IEP Update (sorta)

Well as you know we held an IEP meeting on Thursday. Well I think the school went into C.Y.A. mode. In attendance were the Principal, Staffing Specialist, District Behavior Specialist, School Psychologist, ESE Coordinator, Garien’s previous teacher, his current teacher, his old ESE para that assisted him in the previous class, the Occupational Therapist, the Speech Therapist, and of course my other half and self. So they called no stops in making sure that EVERYONE was present.

Now I could go through this meeting step by step to give you an idea of the bureaucratic garbage they put parent through but I want to start my day off in a happy place. So I will tell you there was a lot of back and forth at first with addressing concerns and asking for accountability. And happily enough I had the support of more then half the bodies present for said meeting. For crying out loud the principal even said in front of district staff that Garien needs a Parasefic. That kind of thing NEVER happens, it practically blew my mind.
However certain labels and such on my sons IEP have to be changed and that couldn’t be done at that meeting. The psychologist needs to complete Garien’s IQ testing. But once that’s done we will be able to drop the SLD label and get the ASD on there where it should be. Once that’s in place I can fight the district and school board for his own para.
However on the WHAT ARE WE DOING ABOUT THIS UNTIL THEN front.. Because that was my other struggle. Garien’s classroom placement has been switched to something that I hope will give him better support and more opportunity to succeed. He is soo smart just given the ASD label he struggles with social skills and appropriate behavior. He also have a sensory processing disorder which makes being in a classroom or any room for that matter difficult because too much noise or light and hes gone. Not to mention if he has to touch something and it feels wrong your in for a meltdown. He was getting better, but after putting him in the ESE separate classroom he tanked. ):
So he’s been moved to a STEAM class, which is like AP math and science for first graders. Not to mention its a GenEd, so he will be surrounded by better role models for age appropriate behavior. And the cherry on top, there is one other child in the class who has a Paraprofessional who has agreed to take Garien on while we await his label change and find him the right Parasefic!!!
(BTW the parasefic only takes one child, paraprofessionals may take classrooms or a few children depends on the class make up) But we agreed to do this because this Para is AMAZING!!! And she only has the one child in there currently so she would be able to work with both of them.
So I toured the class on Friday and met with the teacher and para. I have a good feeling about this. I really hope this is the right environment for my son.

And on that note I’ll end my post today. I have a meeting with the ABA therapist today at 9am. I’m hoping they will also be able to help Garien.

**profanity** School Politics Regarding ESE

You know whats frustrating the politics involved in the schools regarding ESE. The schools get so much money for EACH child enrolled and receiving ESE services at the school. But god forbid that child actually need that money for their own educational services. Not only do they require proof which I get, because I would be just as pissed to find out that funding went somewhere else. But its like you have to sell them the proof. Its all there! Black and fucking white!!!!!! RIGHT THERE… But unless you go down there stomp your feet and rub their noses in it like a dog that shit on the carpet they don’t see it. A giant pile of steaming feces on that pretty carpet and they don’t understand why your yelling. And then to add insult to injury when they finally realize what you’ve said to them and given them all the “evidence” and “proof” they could ask for because trust me they ask for ALL of it. Then they take the “Are you SURE your child needs this? stance.. Are you shitting me. If I didn’t believe that this was 110% percent necessary I wouldn’t be at the school 4 separate times in the last 6 school days.. Seriously why would I waste my time and my breath saying this is what we need to do. And then be like well maybe you’re right.. I’m flabbergasted, I just spent the last two weeks researching other options, and beating the shit out of myself with worry because I need to do something but I worry about the affects in regards to my son. Are you sure? I seriously wanted to ask them “What the fuck do you think?” And then of course well it can’t be done right away.. Things like this take time, and need district authorization.. Seriously?!?! We made the class change three months ago without any district personnel there saying “hey this might not be a good idea.” But three months later with educational and behavioral regression, Now they need district personnel because well moving him back might not be the best option for him… I’m standing here dumbfounded wondering if I’m the only person who actually heard what they just said. I’m not taking no for an answer. I’m not one of those parents that balks at confrontation when it comes to my child. They want to play this game and they are going to lose. I know my rights, and I know all the procedures and safeguards and I know where my resources are. This school has picked the wrong Mother to have this pissing contest with.
I want to apologize for my unprofessional manner. I have to keep my composure when I’m doing all of this at the schools and sometimes you just have to let it out.  

On a lighter note Garien’s winter vacation has been extended another 4 days. That was the soonest they could get the district staff available for his IEP meeting.

Happy New Years!!!

Welcome 2015 and so long 2014. The passing year many things have changed in my life and I feel like I should share some of the big ones and maybe a few small ones.

This past January was for the most part completely uneventful so what a way to bring in the 2014. LOL

February 2014 marks the date of my son’s second surgery. He had his tonsils and adenoids removed. For the most part he did great however due to the pain in his throat and asthma he did have some issues coming out of the anesthesia.

The month of March brought my birthday and immediately following that the removal of my appendix. However March was also the first appt with the Developmental Pediatrician where Garien was given his first diagnosis.

April was rather plain, I did go from working tech support in a brick in mortar building to leaving that company and beginning the work at home process. We also adopted our fatty fat cat Cleo. Garien loves her.

May was when he discovered that we were going to be making the move we’d been talking about for two years. We were waiting to confirm out moving date which we’d preferred August/September.

The first day of June we found out that in order to move into the apartments we wanted so badly that we would be moving in July!!! All of my prep packing wasn’t enough to prepare for that…

July brought two huge changes in our life. On the 10th Garien was officially diagnosed with Mild to Moderate ASD where we would begin our journey to helping Garien learn some awesome skills to make his day to day life easier, and the day I decided to learn to fight for my son. The following week we packed everything we owned and moved **900 miles** to our new home!

August brought new schools and doctors offices. This was probably our second most relaxed month this year. We also celebrated Garien’s birthday this month instead of July since we were literally moving on his birthday. We had an awesome pool party Garien had a blast!

In September many changes had to be made for Garien. He’d spent nearly the last month and a half in school but it was rough. We made the decision to move him to a new classroom in hopes of being able to challenge him and help with his behavioral issues.

October was pretty mild Garien went in for his well Child check where we’d discovered he’d grown nearly 3 inches since the move!! That was awesome lol and the Pediatrician referred us to a neurologist. Since moving to FL we discovered that most children here didn’t see a development ped, mostly because there are a total of 3 within a 5 hour drive radius. So most of the ASD kids here see a neurologist after having their ADOS which we did in VA. All was fine I liked the Dr and she referred us to ABA therapy, OT, Speech, MRI, blood work, and an EEG to be done this month (Jan 2015)

November was nice We finally had Thanksgiving with family instead of just the three of us. The week prior to Thanksgiving Garien had a variety of appointments, dental cleaning, the MRI, and two therapy evaluations. All of which went in my opinion extremely well.

December brought Christmas which I already wrote about. It also brought some test results that I’m not ready to write about. However those results required more tests that were also done in December. Garien started occupational therapy this month as well which he enjoys greatly. And this month also brought a change at school. He was moved from the Gen. Pop bus to the ESE bus because he was having difficulties sitting and keeping his hands to himself. I didn’t feel comfortable keeping him on that bus any longer because he was being a danger to himself. But he’s much happier on his new bus so its a win win in my book.
So in closure to 2014, you brought many changes into my life, some amazing and some that I still cry about at night when no one is listening. But overall the year was extremely positive and I can’t wait to see what 2015 has in store for my little family.

Happy New Year

*edited the mileage

Happy Holidays!!!!

Sorry I haven’t posted in a few days. With the holidays and having an autistic child there is a lot of preparation that goes into getting him ready for the holidays. Because there is no way to work his schedule around driving north 2 hours and spending a total of 26 hours and of course seeing family he hasn’t seen in a while who will want him to hug them and maybe give them kisses and be a “regular” child. So I do my best to prep him with everything I can. Now don’t get me wrong the majority of the family respect my sons boundaries but there is always one family member who he hasn’t met yet or a friend of that family that shows up and doesn’t understand why he is the way he is. Its sadly a fact of life.

However our first stop this year was to his Grandpa Tony’s house! Garien loves spending there because Grandpa Tony has a large dog that just loves Garien sooo much! Her name is Chloe and she would follow him everywhere! She sits on the couch next to him, she chases him around the yard and when he goes to bed she goes with him. I never worry about him when we are there because she is very protective of him and I know she would never let him do anything he shouldn’t and there’s not a snowballs chance in hell she’d let anyone else hurt him.
Now back to that one guest that of course had never met Garien (because there is always one) This year it happened to be the childhood friend of Grandpa Tony’s wife Denise, her name was Sandra. However much to my surprise she didn’t play out like that typical guest. She is actually a special needs teacher in Southern Florida, so she was the perfect guest for Garien. He also enjoyed spending time with her, so all my prepping pretty much went to waste for this trip! But in a good way!!

Flash-Forward to Christmas Day (of course my son was spoiled rotten by Grandpa Tony!!) But now we have to drive another 2 hours in a different direction so we can get to Grandma Bess’s for Christmas Dinner. And this was the event my prepping came in handy for. She had invited 14 people and they all showed up! Lucky for us her house is rather large so it didn’t feel like we were sardines. But when you put that many people at a table for a 5 course meal its a sensory overload like none other. Poor Garien was practically begging to get in my lap, he just couldn’t handle all the noise and laughing. But I’m a planner and I knew this could happen. I arranged with Grandma Bess earlier that day to use the empty spare room for Garien (and the other two little girls who were coming as well) But the only thing in this room is a small TV and movie player with a few of Gariens movies. I grabbing some extra pillows and threw them in the corner and made sure to bring Gariens extra soft blanket. When Garien got to the point of no return I asked him if he needed a rest. And with the most excited yet calm response I’d heard from him all night he said Yes Please!

So I took him to the spare room where he climbed on top of the pillows and I shut the door. I threw the blanket over his head and you could see the tension just melt off of him. I told him he could stay in here as long as he needed and if he wanted to come back out when he was ready I would be at the table. He sat in there for a good ten minutes before I went back to check on him. He was sitting in the same position and very still. You could tell this party was just going to be too much for him. So I pulled the blanket off his head had him lay back and put on a movie. You could tell he was relaxing to the idea of not having to leave the room for awhile. Sometimes you just need a little cave to hide in. I told the girls that he was watching a movie if they wanted to go watch it as well. They were also happy to not have to sit at the table anymore. I went back to check on them another 15 minutes later and they were all huddled up on their own pillow having a much better time. YAY for planning!

Well I hope you all have a lovely holiday and you got to spend it with people you love!

Lazy Sunday

So last night while Garien and I were building his gingerbread house he started coughing. 😦 Garien has asthma and with that he tends to be more susceptible to upper respiratory colds. So I pulled out the *yucky cold medicine* and gave him some before he went to bed.

And sadly I was right this morning when he woke up he had a cracking voice, a nasty cough, and nasal congestion. So we had a lazy day today. Hung out in my room until around 12. He tends not to eat when he doesn’t feel well so I don’t push the breakfast issue. Keeping him hydrated is more important. He snacked on dry cereal for the afternoon while we watched some football.

We played some video games and just relaxed today. However we did have to make a run to the drug store because we ran out of his cold medicine.

Tomorrow Garien has to go in for blood work, after his MRI results the doctors are a little concerned with what they saw so they added some extra tests. He isn’t going to be very excited tomorrow.

He did seem to feel a little better with the new cold medicine even decided to eat some pizza.

Happy Holidays

So this afternoon Garien decided that he needed to buy something for Dad for Christmas. So an impromptu trip to the Books A Million so he can pick out an inexpensive trinket for Dad. Now mind you I have no problem with Garien wanting to get something for Dad. I think its super cute, however I do need to teach Garien that shopping during the last weekend prior to the said holiday isn’t something he ever wants to do again.

He has sensory issues, loud noises too much stimulation and he tends to either shut down or have a full on meltdown. And of course this weekend you couldn’t go anywhere where it would be the “perfect storm” for him. So we battle the crowds at Books A Million and Garien was extremely irritable and clingy. But we found something in record time and were soon on our way home. Now I know my poor boy was overwhelmed because the ride home when I asked why he was being so quiet he said “I’ve decided that I’m going to be a ninja, and they don’t talk” so he sat in the back seat not moving or speaking for 40 minutes. But he really did a great job, I was very proud of him. Now if he can only keep the present a secret we’d be getting somewhere.

One of our holiday traditions is the making of the Gingerbread house! This tradition started with me making them and him watching and telling me where I should put what. Thankfully with the ingenious idea of buying my little man son gloves he’s able to assist in the building process. I’ve attached some pictures. He really does enjoy this part of the holiday. We also talked about Santa, and the importance of being grateful when you don’t always get what you ask for.
He’s of the opinion that Santa is going to be bringing him both Disney Infinity 2.0 and the Star Wars Rebels Inquisitor Lightsaber. Well for those of you who aren’t familiar with these two items, the Disney game is damn near 80 dollars if purchased before black friday. And well I’m not a fan of the black friday shopping so his was purchased before. And that lightsaber is 30.00. Alas santa couldn’t afford to purchase both. And trying to explain to him that Santa is only bringing him one gift was trying.We told him that he has so many family members who love him and are going to buy him gifts that Santa wants to be able to give more presents to children who don’t have as many. I’m afraid that hes going to have a full on meltdown when he sees the lightsaber that his grandpa got him. And before you read this and think “wow what a spoiled rotten child” Garien sees everything literal. Example: For his birthday he received a gift it was Luke Skywalker and Darth Vader action figures. He LOVES star wars, but the package read “NOT FOR CHILDREN under 3 years of age” Now all he saw was the not for children because it was bolded. He cried because he couldn’t understand why someone would buy him a toy that wasn’t for kids. It took me 4 hours to calm him down and help him understand. And nothing makes a parent feel worse than having a child look like hes isn’t grateful for a gift especially when it was purchased by one of their friends. I will tell you that its been four months since he received that toy and it is still one of his favorites. So I’m worried that hes going to see this (by the way its a freaking awesome light up Yoda Lightsaber) lightsaber and get upset because he doesn’t remember asking for it two months ago. And in the last two months fixated on a different one. We are working on his behavior, but his social interactions are quite behind and well to an outsider who knows nothing about him would seem extremely rude and that of a spoiled rotten child. I’m still in the process of teaching him what we should say when we receive a gift even if its something we didn’t ask for or already have.

A mostly up to date post..

So my previous posts where just to kind of lay the ground work for my blog.

This fall, due to a relocation Garien had to start seeing a new primary care doctor. And since we started our autism journey later then most he is just now seeing a neurologist and the other specialist that come along with this type of diagnosis.

So this blog is going to be a record of what we do, who we are, and Garien’s treatments and such.

So with all that said I hope that if any mother or parent is in need of support or assistance or advice PLEASE don’t sit in silence.

The A Word

So I made an appointment with his regular doctor and we discuss everything that has happened over the last three years with his development and my concerns. The agrees and states the he shows multiple characteristics of Asperger’s Syndrome. One of the many conditions that is covered under the Autism Spectrum Disorder Umbrella.

However she isn’t a development pediatrician so of course we get a referral to one. Sad thing about getting to the Developmental Ped is it takes MONTHS and I’m talking like 8 months exactly to been seen. We finally get in, at this point Garien is 6 years old and in kindergarten. March of 2014 was the first time Garien’s medical records would list ASD (autism spectrum disorder) Now anyone whos ever gone though this knows that there is one more very important appointment after this where the child under goes an A-DOS screening. Its pretty much the gold standard for any ASD diagnosis. And much like my first appointment you get put on a wait list. Some parents have waited up to 18 months for this screening which is more or less a glorified play date. I was one of the lucky parents who won’t talk waiting sitting down. I called the office every other day asking if there had been any cancellations. I even told them I would drive to ANY office, which is where I was saved. They had a cancellation that happened minutes before I called in, but was at their office that was nearly 2 hours from my home. I however didn’t care I took it.

Garien was diagnosed with ASD March 2014 and it was confirmed July 2014. Now you have to imagine every parent thinks about their child future and we all have “plans” After the struggle I had with Garien in the beginning and how he fought so hard to stay alive I knew my son was going to be a fighter which meant that in the dreams I had for my son he was going to go to college get an amazing degree in whatever field he wanted. And I knew he would because he wouldn’t take no for an answer.

In March I came home from that appointment and I cried for hours after Garien went to bed. I felt like I mourning the loss of my sons future. (Now don’t get me wrong their are plenty of extremely successful Autistic members of society so my son’s life isn’t over.) But in that moment all I could think about was what can I do to make his life easier what expectations am I suppose to hold him to. Will he grow up to be that child of my hopes and dreams. Will he ever get married and feel the love that I have in my life. Will he ever know what it feels like to watch his heart walk in front of him.

I allowed myself that night to grieve any loss that I thought I was feeling. And when I woke up the next day I was a different person. I decided that Garien will have that life I dreamed for him because he has everything going for him. Hes really smart and sure he has struggles but I know what he needs now so I can help support and push him when no one else will.

I decided to use the mantra “My son is autistic, he’s not suffering from autism” I know there are 100’s of thousands out their who are searching for a “cure” and I guess you could say I’m lucky because my son has a moderate case of autism, so he speaks and he can kind of function in a normal society so maybe my view is skewed.

But my son isn’t broken, he doesn’t need a cure. He needs skills. I have anxiety, I have coping skills to help myself with I have an episode. And that’s what I’m going to stress to my son. Sure he has some limitations, he doesn’t like the sunlight because its bright and hurts his eyes, so he has sunglasses. He loves to watch me cook, but can’t help because if the food touches his hands and its the wrong texture it sends him into a panic so we bought him gloves and now he can make cookies with me. The world isn’t going to change for him, so I need to give him all the skills I can to help him make the most of his life.

If I Can’t See It, Then It’s Not There

So fast forward another 6 to 8 months and I’m looking for any other reason why my son is speaking anymore. I took him to and ENT because I suspected that he was tongue tied. Good news was that he was and need a minor procedure where they clip under the tongue to allow it to move more freely. The bad news was of course that wasn’t what was causing my sons problems.

I then got in touch with the local school to discuss their early intervention options that Garien may qualify. The school did a complete comprehensive evaluation and of course that A word was brought up again. They also recommended he see a specialist. But in the mean time he qualified for the early intervention program, he was given a developmentally delayed label and started school a year early.

Putting Garien in school was perfect for Garien. He flourished in the environment. It was stable and structured and he was extremely smart. Slowly Garien’s loving affectionate came back, at least for the people who had it prior. But his eye contact struggled.

After Garien’s first year in school it became apparent that I was doing my son an injustice. He was struggling with things that came so naturally to other children his own age. He couldn’t develop relationships with them, hell he didn’t even know how to play with them. He would just stand back and watch them play, you could see that it made him happy. But you have to then ask yourself, wouldn’t be he happier if he actually played with him.

I had to take a step back and ask myself probably one of the hardest questions I’ve ever had to answer.
“Is this any better?”
I was afraid of the stigma Garien would go through if others heard he was “autistic” but watching the other parents stare at my son and how the other children would avoid him. It hurt me so much. Garien didn’t notice, he only sees the good in people. So he didn’t realize that when other moms would shoo him away from their babies that they were uncomfortable they thought there was something wrong with him. He didn’t know that when those children laughed they were laughing AT him and with him.

I finally called the doctor. Garien was nearly 5. I failed my son because I knew when he was 2 and didn’t do anything. So I waited another 3 years because I was worried. I can’t imagine the progress he would have made in those 3 years. And it makes me sick.

But whats sad is this story gets worse at least from my personal opinion.

The Calm before the storm

After Gariens rough start things smoothed out. I was happy he was happy and life went on. Garien didn’t meet all his milestones on time but that was to be expected given that he was preemie so the doctors weren’t that concerned, everything else seemed normal. His first word was delayed to nearly 9 months he said “Ma” I can’t even begin to tell you how that made me feel. After everything I went through to make sure he was happy and healthy and he knew who I was!!

His speech didn’t progress a great deal, never anything more then 2 syllables and very simple. He crawled late, we walked late. But once he took to something it was like he’d been doing it is whole life. I knew that my baby was going to be just fine. His teeth even cut late. But once that first one came through he practically had a mouthful of teeth within the week.

And then something happened. I put Garien in daycare while I got a job outside the home. The daycare worker came to me and started asking me questions. Like does he always walk on his tip toes? Why doesn’t he look anyone in the eye? Did you notice that Garien gets upset when he hears certain noises or lights? She recommended I get him in early to his doctor (his 2 year check up wasn’t for three more months) and then also gave him some info the public school offers for early intervention.

After that conversation I called the doctor and got him in as soon as possible. We talked about his behavior and how lately he didn’t want to be held anymore. How he stopped trying to talk almost completely how he’d stand and spin for mins on end but never smile. We did a few basic preliminary tests which he failed miserably. And this was when his doctor said the A word. The doctor said that Garien was showing symptoms of autism. And she recommended sending him to a development pediatrician.

Now this is where I feel that I failed my son.

I didn’t take him to that appointment. After listening to the doctor I remembered all the “special education kids” I knew growing up and I knew that my son was just fine there wasn’t anything wrong. But I wasn’t right, I was afraid. Afraid of what other children would say about him, how people would treat him differently. I knew in my heart that my son was going to be an amazing human being and I didn’t want him to have to live with the stigma of that diagnosis. I was stupid.