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internet went down again
me
jynxgirl
My internet seems to have gone down. I will get back to posting as soon as I can!!!

Post from mobile portal m.livejournal.com

The World Lightens.
me
jynxgirl
Earlier this year, Alena came to the top the waiting list for her therapy. With that would come lots of appointments and chaos, but the kind I have dreamt of for four years!

She started on April 20th, and I am super excited to see the changes it's going to bring in our lives. She's already learning to ask for the things she wants by name. It's amazing. Instead of just shouting or climbing my counters to get treats from the cupboards, she's asking for movies, or cookies or an apple.

I love the set up the program has for her. She's being eased into a full time schedule, and that has been a bit confusing just now at the start. We're also coming up on a week long shut down, which will have her back at the school full time. She goes to school on the half days when she doesn't have therapy. In two weeks (off the top of my head without looking...) she will be at full time hours. This will mean she'll only be at the school for a half day out of every week.

Alena seems to love this therapy, as it's not only getting her the things she wants without frustration on both of our parts, but it is also lots of fun for her right now. I know it'll get harder soon, but I'm enjoying the reprieve myself.

P.S. I discovered how to fix the posts so they're not all jumbled like they have been. I'll go back and fix them later tonight.

Fighting the System.
me
jynxgirl

Whenyou have a child with a disability of any type, you need to beprepared to fight for what your child needs. This can seem like anoverwhelming task at times, but find your center and stick to yourguns.


WithAlena, schooling was our fight. Not that they didn't want to takeher, but that they seemed to be more focused on the things she wasn'tyet ready for. Like toileting and reading and dressing skills.


Thefighting with the school started over her illnesses. Alena's neverbeen a healthy kid. From the day she was born, she had problems. Shestopped breathing a few times, was on a respirator for a while aftera hole was popped in her lungs and then we struggled with sleep apneaand reflux through her first year.


Atone she started having seizures. By 18 months, I knew she had autism.The internet was helpful for me figuring out what to do for her. Thefights started then. First with her doctors who kept chalking thedelays up to her being premature, and then with services who wouldn'tsee her without a doctor's reccomendation.

Thefighting with the school is ongoing, and it will probably never end.They want their goals met, and I want my daughter to have as normal alife as possible. In a word, therapy given to her.


A brief interlude.
me
jynxgirl

I am making this a quick post, because I'm quickly finding it hard to write.


Knowing that thisis real life stuff might actually help you understand where I'mcoming from. I'm posting about actual experiences with my actualchild. Nothing is being censored or screened. It's just honest togoodness truth about living with a child with autism.


This isn't somebullshit, made-up, plea. This is my life being displayed for betterunderstanding of where I'm coming from and where other parents arecoming from. I'm of the belief that if you are honest with people,they're going to have a better understanding and be able to eitherhelp or hinder your life as they choose.


So pleaseunderstand that these posts are a lot of personal life being draggedup from the bottom of my heart and laid out for you all to read.Judge me how you will on my beliefs or my parenting skills, but thisis real life, not some chintzy Hollywood portrayal of life with achild with autism.


Adjusting to Life.
me
jynxgirl


There are a lot of changes that happenin a short amount of time when your child has autism. Quickly, lifeseems to turn upside down.


At first, things didn't seem to move atall, but then they seemed to move all too fast. This was a cyclicthing that I really had to struggle to get used to. One minute wewere trying something new, but the next we were in a loop of nothingnew, and nothing that worked


I tried PECS with Alena. I printed themup myself, laminated and cut them out and tried to organize them.Somewhere in my apartment, there is a whole grocery bag of 2”laminated cards in a binder with a schedule I'd made for her. Iworked for weeks on getting her to use them to no avail.


Then we worked with some RDI andFloortime programs I had seen . Those helped slightly, but I didn'thave the money to get all the materials they reccomended. (10 beanbag chairs?? I managed to buy one and it was almost $50!)


It was during the summer between juniorand senior kindergarten that things started to change for the better.My older sister sent me information about Signing Time, a signlanguage program that talked about helping children with autism andother disabilities. I tried it, thinking that at best she would havea new television show to enjoy other than Dora the Explorer.


I was wrong. At best was far beyond myexpectations! Alena started to sign at me. Then with me! She evencalled me mommy for the first time! Imagine my shock when afteralmost 5 years of nothing but babbling and screams, my daughter coulduse words to get her point across!


With the onset of signing, came speech!Alena rapidly went from being silent, to talking all the time. Shewould memorize entire scripts from her favorite shows. She would askfor things using lines from Dora or Signing Time. The benefit of signwas amazing to me!


And soon, Signing Time would become avery large part of our lives.


Running Away
me
jynxgirl

Alena likes to get out of the house.It's something she's not only adept at, but very capable of. She canbe silent when she wants to be, and it makes it easier for her to getout of the house when I'm distracted.


Despite having a deadbolt, a slide lockand a window alarm on my front door, Alena has managed to escape moretimes than I care to count.


The first time was before the alarm. Itwas added right after this adventure.


I was in my room, and she got out. WhenI realized she was gone, I thought she'd headed to the common's roomin our co-op, which is right downstairs from us. I wasn't reallyworried at this point, because I figured she was still in thebuilding.


When I got down the stairs however, Istarted to freak out. No one had seen her.


My next thought was that she'd headedtowards her soon to be school. We'd been there just a few days beforethis to check out her kindergarten room and meet her teacher. She wasin love with the space, and kept going up to the doors when I tookher to the school fields to play in the grass or on the swings.


While the people who live in this co-opwith me were tearing up the grounds looking for her, I ran to theschool, which is about a ten minute walk from our front door. Imanaged to keep it together until I realized she wasn't at theschool. The whole walk back from the school I was in tears. I made itto the house before hysteria set in.


One of my neighbors, who is one of thesweetest men I know, held me while I screamed. (I don't actuallyremember screaming, but I've been told I was pretty out of it by thispoint and it's quite likely I was...) A few minutes after I made itback to the apartment, word came down that Alena had been found atthe plaza just behind our house.


She had somehow managed to pass anentire contigent of OPP officers giving a boating demonstration andinto the grocery store at the other end of the mall. There she tookoff her dress and her diaper and sat down in the produce section,eating apples and chattering at anyone who came near her.


When mall security tried to pick herup, Alena started screaming and running away from him. Try to imaginea butt naked child, running away from a mall security guard with halfeaten apples in both of her hands! The thought still cracks me up,though at the time I was more terrified than ever about my daughter'ssafety.


One of our other neighbors uses amotorized wheelchair, and had been known to Alena for about a month.She just happened to have gone to the mall looking for Alena and sawher running. She called Alena's name and Alena went right to her,hoping for a ride on her lap.


This kind woman explained to police andthe security guards what I would have been unable to at the time.That Alena had special needs and she would take her right home to hermother. She redressed my daughter in her dress, and started herjourney back to the apartments.


When I got Alena in my arms, I startedcrying all over again. The police were happy the situation had a goodending, and in turn, I was happy that my little girl was not onlysafe, but also had so many people looking out for her.


Now that I know she likes to escape, Ihave contingency plans in place. I have explained to the policedepartment about her special needs, and I make sure that there isalways an up to date picture of her on hand, as well as lists of hermedications, height, weight and the clothes she's wearing. I make ita point to check them every day so I can tell people at the drop of ahat.


These things are vital to any child'ssurvival should they disappear, but even more so to a non-verbalchild who disappears.


Anger, Bargaining, Depression
me
jynxgirl

If you haven't noticed, I'm talkingabout the stages of grieving a person is said to go through during atime of loss or grief. I think that in a lot of ways, when your childis diagnosed with a disability of any kind, parents go through thiskind of grieving, not because of the disability, but of the life thatthey're leaving behind.


I was young when my daughter was born,and young when she was diagnosed with autism. I wasn't just losingout on all of the cool kid things a parent looks forward to, but Iwas losing out on my own young adult years as well.


I spent a lot of time stuck in betweenanger and depression. The largest amount of bargaining I did was withsocial services, trying to get them to see that our life wasn't yourtypical one, and they couldn't possibly apply the ame standards to usas they did to everyone else. (I was wrong on this one apparently.)


Time was a blur to me. Days driftedinto weeks and weeks into months. Before I knew it, Alena wasstartng kindergarten. It was tehre that I learned how bad thingswould get before they would ever get better.


Her teacher really didn't seem to likeher, or me, but she had an amazing Educational Assistant. This wasthe year Alena seemed to always be either sick or getting over beingsick. She missed a lot of school in her junior kindergarten year.She'd miss even more in her senior kindergarten year.


The school system got things even morefrustrating for me when they started outlining what would andwouldn't be happening with Alena. Her academic year sounded more likea year of free babysitting more than anything else. I wanted my childto learn the same things as other children. I knew she was smart, Iwanted everyone else to know it too.


As things got more complicated, I foundmyself seeming to lose days. Not like alien abductions or anythinglike that. But I would wake up, and suddenly find it was almost noon,or that Alena needed to be picked up from school before I'd evenstarted anything with the housework that always seemed to need doing.


Though one day will always stick out inmy mind. I was in my bedroom of our new apartment, trying to getthings more organized, when I realized I couldn't hear Alena anymore. I tried looking everywhere in the apartment for her, but shewas no where to be found. She had escaped the house.


Acceptance
me
jynxgirl

Within a month of Alena's diagnosis,things had gotten to a point where I needed to come to terms withthings. I couldn't ignore the world anymore. I had a child to raise,and friends to spend time with, not to mention the start of Alena'stherapies.


Or so I thought.


What turned out to be nothing more thansmall blocks of assessments, there was minimal therapy involved.Mostly I was taught how to teach her certain things, like how to talkand how to teach her to use scissors or crayons.



I was furious. All of the information Ihad been given stated that the sooner therapy was started, the betterthe child with autism would do, but I was immediately told thattherapy wouldn't start, possibly for years.


Alena was put on the waitlist as soonas we'd suspected that she might have autism. It would be a longwait, though at the time, I had no idea how long or frustrating itwould become. So I read what I could, and I researched what I could.


I got my hands on books through thelibrary, and was angered by what I found. I purchased newer books anddid everything I could to teach my daughter anything.


By three and a half, we were stillworking on basic skills, like talking or feeding herself. I hadn'teven thought about starting potty training, because I knew that shejust wasn't going to be ready. She couldn't yet undress herself, anddidn't have the verbal skills to be able to tell me if she had to goto the bathroom.


Alena nad I moved twice in the timebetween her diagnosis and her fourth birthday. In that time I wentthrough a lot of my own troubles. Depression had settled in, and Iwas unwilling to deal with it. Things spun wildly out of control andone weekend, Alena climbed out of our kitchen window and fell down aflight of stairs. This happened two days after I had miscarried.


She was alright, minus the broken arm,but I was not. I had nearly lost my child, and I couldn't even startto believe what would have happened then.


We were told that we had to move to asafer apartment that would better be able to contain Alena. Thusbegan a frantic search, as I was given two weeks to find a newapartment.


The diagnosis
me
jynxgirl

The diagnosis


When my daughter was just a day beforeher third birthday, we visited with her pediatrician for a formaltest to determine if she had autism.


While my ex-husband sat behind the oneway glass, I sat on the floor of a small room with a table and somechairs.


The doctor and another woman, who, Ilater found out, was the occupational therapist of the centre, triedover and over to get my daughter to engage in various types of play.I had a hard time focussing, but was being shot rapid-fire questionsabout her behaviours at home.


Before I knew it, I was handed my kiddoand asked to wait in the waiting room. Her father and I waitedsilently. It seemed like forever, watching her climb on the waitingroom jungle gym whole we waited for the doctor to come back and tellus what we had already suspected for over a year.


When she came back, instead of takingus to the office to talk, she locked the door to the waiting room,and told us that our daughter has autism. Despite being prepared forthis, my heart felt like it dropped through the floor.


She asked if we had any questions, andhonestly, I couldn't think of anything other than the words she'dsaid. “Your daughter is severely autistic. The test scores are verylow.” Her dad asked a few questions of the doctor, but started toexplode with questions for me on the walk home.


When Alena and I were most of the wayhome, I got a phone call from the occupational therapist aboutstarting some therapies. I was in such a numb state that I barelyheard her.


The weekend went on like every otherday. We held Alena's birthday party, and then she and I went backhome. I started out washing dishes, then found myself sittingvacantly staring at the television. I'd try to read or crochet, thenI'd find myself in my bedroom laying down beside my sleepingdaughter.


It felt as thought the world hadstopped.


But, the world does go on.




And it begins!!
me
jynxgirl
I am now in the chat room that I will occupy for the next 24 hours. You can all come join me to cheer me on, or even just come to read when posts are being put up.

http://client14.addonchat.com/sc.php?id=454866

Can't wait to get started!