Sunday, July 2, 2017

Transition to Public School

Ok...so...I know I "ended" my blog  last year. I really do miss blogging so much but it was the right thing to do. I do feel however, that I should update readers with what is happening with Mason as he transfers to public school from his autism school that he has been in since he was 2.

His IEP is almost done, and I didn't want anyone to think this journey ended with him skipping off to first grade-so I wanted to quickly share what the plan is for next year, and some developments in Mason's personality.

Before I go into the IEP, I want to discuss a little about "repetitive behaviors".

"Repetitive Behavior" is a criteria that is needed for a person to have a diagnosis of autism.

Mason has always displayed some type of repetitive behavior-as a baby and toddler he would spin objects, and he was obsessed with the alphabet. (You can read about these obsessions early in my blog).

Now that he is talking (and seriously...the kid does not stop talking) he repetitively talks about the same subjects over and over. Specifically- birthdays, ages, important dates. He wakes up every day and asks me how old I am and when my birthday is...even though he knows the answer. When it is someone's upcoming birthday, he talks about it non stop. He knows everyone's birthday I am pretty sure in the whole school!

Anyway I have recently come to find out that if you tell him your birthday and it has already passed from this year...he can tell you what day of the week it fell on.  At first I thought he was calendar calculating, but what I actually think he is doing is he can remember an important event close to the birthday in quesiton, and do some crazy counting in his head and figure out the birthday from there. For example-His birthday was March 1st and was on Wednesday (I had to go look LMAO) if someone says their birthday was March 10, he does some math in his head and right away can tell the day of the week.

He also remembers every important event (important to him)-the date and the day of the week. And he will never forget it. So I think that he has so many birthdays memorized in his head that if a random person tells him their birthday he has enough dates to use as a starting point.

Anyway-my point is...my child is brilliant.LOL hehe. No seriously I really think it is interesting and just wanted to add it to this blog.

Now... On to the IEP...

Mason's team at his current school 100% felt he was ready to mainstream. Academically he is ready for 1st grade. So basically I am going to just list the evaluations he had, who they were done by, the outcome, and the IEP.

Now the psychological Evaluation for the most part was difficult to get through, Like...SUPER HARD. I have a kid that can calculate dates in his head and had to read this:

"Mason's overall cognitive abilities are within the low average range with a full scale IQ score of 81, as assessed by the Wechsler Preschool and Primary Scale of intelligence-4th addition. Mason's verbal comprehension, visual spatial and processing speed abilities are within the very low range. Fluid reasoning ability is low average. A relative strength emerged in his average working memory ability."

Other than the last sentence (which was not a surprise) I think it took me a whole week to get over reading that paragraph.

Here is some information regarding IQ values: (And I know I shouldn't "pay attention to the scores yada yada yada, however it is his score and I am not going to pretend the school did it to offend me or something. It is what it is and it is a part of this journey so I am posting about it. Mason's score and meaning is in bold.)

140 and above- genius. approximately 0.2% of population have this IQ
131-140-exceptionally high. 3% if population have this IQ
121-130- highly above average. 6% of the population have this IQ
111-120-above average intelligence. 12% of the population have this IQ
101-110-high average. 25% of the population
91-100-average intelligence. 25% of the population have this IQ
81-90- slightly below average intelligence. 10% of the population have this IQ
71-80- lower level of intellectual disability. 1/10th of the population have this IQ
51-70-slight intellectual disability
21-50-mid level intellectual disability
Up to 20- High level of intellectual disability

According to the Young Children's Achievement's Test, Mason's reading, writing and math scores are in the average range. His general information and spoken language skills are within below average range.

Two subtests from the Woodcock Reading Mastery Test were administered to Mason to assess his ability to identify letters and phonological awareness. Mason performed in the average range on both subtests.

Anyway that basically the summary of the Psychological Evaluation. There is other information like description of the eval, how scoring is done etc... The only good thing I can take away from this (information from a friend who is a child psychologist) is that when Mason was 3, he had a similar IQ test done and he scored a 69 which is severely delayed. If he was still scoring that low, there would be major cause for concern. His score now is 81 which is low average....which is different from BELOW average. From her perspective, this shows immense growth the last 3 years and she said most likely his language delay played a part in the low score.

Which brings me to the Speech and Language Evaluation:

The CELF:5 was administered to assess overall Language Abilities. (blah blah blab boring info about the test. google if you want to know more about the test, I don't feel like typing all that out).Sentence Comprehension: This subtest is designated to evaluate the student's ability to interpret spoken sentences of increasing length and complexity. Mason scored in the low average range on this subtest, placing him in the 16th percentile when compared to same age peers. Mason displayed the most difficulty with prepositional phrases, modifications, and compound. Mason was cooperative and attentive.

Word Structure: Mason received a scale score of 6 placing him in the below average range.Mason displayed difficulty with irregular plurals and past tense, objective and subjective pronouns, future tense, comparative and contractible and uncontractible copulas. Areas which require and expressive response appear more difficult for Mason while testing.

Formulating Sentences: Mason scored a scale score of 6 on this subtest placing him in the 9th percentile compared to same age peers.

Recalling Sentences: Mason scored a scale of 7 on this subtest, placing him in the low average range when compared to same age peers.

Expressive One Word Picture Vocabulary Test: Mason received a standard score of 104 placing him in the average range compared to same age peers.

Next in the eval is the VB-MAPP which I don't understand. And DANG there is a lot of info!
Wow there is a lot more information in this VB-MAPP. Ok skipping for lack of understanding.

So..those were my summaries of the evaluations and the results. Now on to the IEP...

Mason's educational diagnosis is Autism due to meeting the following criteria:

  • Engagement in repetitive behaviors
  • Engagement in stereotyped movements
  • Resistance to environmental changes or change in daily routine
  • Unusual response to sensory experiences and lack of responsiveness to others.
Based on the evaluations, Mason has goals that he has to meet by the end of the year in areas of Language Arts, Functional, Math, Speech/Language. (I don't feel like typing them out) but they are things he should be able to do in 1st grade. If anyone has no life and is interested in the goals, message me because I don't feel like typing. (Seriously...this eval is 20 pages)

Mason will be in a general education class with a 1:1 aide for specials (art, gym etc...), arrival, dismissal, hallway, homeroom, lunch, recess. He will be in a much smaller special ed classroom with his 1:1 for Math, phonic, reading, writing, and he will have a Skills for Success class for 45 minutes a day in the special ed class. There will be group speech in the Skills for Success class.

He will get Group Speech and individual speech twice a week for 50 minutes total. (Note- Mason will not be working on "speech" but more language/pragmatics). He has goals he will meet by the end of the year.

I loved reading this part of the exam where they describe Mason at the end based on interviewing/ interacting with him:

Mason loves birthdays, his favorite colors, Cat and the Hat, Christmas, and his Ipad. Mason loves star wars, angry birds, and bob the train. Mason loves his snowman family, and has Christmas toys out all year round. Mason's interests include basketball, airplanes with banners, trains, Christmas, and swimming.Mason is interested in and has a wonderful memory of calendar dates.

So...that is that. Reading through it was difficult however he mostly scored "low average" in everything so I guess that is equivalent to C-. Considering 3 years ago he scored...like in the negative percentile, this can be considered progress. I believe he will continue to make progress-as language becomes easier for him, I think we will see these test scores continue to go up. 

Well that is the IEP. Blog started in December  2012 and I had NO IDEA what the F was going on.

In September 2017 Mason will be mainstreamed into 1st grade with a 1:1 aide, be in a general ed class for part of the day and special ed for part of the day. He will get pulled out for speech/language and also we currently have an OT eval pending. The school also has a BCBA who will work closely with the staff. Lots and Lots of goals are listed for this year!!!

Phew-that was long. 

And onward we go!!!



Tuesday, December 6, 2016

The End....

I thought long and hard about this, and I have decided to end my blog at this point.

In two weeks, it will be 4 years since I started this blog.

Mason will be 6 in March.

I began this blog December 21, 2012 when Mason was 21 months old

Initially a few months ago when I thought about ending by blog, the reason was unrelated to Mason directly. However the more I think about it, I no longer feel it serves its purpose which was to help me cope with the early years of learning about autism, trying to figure out my son, and providing an outlet so I didn't keep everything inside and go crazy.

I also feel Mason is getting older and starting to really read, so it is probably time for me to stop discussing his development with everyone on the internet.

So based on those reasons along with the original reason which I don't want to write about, I feel this is the right decision.

This blog helped me so much and everyone who has read along has helped me so much too.

Learning that your child has a disability is a very scary journey...especially when you no nothing about it.

I knew nothing about autism.

Like...nothing.

I am actually embarrassed about a lot of my earlier posts...however,  I have chosen to leave them up so hopefully it shows growth on my part in regards to my initial thoughts on having an autistic child, and how I have changed.

Obviously my opinions are strictly based on my own personal journey.

Autism is a spectrum but at the same time, being neurotypical is also a spectrum.

The saying goes if you have met one person with autism, you have met one person with autism.

We can say the same thing about neurotypical people.

Everyone has different strengths, different challenges. Every single person whether they are on the autism spectrum or not.

It is important to remember that "autistic" doesn't mean one type of quality of life for an individual.

It is important to remember that as parents we need to focus on helping and not curing.

I have grown and changed and learned so much from a tiny little person.

I would never change him for the world.

I would never change what I went through.

I would do everything the same.

Smart. Funny. Quirky. Loving. Autistic.

That is how I describe my son.

He has worked so hard to overcome all of the obstacles he was faced with since he was a baby.

I have advocated  very hard to ensure everyone around him (including me) try to see life through his eyes, and not force him to see life through all of our eyes.

I hope I was successful and still will continue to do so.

I hope anyone who reads this in the future finds comfort and help, and I want to thank everyone who has followed along the last 4 years.

Mason is doing great in kindergarten.

I am still nervous about the future. I am nervous about 1st grade next year. I am nervous about bullies.

Parents reading please talk to your children about bullying and about accepting everyone for who they are.

Being a parent is hard.

A whole piece of your soul automatically goes to another person in a way that it has never before, and you have no control over the emotion that comes with that, and no one can ever explain it to you unless you are a parent.

I was happy to share my journey and I hope Mason, one day,  understands why I did this.

I need to close doors in order to open new ones, and this door is ready to be closed.

Maybe now I will start a new blog about being single and attempting to wear hoe tops at 40 years old.

Hehe just kidding.

THANK YOU EVERYONE FOR YOUR SUPPORT!!!














Sunday, November 13, 2016

More Success!

Giving Mason hair cuts has always been...a challenge. 

Actually... it has always been a nightmare. 

Me holding him, hair flying in my mouth, my 79 year old grandfather sitting and crawling on the floor trying to snip hair, Mason screaming. 

Both of us crying. 

Bribery. 

Me sweating and praying I didn't accidentally get stabbed from all the commotion. You know. Totally fun. 

At 2 years old, it's not that bad. At 5 it's...horrible. 

Anyway since Mason has been in his autism program (since 2013)part of his program has been hair cut tolerance... talking about hair cuts. Watching hair cuts on tv. Practicing fake hair cuts. Me taking to him and telling him he won't be hurt. 

Today was the very first time he got his hair cut and I wasn't in the same room...there was zero anxiety. 

He got the comb, scissors, and water bottle with Pop (my grandfather) and stood on the chair like had been doing it his whole life! And they laughed and told jokes the whole time!!! 

No holding him tight to ensure safety and my grandfather could actually stand and not crawl around the floor. 

Very proud of Mason...and my Pop for never stabbing me in the eyeball by accident lol .

 I think this year a lot of his anxiety triggers have been conquered and I am so happy for him!!


Saturday, November 12, 2016

Thank You

Today I was thinking about how people I didn't know (but did get to know and they are all wonderful people) had to actually TEACH Mason communication.

I guess I thought of it this morning when Mason woke me up and said "Good Morning Mom! What are we doing today? Can we go to the mall?"

Ok before I get into this-I have no idea why he asked to go to the mall LMAO.

Anyway-

His sentence was so clear, with the proper inflection.

I have no idea why that was my thought when he simply said good morning and asked to go to the mall.

I thought about all of the people who have helped Mason these last years.

Mason did not just need help speaking.

He was one and a half and had not hit one communication milestone except having a social smile.

I remember when he was evaluated by early intervention, I was asked what my goals were for him?

"I want him to understand that objects and people have names"

That was the first thing out of my mouth.

How is he going to talk if he does not understand what things and people are?

"I want him to mimic"

How is he going to mimic sounds if he does not understand this concept.

"I want him to point"

I remember making a photo album with pictures of mom, dad, Annie (our dog), a sippy cup, a bowl of cheerios, the bath tub.

I remember sitting with him and over and over putting his hand on the pictures and saying what they were over and over.

I remember the first time I knew he understood something had a name. It was actually a fan. Back then, Mason was obsessed with fans and things that would spin.

I said "Do you see the fan?"

And I remember he looked at the fan and then looked at me.

I think that may have been our first true moment where I knew he understood me.

He was probably just shy of his 2nd birthday.

I remember when he started ABA and I was crying hysterically because to me it looked like they were dog training because they were using food as a motivator to get him to mimic. I was assured it would not be this way forever but they had to use food because at the time, he was still functioning at an infant level for communication.

I watched the therapist over and over touch her had and say "do this" then take his hand and put it on his head. Then give him a cracker.

I understood the concept but it just reminded me of when I was trying to teach Annie to sit.

But it was true-once he understood the concept that he could work for something it no longer looked that way to me.

I remember EVERYTHING he was taught was jut repetition over and over and over and I wondered to myself...

Is this how it is going to be his whole life? Will he never learn on his own?

I thought of how we used milk and juice to teach him to ask for something.

I would put a cup of milk and a cup of juice on a table and take his hand and say "milk" and "juice" over and over. When he did develop approximations for those words (I think he called them guk and duh) we added "want"

I would take his hand and touch a cup of milk or juice and say "Want milk. Want juice"

I remember the day it seemed to me everything "clicked" for him.

He was just looking at me and pointing to things and wanting me to tell them what they were. Maybe he was 3.

I remember the first day he asked for juice. He was 3. You can read about it here

I felt like after this, he started to learn from his environment as opposed to repetition over and over. We started to help him understand abstract concepts. We worked on things that gave him anxiety- birthday parties, putting on winter clothing.

We practiced having little birthday parties, singing happy birthday softly and encouraging him to open gifts. This was probably in his ABA program for 3 years.

There was a "winter clothing" tolerance drill in his program where he would have to wear a coat for 1 minute and when the timer went off, he could pick something he wanted to do (a snack, play outside, watch the iPad for a few moments).

I think this is the first year he does not fight me about winter clothes.

He understood his birthday last year. He understood Halloween and he fully grasps the concept of Christmas.

Now in ABA he  does school work type skills and there are a lot of social skills he works on too- he has zero volume control when he talks, and he really doesn't give other children personal space and he touches kids like on their heads or face-he isn't being mean he just gets excited-but obviously that makes people uncomfortable-so we have to encourage him to do something else with his hands.

Anyway, back to Good Morning Mom! What are we doing today? Can we go to the mall?

I thought of the days when I felt like a therapist and not like a mom.

I thought of how my mind felt like a clock and I just felt like I was losing time.

I think it is really weird that is what I thought of.

Now I am looking at Mason and he is singing "Monster Mash" and dancing in the living room.

Earlier he ran up to me and said "Mommy I drew a picture of you without hair!" and he thought it was the funniest thing.

I thought of all the people who have helped Mason learn communication.

I thought of all of my friends and family who have been so encouraging and who have been there and supported me.

Thank you, everyone.










Monday, October 31, 2016

A New Friend

I wanted to share this really cute story about Mason and an interaction he had with another child while playing on the playground on Saturday.

So my mom and I took Mason to the playground and there were about 10 kids. There was a little boy who looked about 7 or 8 who we found out was also autistic.

He was really really friendly and wanted to interact but he could not speak.

He had behavior which reminded me a bit of Mason-kind of doing things and not socially aware that other people may think it is strange-Mason does that stuff all the time.

He took a liking to Mason right away and Mason engaged with him.

They chased each other around here and there but Mason was kind of doing his own thing trying to climb up slides and do the monkey bars (which OMG I had no idea he could do????)

Anyway my mom and I happened to be sitting next to the boy's father and he mentioned that his son was autistic so of course I said that Mason was too.

The dad kind of smiled and looked surprised and said "Oh really? He really looks fine-you can't tell"

I have to say I did wonder if his son was autistic-I could tell he was special needs but as the saying goes-if you have met one person with autism you have met one person with autism and I really just wasn't sure.

I am sure there were a lot of challenges at home that I could not see on the playground, but I saw a kid that was super friendly and he had great non verbal communication and it was obvious he understood everything that was said to him.

His dad told us he used a communication device to speak

He probably worked very hard to get to where he was just like Mason.

I could tell he had a lot of strengths.

Every child has strengths and every child has weaknesses-NT kids and non NT kids.

All of them.

Mason and the little boy shared a really cute moment together and my mom and I seriously got all choked up and I think the dad maybe did too.

They were sort of back and forth playing, the boy would go down this huge slide and wait for Mason and they would run up and down this bridge thing together and Mason had a huge smile on his face.

About 15 minutes of playing, the little boy waited anxiously for Mason to come off the slide.

When he came down, the boy put his face directly in front of Mason's and made a loud noise-he was excited and trying to say something. But it was loud and right in Mason's face.

I am kind of thinking most kids would have been nervous or thought it was weird and walked away or really would not have known what to do.

I am pretty sure I would not have, and I got a little bit nervous because Mason does not like being startled.

I swear what happened next was the cutest sweetest most innocent thing I ever saw.

Mason ran in place with a huge smile on his face, jumped side to side with excitement, flapped his hands and got in the boy's face and made the exact same loud sound back at him. Actually it might not have been the exact same sound-I think he roared really loud.

Then they both jumped up and down and laughed and hugged each other.

O.M.G  I almost died.

It was like they just "got" each other....I really felt like Mason "found his people."

My mom said out loud "OMG they are soul mates!"

I cracked up because that is what it seemed like.

Later they sat on the slide together and I heard Mason talking.

"Hey do you have  a snowman?"

The boy tried to answer but again it was just sounds.

Mason looked at him and said "YOU DO???What are there names? I have lots of snowmen"

They went down the slide together laughing.

I wish we could all be like Mason and his new friend.







Tuesday, October 18, 2016

If you have met One Person with Autism...

Well, someone again asked me if I felt that Mason was misdiagnosed.

I realize that this is a "good"thing however I don't know why but it annoys me when people ask me this.

I would rather people just say "wow he is doing great" or something like that.

I feel like when people start talking about misdiagnosing autism because the kids are doing well, it is saying that autistic people cannot do well and that is not true.

Autistic 5 year olds can thrive, be happy, be silly, be funny and yes STILL (gasp) be autistic.

Mason is not neurotypical in any way. All of his language and social development was atypical and extremely delayed that is autism at its core.

Like...kids shouldn't need 20 hours of therapy to learn how to point. 9 month old babies point.

So yes...he has joint attention but it did not develop normally in any way.

He, at 5, struggles with pragmatic language which is very common for autistic people.

Pragmatic language refers to social language skills used in daily interactions with others. This includes what we say, how we say it, body language, and whether or not it is appropriate.

He also uses scripting for a lot of his communication.

Scripting is when someone uses a phrase they have heard previously and applies the phrase to a social situation.

I kind of think of it like he has a little Rolodex of responses in his head and when someone asks him something, he goes through his Rolodex until he finds the answer he knows applies to the situation.

He does not do this all the time but I notice he does it frequently.

For a while this summer, he was scripting from Peppa Pig.

He kept telling me that Daddy lost the keys in the drain. He would say this whenever we saw a drain.

He kept asking me if our grass was long whenever we went outside.

He kept telling me he wanted a picnic with tomatoes, lemonade, bread and cheese.

It was all really bizarre and very repetitive and then one day he was watching Peppa Pig and all of these things were happening in the episodes.

So...yeah. He is not Rain Man. I think we all know that. But like everyone in the autism community says..if you have met one person with autism...you have met ONE PERSON with autism.

Autism is a spectrum and if you think about it, being neurotypical is a spectrum also.

No two neurotypical are exactly alike.

So...just think of the autism spectrum in the same way.

Anyway-

He LOVES kindergarten and I think he is really enjoying reading.

He comes home every day and tells me about his sight words and spells them for me and he likes to look for them in books!

The things that come out of this kid's mouth kill me!

Yesterday he asked me why witches "think things are funny" and I had no idea what he meant and then he pointed out that when they fly away on their brooms, they are always laughing.

I seriously almost died.

Also over the weekend, he got in a lot of trouble and when I was telling him his toys were going in time out, he told me he loved me and he liked my hair.

LMAO WHAT???

I couldn't even be mad after that!

I do want to sit and write about how soccer is going, but I feel drained just thinking about it.

Mason is great when it comes to soccer skills, but at this time I just don't know if a team sport is what is best for him-but we are sticking it out.

His attention span is like zero and I know everyone says "oh my kid is like that too" but it is really not the same thing.

Overall though-I couldn't be happier with where we are at this point.

I first started blogging in 2012 and I remember wishing so badly that I could see into the future for Mason.

I see now that his future is on track to be bright and I have no doubt he will be successful.

I know autism is different for every person and the journey of having an autistic child is different for every parent.

But that is life for every parent-you just don't know how your child will turn out.

Bringing up Mason has been the biggest challenge of my life and not because of him, it was because of me. I was scared I was going to do something wrong.

In the beginning I questioned EVERYTHING I did.

I was seriously flying by the seat of my pants, hoping that I did not make a mistake that would wreck his life.

I am so proud that he is my son and I cannot imagine him any other way than who he is.


Thursday, October 6, 2016

Quick Post

Ahhhh!!!

I have been so busy-good busy!

There is a lot to update on and there are a few topics I want to write about but I just don't have the energy to sit down and do it.

When I first started this blog, words literally came out of my fingertips. I wIould just type and type and type.

Now...it is really not like that.

I have to be in the mood to write-which I think is a good thing because I have realized that my unintended purpose for this blog was to cope when I found out Mason was autistic.

And it did help me cope very much.

It was such a scary time.

Sometimes I still do feel scared.

I am very scared for Mason to go to public school in 1st grade next year-this is last year in his private school where he attended Nursery (from 2-3), Pre-K (3-5) and now kindergarten.

But I don't feel like he is DOOMED or anything..which is how I felt 4 years ago.

He is doing GREAT in kindergarten.

There are only 8 kids in his class-I think most of the kids are autistic and I imagine the reason the class is so small is that parents of NT kids who were sending their kids to his school for nursery and pre-k don't want to have to pay the tuition since their kid can go to public school.

I am glad it is a small class-I think that is good for him.

Up until recently, I had wanted him to be mainstreamed in 1st grade but I kind of think a few years in a smaller classroom could benefit him too.

I am just not really sure what is best-our school district will start evaluating him I think in January and I will get to see what types of programs are offered.

I think he could be mainstreamed, but I think he would need A LOT of support and I just don't know if the districts could give that to him, and if they cannot, I don't want to just throw him in that environment.

It would be like being thrown in the middle of the ocean with no life jacket.

But..we will see how it all plays out-I am really open to whatever is best for him and I know I will make the right choice for HIM and not what is best for ME.

He is playing soccer-I do want to sit down and write about that when I have it in me-but I just really don't.  It has been up and down.

For the most part things are great! I always have the worry back in my mind though.

Next year is going to be a HUGE transition.

Anywhoo-just wanted everyone to know we were alive.

Soccer Practice

Mason with his Dad and me

Kanye?