably not for real but what is the harm in just waiting to see?

The we got an email from the man saying he was getting "threats". He sent us a copy of the email.

This is his email which includes the "threat". I blacked out the man's (contest man) name for now. Otherwise this is the complete email:

I just got a very disturbing email from somebody anonymous on the internet. I've included it in it's entirety... I apologize for the language in it in advance.
----------
Hi Mr. _______,I know who you are, and I know what you're doing with regard to the iPad scam, and all the other scams in which you've participated. I have all of your contact information, employment information, as well as your criminal history. I have archived your entire blog. I have a file that is ready to be sent both to the Fairfax County DA and police department, to Apple, and to every single parent who thinks they will be receiving an iPad from you.Here is what you need to do if you want me to drop this issue without reporting you. I want you toa) announce on your blog that no one will be receiving an iPad. I don't care what story you make up as to why this has happened, just announce it.b) refund all the donations.c) stop accepting money.d) get the fuck off the internet, you crazy, disgusting bastard.You have one hour from now to make the announcement on your blog (NOT in private emails) or the file will be sent to all concerned parties.Looking forward to your update,Me
PS I have spoken with Apple's legal department, and they have no idea who you are.
----------
I don't know who sent this. I don't know what their motivation is. I'm just letting you know. I'm trying to engage whoever this is in a dialog to see why they'd want this.
If anybody wants the email directly forwarded, then I'll be happy to send it.
-_____




At this point we were told all shipping was on hold while police looked into this. Protecting his family was his primary concern. There were no threats to his family in that email. It was just another reason not to verify shipping. It all came to a head this weekend. One blogger brought up what many of us were thinking and as you can see in the link I listed in my previous post. The person (actually 2 people who sent the "threats" have revealed themselves and explained their actions here:https://sites.google.com/site/bustedyourbunny/

After many demands to prove that the ipads existed, the contest man gave in and admitted there were no ipads. He still tried to come out looking good. This is what he said:

There are no longer any iPads. I've never had access to the matching funds I've been promised. Something along the way changed and I'm getting hung out to dry by my bosses. As to my obliqueness about my bosses and the company I work for, If their identities ever got out, long ago they promised I'd lose my job, my insurance, and take us for everything we have making Marissa's surgery impossible to afford. If I keep my mouth shut and the fact that I got screwed never gets out in any way then I keep my job, and my insurance, and they've promised to pay for Marissa's surgery after we give everything we can. My reputation is now screwed with the SN community but I have to be able to give Marissa the best chance for as close to normal as possible and will happily work under whatever conditions I need to. I'll dance with the Devil if it gets Marissa what she needs. We're not going to fundraise any more. There won't be any more giveaways on Marissasbunny for special needs or otherwise. I'm still going to update with Marissa's surgical preps and that kind of thing, but that's all. Marissasbunny is going back to what it was before they got involved, back when many of you started reading. No more promotions, just Marissa and her brother's story. There are the first words that are my own and not through a corporate lawyer since Thursday. Regretfully,-_____

I suspect this is just another ploy for sympathy. If this man cared about his reputation in the SN community, he would not have put the dreams of so many on the line. I would not be surprised to find out this guy is using another name and site to fundraise in the next few years.

So what did he do that was so bad besides disappoint a bunch of struggling parents? I have said again and again that he didn't ask us for money. So what did people lose besides a little hope and faith? This man used the ipad givaway as a way to promote his fund for his foundation/his daughter's surgery. Some parents were so taken by his generosity that they gave to his fund. Other people who knew parents who were promised ipads gave money out of gratitude. Some people with no direct connection gave money because they thought he was a do-gooder. Also, some who didn't "win" in this round were encouraged to enter the next round which was a raffle. It required a small entry fee because according to him he was hit hard by legal fees for tje first givaway.

I had a lot of doubts throughout this process but in the bustle of everyday life with 3 kids and special needs, I didn't put a lot of thought into it. I wish I had really thought about what was going on and asked some questions sooner. Maybe if more of us had done that, people wouldn't have lost their money in the fundraising. I think we all owe SN Avenger a thank you for bringing this out into the open. Hopeful families would probably waited weeks more before calling this guy to the mat.


So bloggers and readers beware. If it seem too good to be true it probably is. If a group claims to be a foundation, there ought too be contact information and in most cases a non-profit number. If there is fundraising connected to the givaway, procede with caution. Some are legit but make sure you are are clear on where the money is going. If you win something that is worth more than a certain amount, there is paperwork you have to compelte for tax purposes.

Sunday, July 10, 2011

unrest in blogland

I was working on a post about this but I think it has all been said here:

http://www.lovethatmax.com/2011/07/mystery-of-missing-ipadsand-unrest-in.html

read the comments too

Yes, we were one of the "winners". Unlike some of the parents though I never counted on it. There was a part of me that hoped something that good could really happen but the realist (cynic) in me was pretty sure it wouldn't materialize. There were too many things that didn't add up, too many "perfect" promises. I figured that an entry was relatively safe since he didn't ask for any financial info. As they say, there is no such thing as a free lunch. Maybe in a few weeks we will all be surprised . . . what are the chances?

Monday, July 4, 2011

Siblings

In my self-absorbed state a couple of weeks ago, I was only worried about how I was going to get through the break between school and ESY. I can usually keep my temper in check and my sadness at bay for most of the day but by late afternoon I am at the end of my rope. listening to my books hit the floor, break apart and then get torn to shreds wears on me. Getiing spit on all day isn't fun either. In addition, at over four feet tall (and only 6 years old!!) Sam can reach most of the drawers and cabinets in the kitchen. He has smashed a number of things on the floor (luckily all plastic containers). I was not thinking about how all this would affect Maya. I have always assumed that until she starts school and has playdates, she won't really think to much about Sam's behavior - it will just be "Sam". I was wrong. She has had a tough week and I have seen her frustration grow. We have basically been housebound since Sam is very destructive in stores. With his impulse to push I am uncomfortable taking him to playgrounds where he might knock someone off the jungle gym. Some of her outbursts mimic mine and I am going to have to be better about yelling when I reach my limit, but some are clearly her anger at not being able to play normally without being spit on or having her toys snatched and thrown/broken. Her plastic toy bins have been smashed, her crayons have been chewed up and/or thrown, her books had to be locked away upstairs for bedtime only. WHen she tries to practive ballet in the living room she has to duck flying books and gobs of spit. I can't take her on playdates (not that we have friends nearby to go see) with Sam home so she is as isolated as I am.

I know when Sam is in school I will be playing catch up on work and cleaning I can't do when he is around. I decided last week that she needs something for herself. We got some respite funding to help pay for two weeks of day camp for Sam in August. We still have to contribute but the funding makes it easier and it allowed me to get a cheap program for Maya. The preschool she will attend this fall has a 3-day a week day camp in July. I didn't sign her up previously because I thought she was a bit young and I didn't think we could pay for it. I contacted them and explained the situation. They said they had a spot free for next week and for two weeks from now. they are book the week in between. I sent a check right away. It was way past the deadline but they were fine with it (I assume it is better for them to have all spots filled anyway). SO Maya is starting camp tomorrow and she is beyond excited. SHe will get to do arts and crafts and play with kids her own age. I think she will do brilliantly.

Friday, July 1, 2011

Swings

If we could just bottle whatever it is that swings do to Sam's brain I think he would be ok. When he is pushed on a swing his body is calm, his eyes look around at a normal pace, and he smiles in a relaxed and happy manner. He stops stimming completely.

Unfortunately, the effects do not last a second past the time he gets off the swing but it is sweet in the moment.

Saturday, June 25, 2011

Milk and Nice People

Yesterday afternoon, while I was helping Maya figure out a new game, Sam stole the carton of milk from the fridge and threw it around the living room. The rug was saturated and the piano had a big puddle on top.

As I cleaned up after dinner, Sam grabbed the salad spinner out of the sink and threw the leftover salad all over kitchen.

That was day one of the countdown until ESY begins for Sam. Come on, July 5th. .

On the positive side, neighbors have been calling me from various stores to see if I need anything. It is an amazingly helpful thing. Yesterday, a friend from work picked up bread and dish soap and this morning a neighbor brought over bagels. Since, when Mark is at work (6 days a week), I am homebound with the kiddos, I can't run out to get little thing like that when we need them.

Friday, June 24, 2011

New Therapist(s)

I am about to express my annoyance over new therapists. Please note thought at these therapists are lovely, dedicated, well-trained and well-intentioned women. I am just generally pissed off.

We are incorporating some new therpaists into Sam's home program. Why? Because I am Master of the IEP (yes, I have given myself an official title)Sam will get 8 hours a week of home therapy continous throughout the year (no breaks in the summer). This is in addition to his school and extended school year program. Will it make any difference? I hope so but I doubt it.

How did I get this many hours? I carefully wrote letters detailing the specific actions Sam engages in that create danger for himself and others. I also pointed out, in writing, that I was keeping anecdotal records of his behavior and making video tapes of Sam in our home. I also mentioned that I was considering private placements for Sam for which I expected the district to pony-up (considering all the documentation I have of his lack of skills developments and so on. . appropriate education environment. . )

The frustrating part about adding new people is that each person askes the same questions about Sam's behaviors. (what is you give him something appropriate to throw? so you make him clean up? have you tired an activity schedule? and on and on). Yes yes and #$@^#*& yes. We have been working at this home program for nearly three years with trained professionals and YES we have tried it. It doesn't work. Nothing works. He is stimming 90% of the time. He will not substitute something appropriate because part of the appeal is the loud thud and the way things break when they hit the floor. Making him "pick up" did not work in the classroom so why do they all think it will help at home? We make him do it because children should clean up after themselves but it has no effect on whether he will cover the floor with books a minute later. He will only follow an activity schedule if someone stands over him and enforces it. even then his limit is about 2 activities. He is capable of doing a puzzle or stringing beads but those activities hold no value for him so he will not do them unless forced. We do them anyway but after three years and no change in his interest or ability it seems like a waste.

So, while I am very happy to have these extra hours because maybe, just maybe they might help and they give me psychological and physical break (and those of you who know me know I am getting ready to add the psych hospital to my speed dial - for me or for Sam - who cares?), I am not convinced they will do much. The only suggestions a whole team including behaviorists, teachers and aides has given me are to make him clean up every 10-15 minutes and put him in his room (which is almost a "safe room" at this point since I had to remove almost everything from it). I made them promise out loud that they wouldn't call child services on me for shutting him in his room.

A number of people have asked why I don't just take the books away. After losing quite a few books I DID remove some books and box them up. I don't have anywhere to store those boxes right now so they are in the living room looking lovely. I also have another set of shelves in another room he hasn't gone after yet (although he is checking them out from time to time)and I moved some item there. The problem is, if I take the books away he will move on to the next thing. He is throwing the books because I took away the last thing he obsessively threw (blocks). Giving the blocks back, unfortunately did not reverse the habit. I know what he is considering for his next obsession: the picture frames. I could remove those too but then what? This is a compulsion that can't be blocked with the basic behavioral tools and I can't turn the house into a psych hospital. The girls deserve to be able to play. The big problem is that Sam has no other interests and no amount of ABA has been able to develop one in him.

The additional therapists are wonderful as I said before but I am already seeing looks of "holy crap" on their faces. They have reported back to their supervisor that Sam is one of the toughest cases they have seen. And while the validation that I am not crazy or doing something amazingly wrong is nice, it doesn't make me think that thing will improve any time soon.

On the plus side, due to generous support from family members who are hoping to keep me out of the psych hospital, Sam is probably going to day camp for two weeks in August.

Sunday, June 5, 2011

Sam Stimming



This is Sam stimming with books (the voice in the video is Maya who is a bit jealous because she wants to make a video too). He does this most of his waking hours when he is in the house. When he is out of the house he does the same action but with other objects. The resulting mess is maddening. The sound of books hitting the floor still makes me cringe. We make him "clean up" but it has no effect on the behavior.

Diet Romance

I have been flirting with the idea of putting Sam back on a gluten free diet. We are pretty confident Dairy free did nothing for him last time around. He doesn't like milk and only eat sheese and yogurt anyway. I think I am thinking about it because one of the books I have had to rescue from Sam is Special Diets for Special Kids. I didn't find it to helpful the first time we did "the diet" because Sam couldn't have eggs and many of the recipes called for eggs. He has been cleared by the allergist to eat eggs now so I might get more use out of it. I re-read her story at the beginning of the book and it sounds so similar to ours.

I bought a bunch of gluten free products at the store today and when I checked out and realized the cost I had second thoughts . . .

THose of you out there who are GF, what do you do for lunch? Sam has to bring lunch to school and I haven't found (or made) a decent GF bread. GF pasta doesn't re-heat well. I am at a loss (I have already read the TACA site).

I don't know if we are going to head down this read again or not but I am going to at least start introducing more GF foods into his diet this week to see what he tolerates.

Anyone out there with a success story?

Saturday, June 4, 2011

ups and downs

Ups

-We are having some success with medication (do I still need to give the usual speech about how I never imagined putting my child on meds like this. . .?). He takes a few but the one that has helped is Strattera. The neurologist said that it only seems to help about 50% of her patients who try it. It helps Sam mellow out a bit. Before Strattera he was so overstimulated and uncomfortable in his own skin then he was jumping up and down constantly, flapping wildly, vocalizing in a high pitched scream and running back and forth like a wild man. His behaviors are still difficult but the absolute frantic mode in which he used to operate has been brought down a notch. He is also sleeping better. Most of the time if he wakes up, I can take him to the bathroom and then put him back to bed. He still has 4 am mornings sometimes though.

-Sam will likely get a significant increase in his home support hours from the district at his next IEP meeting. I sent in a couple of carefully worded letters and documented, through notes and videos, Sam's dangerous behaviors.

-the baby is smiling and "chatting" with me every chance she gets.

downs

-Sam continues to obsessively destroy our books. He empties the shelves multple times a day and throws the books around the house. He has no alternate interests so diverting him is impossible. He sometimes take a break from throwing the books to chew them. The behaviorists are getting on my nerves because they keep offering suggestions that don't work. They say make him pick them up. We have been dealing with throwing for years and we have tried that. It doesn't work. It has NO effect on whether he will throw again. In the classroom they have determined that making him "pick up" doesn't work so why do the same group of people keep telling me to do that at home?

-Sam has done a few things lately that have hurt Maya. He has knocked her off a chair, pinched her arm until he left a mark, yanked her arms really hard and made her cry- to list a few. His concept of "other" is limited so he doesn't understand he might hurt her.

- I am feeling the effects of fatigue from the past few months. I cannot remember that last time I had more than 3-4 hours of sleep. It was hard to sleep during the 3rd trimester but with the addtion of the broken arm it became nearly impossible. Now the arm is getting better but I have a nursing baby who does not sleep through the night. Often both of the older children need to go to the bathroom during the night and they both need help. I went back to work when the baby was just about 7weeks old. It is too much. I feel stupid saying that considering what is going on in the world but I am just barely functioning. The combination of nursing all night, getting up at 5:15 to get all the lunches ready, get dressed, nurse again and get the girls out the door by 7, then teaching ( and trying not to leak milk in front of the students and trying to find time to pump), then coming home to manage Sam and various therapies and the house and to worry over Mark's massive financial issues that never seem to improve - too much. I am forgetting things, dropping things and by the time I put the kids to bed my vision is blurry. I am hoping that summer break brings some relief.

Monday, May 9, 2011

Haircuts

Like many children with Autism, Sam hates to have his haircut. It puts him on sensory overload. His school has done something brilliant (which is nice because on a few other issues I have a list of complaints). One of their former employees (I think she was a classroom aide) work in a hair salon. She comes to the school twice a month. Parents, for a small fee, can sign up for as many haircuts as they want their child to get. The children then get their haircut in school with their teachers and aides on hand. The new photo of Sam is with his hair freshly cut. One less thing to try to do around the house!

Tuesday, April 26, 2011

6

Today Sam turned 6. I still remember the insane strength of the bond I felt as soon as he was born. I think I actually felt physical pain when he was away from me. He was a mama'a boy through and through.

Today Sam woke up at 6. He was snuggly and sweet for a few minutes and so I told him it was his birthday even though he didn't understand. Then he started grabbing the books off the bookshelves and throwing them (his new obsession). Mark tried very hard not to yell and just made Sam clean up every few minutes. The cleaning up has no effect on the behavior but we do it anyway. Then Sam went to school without the cupcakes I wanted to send. I realized when we got home from his dance class that I didn't have enough eggs and I was too tired to go out so late. I am hoping to send them later this week. I couldn't bring them later in the day because it was my first day back at work since the baby came.

Sam got dropped off at the sitter's house and I picked him up at 3:30 with ice cream cake in the car. He seemed excited about that idea. He decided to start pinching Maya on the car ride home. I hope this is not his new obsession because I have no way to separate them and she doesn't deserve to be hurt every time we go out in the car.

Sam spent the rest of the afternoon throwing books and trying to play in the toilet. I spent the rest of the afternoon trying not to lose my temper and nursing the baby who didn't want to drink bottles while I was at work.

I wish for his birthday that I could transform into a better mom, someone who knows what to do about these dangerous behaviors and how to give us all a happier life. SO I am sorry, Sam. I hope that todays feels a little different for you in a good way so that even if you don't know it is your birthday, you know that you feel happy (even if it is just happy about ice cream cake).

Saturday, April 23, 2011

Bad Bad Bad

The other night, right after I brushed Sam's teeth, Sam leaned over and let go a glob of spit onto my slipper. THen he gave a little jump, flapped his hands, and said, "bad, bad, bad!" (which from Sam sounds like "ba, ba, ba"). Naughty boy.

Thursday, April 21, 2011

Finding Community

So my quest to find a church in order to feel commected to a community has been a big failure. The churches I have visited or contacted have all been very nice. The one I attended - a very small UCC church - was so welcoming I feel bad not going. The pastor is great and I still get his newletters by email. The problem is that no matter how badly they WANT to be a great place for a child like Sam, they just can't without disrupting the experience for everyone else. In most churches I have been to kids sit for part of the service then go to class or chapel. Sam can't do that. He can't participate in a class in real way. I could go to church on my own and I may from time to time but the community aspect just isnb't working. I can't join committees, go to choir practice, or help with the rummage sale. I just don't have the ability to work full time, take care of three children and manage Sam's issues AND do those things - especially with Mark working most Saturdays.

BUT I found a great community. Sam takes a special needs dance class at a nearby dance school. The other moms/grandmothers are a great bunch. There is one boy who is much like Sam, a little girl who is nonverbal and somewhat delayed, twins with Down's SYndrome, and a girl who is autistic/multiply disabled. There are other kids who come and go but the parents of this bunch are there on a regular basis and I really look forward to the hour I sit on the floor and chat with them. Sam has been a little off the class lately but I am pushing him to keep going mostly for my own sake!!

The only time I feel on the outside is when they start talking about vacations and special needs camps. I am the only one in the group who has to work full time and even with 2 incomes we don't make enough to take trips or send Sam to daycamp in AUgust. These other moms take trips and some even hire therapists to go with them so they get a break. whoa. I did get a lead on a reasonably priced special needs camp for AUgust but so far they haven't gotten back to me.

Monday, April 11, 2011

Spitting

Blogger won't let me write in paragraphs. Sam's most recent addition to his constant stim routine is spitting. He pools his saliva in his mouth then sticks out his tongue and lets it drop. Sometimes he then rubs the puddle with his foot and other times he lets it stay. He used to do this every so often but it wasn't enough to get worked up over. A couple of months ago his spitting began to increase in frequency. Now it is almost constant. He has also started blowing raspberries in my face when he leans in close. Lovely. The spitting bothers me but it bothers my husband even more. I don't think Sam knows what I mean when I say "no spit". Either that or it is so far beyond his control that he can't resist. Yelling about it is useless. His school has him on a behavior plan for it and they are seeing a reduction. I haven't seen any reduction at home. I have asked for suggestions for a home behavior plan but I am having even less luck getting home program support than before. Grrr.

Monday, April 4, 2011

Big Sister Present


This is the doll that Maya got when she became a big sister. This is where you can purchase your own custom doll:




Don't worry, we got some big brother stuff for Sam too but it was mostly chewies and I don't have a link for those!

Starting Fresh

One thing I work really hard to do with Sam is to avoid holding a grudge. Think about it - when we have fights or tough times with other adults, those incidents hang over us the next time we interact. We may respond with anger or sarcasm because the previous interaction is still in our minds. I can't do this with Sam. He is not thinking about the fact that five minutes ago he spit in my face when he comes and asks for a cookie for the hundredth time or when he throws a bunch of blocks. With Sam I think it is important to approach him with the right attitude each time. I try try try to keep my tone positive at the start of each interaction. Sam (like many typical kids) feeds off of negative attention. There is something about the adrenaline rush that often fuels him to repeat the things he is scolded for. So every morning and at every new interaction I try to remember to be glad to see him and to act as if he is going to be appropriate.I think that this is an important thing to do even with typical kids. Children are so much in the moment that to cloud our resposnes to them with previous negative feelings will just confuse them. I am not always successful with this but I try.

Friday, April 1, 2011

She said it best. . .

This post is a downer. I have some happier ones brewing in my head for another day. This post sums up a very lonely feeling: http://severedisabilitykid.blogspot.com/2011/03/to-be-cared-for.html I feel a little guilty comparing how I feel at times to the feelings of someone whose child is so medically fragile. Sam is physically healthy, it is his cognitive and behavioral issues that keep us (mostly me) isolated. The idea of being cared for is very powerful. It isn't that I want someone to wait on me or take care of all my needs- far from it. It is just that disability often take from you those moments of warmth and comfort that you get in those situations. It isn't about getting a massage or a spa day to "do something for myself". Those moments may be comforting but the provider is working for a fee. There is no real bond that is being nurtured there. One of my happy memories from before the days of Autism is sunday dinner with my parents before their divorce. Sunday dinner was often roasted chicken, roasted potatoes, peas and salad. In my house we were always expected to be present for dinner (unless there was something big going on). We almost always ate together at the table. We were not always happy with each other but there was something very warm and soothing about that meal - prepared by a mother. I can't go home anymore. A couple of years ago my parents seemed to change and then they divorced. Neither one has a house that is "Sam proof" so we can't visit. My roommate in college tried to re-create this for me one weekend. I had gone home to visit my parents for the weekend but I had to catch a train back to NYC before dinner on Sunday. I told her over the phone how sad I was to miss dinner and when I got back she had cooked the full meal! We sat together and ate dinner. Imagine that - that feeling of being cared for. To enjoy something quietly, warmly. Or imagine going over to a friend's house one day, turning the kids loose with a toy box and sitting down to catch up over coffee or tea stopping only to aid in the occassional kid dispute. Not wondering if your five year old is drinking the toilet water or eating the house plants. It would also be nice to provide more of these moments to friends and family. To be able to concentrate on her and be in the moment with her. I love being a mother. I even love being Sam's mother (though it may not always sound like it). I adore him even when I don't like the things he does (his most recent addition to his stims is spitting - really really gross). I enjoy the role of caretaker but I miss the moments that nurture other relationships. I don't know if this post clearly communicated what Claire's post made me think about. I hope it makes a little sense. And I agree that the shower is a great place to let it out. Let any tears go down the drain because letting them linger doesn't help anyone.

Monday, March 21, 2011

Baby

On March 9th, I went to the hospital with these.


After a very smooth delivery I had Hannah.


Sam pretty much ignores her except when he snatches a blanket off of her to throw. Maya likes her but she is emotional about everything else. She gets jealous when I am nursing.


Hannah is pretty easy going. She still feeds quite frequently and so she is up every 2-3 hours at night so Mark and I are pretty tired. In truth though, I feel better than before the delivery when I was pregnant, my arm wasn't healing quickly, and I had a major stomach bug that had me throwing up for days. Now I am recovering from delivery and tired but my arm is almost better, I can eat and when I do get a chance to sleep, I am more comfortable.


Thursday, March 3, 2011

Jealous Boy

I am very curious to see how Sam will do when this baby arrives. He reacted badly when Maya came home. He wasn't aggressive or mean to her, he just acted up a lot. Now he doesn't like to be without her. He is so much more behavioral now that I am not sure how much worse he can get (I may regret saying that)!

This has been on my mind because Maya and I got the bug Sam had a couple of weeks ago. We have been coughing and throwing up since Saturday. Both of us are finally on the mend today. Maya has needed a lot of extra attention. I never realized how independent Maya is normally. She is very cuddly in the morning and the evening and she often hugs me during the day but in between she plays and moves around without needing to be right next to me. Sam, who moves around the house like the Tazmanian Devil, checks in A LOT. He will often pull me to a chair or couch and either dive behind me or sit right up next to me for a moment. He missed out on this while Maya and I were ill. I noticed that the second Maya wasn't on my lap he tried to climb on himself (and he doesn't fit too well these days) or he tried to sit right near mefor a moment. He has also been a little more wired this week.

The plan is to induce this wednesday when Sam is in school. That way only his evenings will feel different. I am curious to hear how Mark handles the night wake ups while I am gone. Often he doesn't even hear them wake up. If that happens, it is likely whoever wakes first will wake the other by the time he figures out what is going on.


This should be interesting.

Thursday, February 24, 2011

Sam is finally getting over a monster of a cold. This is the second time this year he has had one like this - a week of coughing so hard he pukes. The other night he woke up in a puddle of vomit and then had to sleep with us with lovely smelling hair ( I tried to clean it but he was hysterical!!) Now Maya and I have the cold but we don't seem to be throwing up (keep your fingers crossed). So now I need the arm and the cold to get better before I have this baby . . . .please.


I just entered Sam in an ipad contest on this blog:

http://marissasbunny.com/


5 ipads are being given away so if you have a special needs child you might want to check it out.

Tuesday, February 22, 2011

The arm is healing although the process feels so slow. I got the stitches out on Tuesday (3 weeks after the surgery). I got a removable cast/brace that allows me to take a real shower. I can move my fingers and bear a TINY bit of weight on the (the weight of a few papers or a kid's plastic plate). I can't do much with the thumb yet. The surgery was just below the thumb so I guess that makes sense. I should be in this cast until the baby comes. At my appointment on tuesday the doctor asked me to come back in three weeks for an x-ray. I asked how flexible he was with that because I was planning to have a baby in 3 weeks. H said call when I deliver because they might be able to do the x-ray while I am in the hospital! That would save a lot of trouble.

I had a bit of a scare on Friday because it felt like I was going into labor. I was awake most of the night because of Sam and because I just felt strange. When I went to work I made sure to drink lots of water and I tried to eat but I had no appetite. I began cramping/contracting right as the day began. They were not too intense but strong enough to be uncomfortable. I had three hours of non-stop teaching first thing in the morning and then a 25 minute break. During those 25 minutes I told the main office I needed to leave. I organized work for my afternoon classes and left. I tried calling my doctor but they were "out to lunch" for an hour and a half. When I finally got the secretaries, they asked me to come in right away. The doctor checked me and I was only dilated a tiny bit so he din't think it was true labor. He told me to take a hot shower, lie down and drink half a glass of wine. I did n't have the wine because I was afraid I would fall asleep on the spot. By the next morning the cramps had died down and I began to feel normal again. Can you imagine a newborn, a 2 year old, and Sam. . .and me with only one working arm?

Sam has had a tough time with my injury. He doesn't understand that he can't grab my arm to lead me somewhere. He has also had to adjust to Dad dressing him after his bath. I am starting to be able to do it again but I don't mind keeping it as my husband's job for a while. Sam continues to have sleep issues despite Clonidine and melatonin ( it worked great for a while but like everything it seems to have stopped having the full effect). When he wakes he is less stimmy than off the meds but it still makes for tough nights.

One nice thing that came of this is that I got a lot of kindness from neighbors, friends, and people at work. Some cooked us dinner and others pooled money for a gift card to a local take out restaurant. My mom sent a package of frozen meals. One neighbor took Maya outside to play in the snow with her kids (which was a real treat for her since I can't even do that when I am healthy because Sam won't go). The first couple of days I had NO arm control and I had to get a neighbor to change Maya when she pooped.

On hard thing about all this though has been the "alone" factor. Mark just couldn't take off from work for financial reasons and I have basically been on my own with the kids (outside of work) six days a week. While it was hard to go out with Maya and Sam before, it is impossible now. I have been able to find ways to do most things one-handed but it is very difficult. If I thought I was tired before, it was nothing compared to now ( try sleeping with a 9-month pregnant belly and a broken arm). The night I had the surgery, we couldn't find anyone who could pick me up. Mark had to drag the kids out of bed at midnight and bring them to come get me. He waited outside the front doors until they wheeled me out. My mother and my sister have both made trips on Saturdays to help out for a few hours (I need help carrying laundry baskets around the house) which has been nice but I have been finding myself envious of people who live near family or who get to stay home with their kids and have the time to get to know other parents in the area.

One thing that made me very happy though was that I wasaqble to knit a few rows yesterday. It was slow work but it was a start. Since knitting is my only "thing" outside of work and kids, it has been tough not to have that distraction.

Saturday, February 12, 2011

A Perfect Storm

-Bad weather kills Mark's business
-the unsual financial issues
-8 (soon to be 9) months pregnant
-broken arm that has to heal from surgery
-most stressful time at my job (high stakes testing)
-Sam has stopped sleeping on a regular basis

So will our ship be lost?


On a slightly more positive note, Sam is giving Maya quite a sibling experience lately. He zeroes in on whatever she is playing with and either syeals it or knocks it over. Classic bratty brother.

Typing one handed stinks.

Saturday, January 29, 2011

broken bones





Maya's kimono sweater. I love how easy the pattern was and I think I will whip up another with some other yarn I have.







First pair of baby booties.












Second pair with a yarn I LOVE (Malabrigo 100% merino)













Matching hat



I also made an olive/burgundy baby blanket and I started a burgundy baby sweater.


I also have this lovely organic merino wool waiting to be knit.



But it may be a while before I can knit because I fell on some ice on Tuesday and I broke my left arm in 3 places. I spent the day and most of the night in the hospital having the baby checked and then getting surgery (awake with a nerve block b/c of pregnancy). I guess I am lucky it was my left arm since I can still do some things. The kids are freaked out and giving dad a very hard time when he has to do something I would usually do. Both are having a hard time sleeping. My arm should heal up by the time the baby is due. sigh.

Saturday, January 22, 2011

Big Kid Cup


Sam got this cup in his stocking this year. I decided it was important for him to have a more age appropriate cup to take to school or out in the community. It is not that I want to "hide" his autism, that is pretty much impossible due to the constant stims and noises, I just don't think he should use sippy cups forever. He CAN drink from a regular cup but he has to be very closely supervised. He is so stimmy with his hands that the cup often gets knocked over. Also, he has a bit of an obsession with how he "releases" objects. He doesn't place things down gently, he has to release quickly so that they fall a little - not always good with an open cup. Sport water bottles are not good because he loves to let those drop as well and they make a bog mess. He gets a kick out of water dripping on the floor or on himself. This cup has been almost perfect. It doesn't leak in his bag and it doesn't leak when he "drops" it. He figured out the bite valve with no trouble. It is age appropriate (I have one myself but it doesn't have the cool pictures on it). The only issues with it is that, as with everything, Sam had figured out how to stim with it. He holds the spout/bite valve with his teeth and walks around flapping his arms and making his stimmy noise. I take the cup aways as soon as he starts that so hopefully we can defeat this behavior before he ruins the spout. Overall, this big kid cup was a great buy.

Thursday, January 13, 2011

A note from the teacher

I got this email from Sam's teacher today:

Hello
I just wanted to reach out to you and tell you how well Sam has been doing lately. He recently has shown an interest in two of his peers (_______ and _______). He will get in their face and smile or he will pull on their shirt. It's very cute! After he gets a reaction from them, he has a big smile on his face.
Have a great day!!



This fits with what Sam seems to have been trying with his sister as well. I also caught him looking over at his babysitter's son the other day and flapping his hands like he was excited. He saw the son playing with a friend and he looked like this tiny little part of him deep down inside wanted to join in but he had no idea what to do.

Sunday, January 9, 2011

Moments of Normal

Every so often it is possible to look at what is going on in our house and not notice anything about Autism. Sam has recently figured out how to play chase with his little sister. Unfortunately the way her asks her is to walk up to her, pinch her and run away but it often does the trick and the two of them circle the house in a chorus of laugher. Sam has also started to realize that he can chase Maya too (much to her delight). He doesn't like the game as much that way but with a little nudge from me, he can sometimes be persuaded. Add dad to the mix and both kids are in total ecstasy. They both get to run away and to be tickled. Maya insists that dad yell "yar!" as he chases them (she associates this sound with dinosaurs and pirates). There is very little else they would choose over this game. When they are running and laughing together, you hardly notice Sam isn't really using any clear language. It is all squeals and laughs from everyone involved.

Tuesday, January 4, 2011

The new trampoline was a hit. I got an adult "jogging" trampoline this time which will be much harder to break.


Christmas was horrible - really one of the worst days in a very long time. Sam frantically stimmed all day long and destroyed books after book. He seemed distressed at his inability to stop but he just couldn't turn off. Eventually I packed the books all away upstairs in Maya's room. Her room has a gate we have to keep closed so Sam can't get at them. I am going to have to try to figure out ways to steal a few minutes alone with Maya to read from time to time.


The rest of the week was better. I was off of work and Sam and Maya were home with me. With the help of increases in meds, Sam was able to relax a little and he seemed a bit happier. I a relunctant to say the meds are working because it seems that as soon as I draw a conclusion about something, Sam's brain regresses back and I have to re-evaluate. He has had a good week at school so far so that is nice.




I am starting to get some of the fun symptoms of a pregnancy in the third trimester. I am tired most of the time (although I guess I am lucky the fatigue really didn't kick in until now. Previous tired spells for me were clearly linked to sleep problems with the kids). My hips bones ACHE. THe ache makes it tough to sleep and tough to get comfortable during the day. I consider myself lucky that I haven't gained a ton of weight in any of my pregnancies so while my belly feel big, the rest of me hasn't blown up too much and I can still get around well. I also have never had trouble with leg or foot swelling.




I am shocked sometimes to realize how close I am to having three children. I feel like I have barely had time to think about this pregnancy. I didn;t find out the gender this time. People ask if I am curious but I haven't spent a lot of time thinking about it. I don't want it to sound like I don't care, I just mean that it hasn't been something I have obsessed over because I have been too busy. For months Maya insisted she was having a sister "like Maya". But now she is demanding a brother.