IEP & Making progress in school

About a month ago, Chris and I sat down with Edwards teaching team to finalize his IEP (Individualized Learning Plan).   I don't remember too  much about the meeting because I was focusing so much on Serenity making a mess with crackers and french fries, and also everything they were telling us that Edward is behind on.  The one thing I do remember though, that kind of upset me, is that they mentioned the possibility of holding Edward back from first grade at the end of the year.  He was behind the other kids at the end of the year because he never got to go to Pre-k like everyone else did, and because of it, he's been going to Kindergarten in the morning, and Pre-k in the afternoon.  It's kind of cool because he's basically doing two grades at a time.  The hope in doing this is that Edward will learn the social skills that he lacks, and be able to catch up to where the other kids are at.  Right now, I feel like he's probably completely caught up, but we'll see what the teachers have to say about it. I REALLY worry about him being held back a year, and having to redo kindergarten next year, because it's not something that I want.  I know it's perfectly normal, and has been really beneficial for other kids in the past, but it's just not something that I can accept.

My entire life, my mother and siblings have always referred to me as the dumb, fat, ugly, stupid, no good, worthless, child. Not a single one of my 3 siblings likes me, nor does my mother.  And because of it, none of them have any relationship with my children.  They all know that both my kids are autistic, but that's it.  No one ever calls, or texts me.  No one checks on my kids, sends gifts, etc.  Not a single one of them care.  To my "mother" and siblings, my kids don't exist and are therefore the same "failure" that they think I am.  No matter how well I've done for myself, or how much I've bent over backwards to help out, and to do nice things for them, I've never been good enough.  Having a 4.0 GPA during my senior year of high school wasn't good enough.  Always having a full-time job from age 16 on, while still going to school full time, and keeping my grades up, wasn't good enough. Being entirely self supporting from age 16 on, was never good enough.  They've always treated me horribly, picked on me, and called me horrible things to my face.  To this day, they still do.  And a lot of it, they've begun doing to my kids as well.  It's really hard for any parent to accept that their child has a disability, but it's been even harder for me because of my "family".

I haven't told very many people that Edward is in both Kindergarten and Pre-k this year. The last thing I need, is to hear my "family" start insulting my son, calling him horrible names, and making him feel completely worthless.  I don't need to hear their nonsense, and my five year old doesn't deserve their nastiness at all.  He's 5, and he's autistic.  Subjecting him to horribly mean people isn't right, and I refuse to do it.  I might not be able to do it forever, but for right now, while my kids are still little, they have absolutely nothing to do with my "family".  When they are older, and I feel like they are able to make informed decisions, my kids can choose for themselves, who to have a relationship with.  But the fact that my "mother" and siblings make absolutely zero effort to even remember that my kids exist makes me feel pretty confidant that my kids will be safe from their drama for a very long time.  They don't call, come to visit, text, nothing.  My "family" has no idea the extent of my kids' autism, or the challenges that they face, and I plan to keep it that way for as long as possible.  My "mother" and younger sister have already said horrible things to me about my kids after finding out that they were diagnosed with autism, and none of them have even seen my kids in years.  My mother has only met Edward 3 times in his life, and Serenity just once.  It's pathetic!  They have absolutely no right to ever comment anything about my children, yet they do.  But considering that they know absolutely nothing about me, and walk around telling anyone that will listen, all about how horrible I am, there is no doubt in my mind that they say the same things about my kids.  They aren't good people at all, and I know for a fact that if they knew that Edward is in both Kindergarten and Pre-k, I'd constantly be hearing about how "stupid" and "worthless" my son is. And heaven forbid Edward be held back at the end of the year . . . I just can't handle that nightmare. My younger sister is a kindergarten teacher, with a "degree" in "special education", yet she knows absolutely NOTHING about Autism, and loves to tell me what horrible, misbehaved terror children I am raising, and how I'm a terrible mother, blah blah blah.  I seriously baffles me how hateful some people can be, especially "family". But that is just the way those people are, and there is nothing that I can do to change it.  And trust me, I've tried!

Edward's progress report came home today, and I am very proud of him.  My close friends and extended family have all noticed a HUGE change in Edward since he started school a few months ago, and he continues to grow and learn every single day.  Before he turned 2, Edward knew the alphabet, could identify most shapes, and could count to 20.  Before starting school he could count to 40 or 50, and identify all shapes and letters. Unfortunately, Edward is super shy, and doesn't like to participate in an environment that he isn't comfortable with, so he refused to participate in the tests that his teachers were trying to do, to determine his skill set.  It drove me crazy because I know how smart Edward is, and I kept telling his teachers that he knew the stuff, but he needed to be able to prove it to them, and Edward just wasn't interested in participating.  Instead, he completely withdrew, and would crawl under the tables in his classroom, trying to hide, or lay down on the floor, and hide his face.  It made me really sad, and I almost wanted to go sit at school with him, and let him sit on my lap, just so I could help him through the day.  Edward wasn't able to sit still when he was supposed to, wasn't able to join the class for carpet time, without messing around, and wasn't interested in socializing with the other kids. Plus, we had been working to potty train him for over a month (because he's completely refused for the last several years, every time we've tried), and was having a really hard time with it because he refused to use the bathroom on his own, and screamed bloody murder, throwing a massive fit every time Chris and I told him to go use the bathroom.  Edward was put into Pre-k to work on those skills, and I want to say that he's mastered them.  I absolutely love Edward's Pre-k teacher, but I'm just about ready to ask if he can go back to being in Kindergarten full-time.  I feel like Edward is ready.  He's clearly making progress, he can count to 100 and brags about it, which most kids his age can't do. Part of me wants Edward's teachers to come to me, and tell me that they want to move him back to Kindergarten full-time, but the other part of me doesn't think that they'll even consider doing it unless I ask.  I'm not quite sure what to do, but judging by the progress report that came home today, I think he's ready. Today was the last day of school before Thanksgiving, so I'll be thinking about what to do over the next 9 days, then approaching the subject with the school from there.

In other news, I had a meeting with Edward's pre-k teacher the other day, as well as Serenity's Early Intervention care coordinator, and I signed the paperwork to transfer Serenity's care to the school system and soon as she turns 3 in February.  She will have the same pre-k teacher as Edward, only she will go to school in the morning, and I'll be picking her up at the time Edward switches classes.  Right now, Serenity is receiving in home Speech Therapy, twice a month for 30 minutes, and she'll be starting Occupational Therapy, also in home, on Monday, which she'll get twice a month for an hour.  I love that Serenity's therapists will come to us.  It makes things so much easier for me.  I don't have to fight Serenity to get her dressed, and in the car to go somewhere, and she is much more comfortable being home, in her own environment.  The day we met her new speech therapist, Serenity was excited to see her walk in the door with a bag of toys to play with, and was more than happy to sit there playing with her.  Normally, Serenity is like Edward and will shut down and hide from new people, but I guess it's different when she's in her safe space at home.  It will be interesting to see what happens when she switches to the school system in February, but Edward's Pre-k teacher is amazing, and the sweetest lady in the world.  It's literally like having Grandma around.  Or at least that's how I feel about her. As much as I am looking forward to Serenity starting school, I'm also dreading it.  Serenity is my baby, and I am just not ready for her to be so grown up, and start doing big girl things. Part of me wants to keep her little forever, even though I know how completely ridiculous and impossible that is.  Serenity is growing up, whether I like it or not.  Right now, her biggest thing is not wanting to wear a diaper anymore.  Chris and I don't think that Serenity is necessarily ready to be potty trained, because we don't think that she is capable of telling us when she needs to use the bathroom, but right now, she's changing her own diaper several times a day.  Every time she wets, she changes herself. And if she has a bowl movement, you had better get to it before Serenity does, or it will likely end up all over the floor, the walls, and spread over Serenity's entire body.  She's kind of disgusting.  All of that is supposed to be a sign of being ready to potty train, so this next week will be spent attempting to teach Serenity to use the bathroom.  I'm sure things are about to get very interesting in our house for a while.

Here is a copy of Edward's IEP, and also the progress report that came home today.  I just realized that I failed to take a picture of his report card when it came home a few weeks ago, but that's ok.  I am super proud of my little boy, and everything that he has accomplished.  He is a completely different kid than he was when he first started school.  He's hard a tough year with us moving, and leaving behind his awesome therapy office, all his friends, and the only home he's ever known. He's basically started his life all over again in a new state, but he's thriving now, and I couldn't be happier.

I hope everyone has a wonderful Thanksgiving holiday, and I'll probably post again next week.  Please leave me comments if you would like to, and if there is anything that you would like to see or hear about, or if there is something that you are concerned over, or of course if you have any questions, please feel free to drop them in the comments, and I will definitely include them in future posts.

 

A very different kind of Halloween

I've always looked forward to Halloween, my entire life.  I guess I'm a junk food junkie, because any time you can get candy for free, I'm totally up for it! Even when I was too old to trick or treat, I would find some little kids to go with.  When I turned 18, and had my own car, I still went Trick Or Treating.  Only, I went to my grandparents house, where I knew they wouldn't laugh at me, and would still give me candy.  A year or so later I found out that even though their neighborhood was packed with trick or treaters when we were little kids, and Grandma would take us out, they hadn't had any kids come to their house in years, and the candy they bought was actually for me.  Every year they knew that I would be the one coming, so they bought candy just for me.  And they LOVED doing it! I even got a phone call one year making sure I was coming, because they were at the store buying me candy.  My grandparents were amazing, and I miss them so much!  I know that if they were still alive today, and I didn't live an entire country away from them, they would be buying my kids their own candy, and be super excited to have their own special trick or treaters, every single year.

Even after I moved away from home, I've still managed to go Trick Or Treating every year.  I'm one of the oldest grand kids in my family, and I've eagerly volunteered to take the younger kids trick or treating every year.  My aunts and uncles love it!  They no longer have to trek around the neighborhood with their kids, getting exhausted while their kids run around hyped up on sugar.  Instead, they can pawn their kids off on me for the night, and I'll bring them back with bags of candy, which I'll then take my "parent tax" from, before leaving to go back to my own house.  I'm the best "big cousin" in the world! For those who haven't heard of the "parent tax", it's the candy you earned the right to confiscate from your children by taking them out to get candy for hours on end.  Plus, I had the rule for my younger cousins that they had to walk, no running, they had to stay out of people's yards and on the walkways, AND they had to say Thank You at each house.  If at any time the kids didn't follow all the rules, I got their candy from the house they "messed up" at. After the fist year, of taking my cousins out, I was getting less candy from them breaking the rules, but they learned that I was going to take my share of their loot via the parent tax, so they were happy to give me their bags so I could take my favorite candy, and then go away so they could devour the rest.  I have to admit, I raised those little turkeys really well!

Now, as a parent myself, things aren't too different, except that my kids are autistic, and Halloween is pretty different than it was for me in the past.  When Edward was younger, I would dress him up, and take him to as many Halloween events as I could.  I was the mother who took her 3 month old baby Trick Or Treating.  Although, I did have my younger cousins with me that year, too.  I love candy, and any excuse to not have to pay for junk food myself, if a good enough excuse for me to go load up.  I'm a kid at heart, and when it comes to Halloween, I refuse to grow up!  But then things changed a couple years ago.  When Edward was 2, he wasn't interested in wearing a costume.  At the time, he was completely obsessed with the movie Frozen, and loved the character of Olaf, so I ordered him an Olaf costumer from Amazon.  Edward refused to put the costume on, and screamed bloody murder when I tried to dress him. He's done the same thing ever since.  Edward loves candy, and gets super excite to decorate the house, but he doesn't want to wear a costume.  He'll cry and beg me to buy him a costume every year, and act super excited about Halloween, but then when it comes time to put the costume on, he refuses.  This year, I tried for days to get Edward to wear his Mario costume.  I had every intention of taking my kids to every Halloween event in town.  Edward didn't want to go, and threw a fit every time I tried.  I'm still pretty bummed about it, but every year I hope that maybe next year things will be different.  Maybe next year, Edward will be more excited for Halloween, and then we can go to a ton of events. He's only 5, so maybe next year?

Serenity is completely different.  Serenity has no cares in the world most of the time.  She's happy to wear anything that you give her.  She'll go through 5+ outfits a day if you'll let her, and it makes for a ton of laundry for me. Serenity was thrilled to put on her Minnie Mouse costume, and go get free candy.  She couldn't wait to go Trick Or Treating!  I just wish Edward could be as excited.  Luckily for me, this year was much easier than last.  Even though Edward refused to wear the Mario costume he insisted that I buy him, he argued with me a little bit, but then happily put on his Mario pajamas (which are actually completely identical to his costume), and was super ready to go Trick Or Treating, but got angry that we had to wait for Daddy to get home from work, and Daddy was running later than I had instructed him to.

Other than when Edward was 2, we've always gone Trick Or Treating as a family.  We do everything as a family. For the last couple years, the kids have been reluctant to talk at the first few houses, and it's meant that Chris and I have to knock and say "Trick Or Treat" and "Thank you", but after the first few houses, the kids catch on, and are thrilled to do the talking themselves. Edward was diagnosed as Autistic, non verbal when he was first diagnosed.  He would only talk to us, sporadically.  But now that he's been getting speech therapy for the past couple years, it's rare for him to not be jabbering about something.  He's extremely quiet around strangers, but once he gets to know you, he never shuts up. Serenity is different though.  She was diagnosed as non verbal, and has yet to progress very much. She's two years younger than Edward, and was diagnosed at a much younger age, so we know that her leap of progress is coming, but it hasn't happened yet.  She's speaking more now than she was a year ago at her diagnosis date, but it's definitely no where near as much as other kids her age.  We only understand maybe 20% of what Serenity says, but that's ok, because she's still little and learning. Not everyone progresses at the same rate, and that's perfectly ok.  Serenity will get there. Both Edward and Serenity are polar opposites of each other.  They are both autistic, and while Edward is no longer non verbal, Serenity still technically fits the diagnosis. As I am typing this, Edward is standing next to me with his tablet, singing his ABCs. Serenity on the other hand, is walking around playing with her toys, and watching Mickey Mouse Clubhouse.  Every few minutes, she'll go stand next to Edward and watch what he's doing, before going back to doing her own thing.  Serenity knows the ABC song, but you can only understand parts of if while she sings.  Just the other day, I pointed to a few letters on a sign at the park, asking her what the letters were, and she only knew a few.  Edward can identify very letter, and has been able to do so since he was Serenity's age.  He could also count to 20 before turning 2.  We haven't done anything different with either kid, except for starting therapy at a younger age for Serenity.  We watch a lot of Sesame Street (on youtube) and lots of Mickey Mouse Clubhouse.  Both shows teach basic learning concepts like shapes, numbers, counting, colors,letters, etc. I am not at all against allowing my kids to watch tv, but I do make sure that most of what they watch is at least semi-educational. Both Edward and Serenity have learned a lot about different things, just from watching tv.  While I've tried to work with them on things myself, they're just not interested when it is Mommy trying to teach them.  They would rather learn things from Mickey Mouse, so I've learned to be cool with it.  Plus, there are some awesome learning videos on Youtube, so I'm happy to let my kids watch them.

Every kid on the Autism spectrum is different, and you can't expect that some thing that works well for one autistic child, will work for the next.  My kids are polar opposites of each other.  However, there are also kids that mine my two look completely "normal". One Autism family that I really admire and look up to, is Cooper's.  Cooper is almost 8 years old, and completely 100% non verbal.  Cooper is on the severe end of the Autism spectrum, while my kids are more toward the other end. While I've been struggling with my kids this week, wanting them to have the most amazing Halloween in the world, Cooper's family has been fighting an even tougher battle.  Check out their story here.

https://www.findingcoopersvoice.com/2018/11/01/parents-whose-kids-wont-trick-treat-tonight/