Saturday, April 23, 2016

Information on Red Flags, Therapy, and other Stuff

Red Flags, Therapy, and other Stuff

Lately I have been receiving lots and lots of emails from parents asking what type of therapy Mason gets, how long, what other activities have I done with him, etc...


Also many people who are seeking a diagnosis for their child are asking how he was as a baby, as a toddler, what red flags did he have that lead me to have him evaluated for autism.

All of that information can be found here, but I realize people might not have time to read through 3 years of blogging so I will link some older blogs and then write some general info on this page


Tell Me About it

This entry contains information on why Mason met the criteria for a diagnosis on the autism spectrum. The criteria is now outdated as it was updated in 2014 and all of the old Autism Spectrum Disorders (Autistic Disorder, Aspergers, PDD-NOS) now fall under 1 umbrella of Autism Spectrum Disorder

Break it down for me fellas

This entry describes what we did in Early Intervention and how I implemented therapy even though we only saw the therapist for 1 hour a week ( And yes... I used a Young MC lyric for the title of my blog)

Sail Away

This entry describes all the "red flags" I was seeing when Mason was a baby and a toddler, and my emotions that I went through when realizing Mason was probably on the autism spectrum. I was very emotional when I wrote this, it is kind of hard to read.

Updates

And finally, here is what I wrote a month ago regarding on where Mason is developmentally today.

So as far as red flags-Mason had all of them. By 15 months, he was still not pointing, not waving, not reaching to be picked up, he did not babble, he did not respond to his name, he did not play with toys all he would do was spin them, he was obsessed with anything that spun or had wheels on it and would just watch things spin. He did not mimic. I thought he was maybe deaf, he did not seem to understand simple commands, he could not tell me me verbally or non verbally if he was hungry or thirsty he would just scream and I would have to figure out what was wrong. How on earth my pediatrician thought this was all normal I will have no idea but I basically self referred Mason to Early Intervention

Mason started EI at 17 months (you can read the entry linked above to learn about how that went). In language, social, and cognition he scored between a 7-8 month age level developmentally. Talk about feeling sick. When I saw his scores I immediately scheduled the autism evaluation. I worked very hard with him during the months he was in Early Intervention. Our therapist was only there 1 hour a week and obviously if parents don't continue through the week that she does for that one hour, it is not going to be effective. I actually at one point felt like a therapist myself and not like a mom. It was very draining.

Mason was diagnosed on the Autism Spectrum at 21 months old. The ADOS (Autism Diagnostic Observation Schedule) was used for the evaluation.

The Autism Diagnostic Observation Schedule (ADOS) is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for individuals suspected of having autism or other pervasive developmental disorders.

You can read about the ADOS here 

After Mason received his diagnosis, he was enrolled in a school that just randomly happened to be 15 minutes from where I live. It is a regular preschool but they have an inclusion program so that students with autism can interact with typically developing peers. In this program he also gets 20 hours a week of ABA therapy (3 hours are at home during a 3 hour session). He was enrolled in this program when he was 24 months old. This program costs about $75,000 a year. Luckily it is covered by insurance. One of the important reasons to have a child diagnosed with autism is that there are therapies available that would not be otherwise.

Here is some information on ABA (actually it is pretty informative)

ABA

Once Mason started ABA, I saw huge gains in his development. He started hitting language milestones pretty much right away-things babies do before they start talking- mimicking, pointing, clapping. Mason was 2.5 when he begain to hit those milestones.

So...that is pretty much it. I started Mason in early intervention right away, did my best to implement what therapists were teaching me,  decided to move forward with  seeing if he was on the autism spectrum right away, and once he received his diagnosis,  enrolled him in a really great program and honestly it was just pure luck that this school was nearby.

I hope everyone found this helpful and of course any other questions or if I can be of any other help, please reach out.

Mason in the kitchen: Berlin New Jersey






Mom and Mason: NJ Berlin

Tuesday, April 5, 2016

A General Comment Regarding Why I Write

I'm This blog was started in 2012 when my son was 21 months old and diagnosed with Autism.

I started writing because I found it to be a very good outlet to get all of my feelings out. A little over 3 years later, I am in a good place emotionally and I write updates because I see my blog gets many hits, even when I am not writing anything new, and want to keep everyone up to date because there is obvious interest.

On that day, December 21 2012, I left a neurological center holding my child's hand in my one hand, and a packet that contained information on Autism Spectrum Disorders and suggested treatment of 40 hours of therapy a week, in the other hand. Treatment that was going to cost thousands and thousands and thousands of dollars.

I didn't even know which way to look. I just remember looking up at the sky.

As a parent, hearing your child has a disability with no defined prognosis is very devastating. Walking out of that building that day,  and not being able to fully grasp what I was supposed to be doing to help my son was just as horrible.

I will never forget it. The moment will never go away.

So that night, I started this blog because I wanted to share my journey with my family and friends who love Mason, as well as maybe help some other parents along the way who were going through the same experience. And...I needed an outlet. I have always enjoyed writing, and the minute I started blogging, I began to feel a sense of control and feel like I could understand myself and this situation better.

With that said, this blog will never contain aspects of my personal life, other than what it is like being a mom with an autistic child. That is it. There will never be any other personal information found here.

I hope everyone who seeks out this blog is here for their love of Mason, has an interest in learning about autism, or if you are a stranger looking for support, I will always be here.

This blog is for Mason and for those who love him and it will never mention or be about anyone else.



Saturday, April 2, 2016

Apples, Pizza, and Uranus

Mason started feeding therapy a few weeks ago at an outpatient facility.





His diet has dwindled down to basically cereal and snack food. When I tell people this, it is like they don't believe me.

"Oh but does he eat pizza?"

"Um...no. Basically just cereal or anything that has a crunchy texture"

"What about chicken nuggets?"

"Um...like I said-he just eats cereal"

"oh but does he like cookies and ice cream?"

"No"

"Candy?"

"No Candy."

"You should give him a smoothie filled with veggies and fruits"

My kid is 5. You don't think I thought of that idea when he was 2,3,or 4?

One time I even tried baking kale to make it crunchy so he would eat it.

Nope.

Seriously, I have tried everything anyone could ever think of.

His diet was not always like this-as a baby and up until he was about 2, he ate EVERYTHING. Even avocados. Eggs, bananas, pasta. You name it.

He was a great eater.

Gradually as he got older, his diet became worse and worse but I never really was concerned because as one food left, he still was eating other things that were nutritious.

Then it was like one day I woke up, and he didn't eat anything.

Even last summer, he was still eating jelly sandwiches and apple slices but no they have been eliminated from his diet too.

So anyway-one of the moms at his school told me about this outpatient program and said at the end, her son was eating broccoli and some other veggies. That sounded great to me!

I scheduled the evaluation (another evaluation-UGH) and Mason qualified for a 12 week program where he works with a speech therapist.

During the first session, we had a long discussion about Mason's eating habits and decided to take a sensory approach to try to get him to not feel threatened (as they put it) by new foods.

(I did kind of giggle when the speech therapist referred to apple sauce as "threatening".)

Our goal for the end of the 12 weeks is to get Mason eating apples again, and to get him to try pizza. I picked pizza and apples because I feel like those are easy foods for a kid to eat. I mean I would love if he ate shrimp scampi and asparagus but I felt like we needed to take small steps.

So what we do now before eating is have Mason do some exercises to "wake up" the senses in his mouth. We sing a little song together and we both take a wet face cloth and pat it on our cheeks and lips.

When he is with the therapist, she has him brush his teeth with this special little tooth brush and bite down on this rubber hammer looking thing, which I think I am going to purchase both because he really seems to like the sensory input.

During the 2nd and 3rd session, we made a pizza.

Mason opened a container of meatballs and he seriously looked as though someone handed him a bowl of really nasty looking bugs.

I  looked at the meatballs and thought "STOP THREATENING MY CHILD YOU EVIL MEATBALLS!!!"

"No thank you" he said and closed the container and pushed it away.

We were not going to force him to do anything, so the speech therapist started cutting the meatballs and putting them on the pizza.

Mason was interested and wanted to try too, which was great and eventually by the end of the session. he was cutting them with a fork and putting them on the pizza.

He did look unsure but he did it.

He also did not freak out touching cheese (I have no idea why cheese makes him freak out but remind me one day to blog about when the sweet old lady at Shoprite thought it would be nice to hand Mason a slice of cheese)

So anyway-that is just a little bit of information in regards to what feeding therapy is like.

Here is a video of Mason not paying attention while we "cook" an apple.

Looking at an apple

Here is a picture of Mason in the waiting room, looking at a mural of all the planets.



Now...I seriously have no idea how Mason knows all of the names of each planet. I wasn't sure if he was reading the names or if he knew by the way they looked, but he was very excited to see this mural.

The one planet he kept getting stuck on was Uranus.

Now...have you ever had to say Uranus out loud? As you probably know, it sounds like you are saying "your anus" which is totally uncomfortable...especially in a quiet waiting room of other people.

He went through every planet-Mercury, Earth, Mars, etc....

He paused.

"Mommy...what is that one?"

"Uranus" I said very quietly.

"WHAT MOMMY??"

"Uranus"  I said again.

Why was this making me so uncomfortable? And why couldn't he ask me about  Neptune? What about Pluto? It's Mickey's dogs name. Why can't we talk about that one?

Seriously...who the fuck named this planet?

He kept asking me to say Uranus and by the 10th time, I was trying so hard not to bust out laughing because this was so funny to me.

So...everyone in the waiting room heard me say "Uranus" like 10 times. I have no idea if anyone found the humor in this that I did but finally when the speech therapist came to get Mason, I was trying to hold in giggles as if I were a little kid.

That was my exciting day in Feeding Therapy yesterday.

Hopefully in the future, no one ever asks me about Uranus.









Saturday, March 26, 2016

Updates, Videos, Pictures (boring title, I know)


Life has been pretty busy! I noticed my blog was getting a lot of hits this month, so I decided an update was in order!! 😀

Mason is doing really great and I am so thankful. I really cannot believe he will be starting kindergarten in the fall.

I remember when he was first diagnosed on the autism spectrum, the neuropsychologist told me there was a good chance he would be mainstreamed for kindergarten. I clung to that comment initially, hoping all of this would just end by the time Mason was 5.

Now...it is so different. I don't care if he is in a special needs program-The most important thing to me is that he is supported in school in whatever way he needs to be in order to become successful as an adult.

He has one more year left (kindergarten) at his private school before he starts in the public school system. I am keeping my fingers crossed that he continues to make huge strides developmentally this upcoming school year,  and when he enters 1st grade in the fall of 2017, he has all the tools he needs to be a successful as he is capable of being.

I don't want to have regrets. I don't want to look back and wish I had done something different for him. So far, I think I am on that path. It is what is most important to me.

Going through this has emotionally put me through the ringer and finally...FINALLY...I feel like I can sit back and enjoy watching Mason grow and develop for now. I know there will be more challenges to face, but at this time I am choosing not to worry about it now since things seem ok.

Anyway-some updates on Mason...

He took a month to potty train and that was it. It is done. This was my biggest worry and it is like...he has been doing it his whole life. I am seriously relieved! I had set a goal to have him potty trained by fall 2016 and it was accomplished almost a whole year earlier.

And he is not potty trained like I put him in underwear and he still has accidents or I have to consistently initiate taking him to the bathroom. He goes just like any other 5 year old and somehow he is night trained too. I was so scared about sending him to school in a diaper at 5 years old and how other kids would react to seeing him. I didn't want him to go through that. So when I tell you this is such a huge weight off my shoulders..well...it is indescribable.

Mason is FUNNY. He is actually hilarious. He loves making people laugh and making up "jokes:. It seriously cracks me up. He is so friendly too-maybe a bit too friendly.

A few weeks ago, a man was walking his dog in my neighborhood and Mason yelled to him.

"Hey! What is your name?"

The man said his name.

"Want to come to my mom's house later?"

OMG I was so embarrassed and laughing my ass off at the same time.

No Mr. Scary Man-please don't come to my house later.

He asks everyone what their name is and then says "Hi I am Mason"

It is all so innocent and he just really doesn't understand that people can be mean and cruel.

Here is his school picture-I LOVE it. He looks so happy and he really is like this all of the time-I think this picture perfectly shows his personality.


Here are a few videos. The first video is all of us singing "Happy Birthday" at his birthday party. Now...I know this does not seem like a big deal, but if you knew the history of "Happy Birthday" it was actually a huge moment for Mason.

Ever since Mason was about 1.5 years old, the song Happy Birthday for some reason triggered something inside of him. He would scream when he heard it. I would have to take him out of the room he was in. He became anxious and looked like people were torturing him. It wasn't just when it was sung to him...it was when it was sung to anyone. On his 3rd birthday I just figured we would never sing to him. I removed him in situations where it was sung to other people.

Throughout all this time, his school worked with him to become more comfortable when in the presence of "Happy Birthday"

At first, it just didn't seem like a big deal to me. I felt we had so much to work on, who the fuck cared about Happy Birthday.

But the way the Dr at his school put it was this- he is going to hear Happy Birthday for the rest of his life. There are going to be times in school and just in life where people sing it. If we can get this to be one less thing that causes him anxiety, then it will be nothing but a benefit for him in the long run. When he is an adult, I am not going to be able to carry him out of a room.

So...for three years the therapists at his school worked on "Happy Birthday" tolerance- to try and get him to feel comfortable when the song was sung. This part of his program started when he was 2 years old.

On his 5th birthday a few weeks ago, it was the first time he sat through Happy Birthday and smiled and blew out his candles. He did look a bit unsure- and in the beginning looked at me for reassurance it was ok and believe me if I ever thought he was in distress I would have stopped it. I gave him a squeeze and hopefully it was what he needed. Below is what happened.

Singing Happy Birthday

There were tears of happiness-everyone was so happy! I was so happy it was an enjoyable experience for Mason and not anxiety ridden filled with screaming as it had been in the past.

Here is another video of him imitating Chewbacca who he informed me is his favorite Star Wars character.

Chewbacca

Mason is really great at basketball-he almost never misses. Not that I know a lot about basketball, but his shooting and dribbling skills seem impressive to me for a 5 year old.

Playing Basketball UPDATE- posted the wrong video I'll fix later



Here is me doing a flip on a trampoline at Mason's birthday party. Just wanted to give a shout out to myself for being almost 39 and still able to do a flip. I think I possibly had more fun at Mason's birthday party than all the other kids.

Flipping

And finally, here are a few pictures to share that capture our life together.

I couldn't be more proud to be his mommy!












Friday, February 26, 2016

Birthday Talk

Mason is about to turn 5.

When I started this blog, it was 3 months before his 2nd birthday.

DANG. Time sure goes by fast!!!

Here is a recent video of Mason talking about his birthday. I keep watching it over and over.

Birthday Talk

I cannot believe how he is communicating and grasping concepts that a year ago, I thought would never happen.

Seriously-on his 4th birthday, I just figured he was not going to ever understand a birthday. Yet here we are a year later.

It is so great to be able to have conversations with him.











Tuesday, January 26, 2016

Just Get it Done, Man

I would say a year and a half ago I really could not guess as to where Mason was on the autism spectrum. When he was about to turn 3, he was evaluated by the public school district and scored delayed in most areas of development. This result was the same as when he was evaluated at 21 months at his autism screening, and same as when he was evaluated by early intervention when he was 17 months.

Now I just want to take the time to explain what "delay" means because...well...I actually didn't know when all of this first started.

A child can be "below average" but that is not considered a delay. When a child is referred to as "delayed" that means they are below "below average".

"Below average" doesn't get you early intervention. "Delayed" does.

So...as you can see, having a delay in an area of development doesn't simply mean they are a bit behind. It is pretty serious. I don't actually know where I am going with this other than so many times, people have said to me "Oh, he is just delayed". DELAY IS BAD PEOPLE!!!

He had a cognitive delay and a delay in self help skills. That scared the crap out of me even more than his language (receptive and expressive) delay (which was at a 9 month level at 21 months).

I am no expert, but I am starting to think the cognitive delay was because he was in the negative percentile for language skills.

How could he show problem solving/thinking skills if he had no verbal or non verbal communication?

Mason is REALLY smart. He knew all of his uppercase and lowercase letters before he was 2-no one taught him. He could say the alphabet phonetically as well as backwards when he was 2.5. But he couldn't speak a sentence. Again, no one taught him.

He randomly counted to 100 one time when he was with me. His teachers at school thought he could only could to 31 lol.

He understood math and the concept of numbers-it was not just rote memorization. He could count 3 objects and knew if you put two more objects next to them, it would create 5.

So knowing all of this when he was 3, I just couldn't really believe that he actually did have a cognitive delay.

So anyway-I don't know how I feel about these tests. When Mason was 3 the tests were indicating that he could  not problem solve or think...and I was bugging the fuck out about it.

He is about t turn 5 and I would LOVE to see what his score is now. We didn't "train" him or any shit like that-he just developed communication skills and is now able to show us all what he is capable of.

He will continue to go to his Special Needs private school for Kindergarten-he really still needs his own personal aide and there is now way the public school would ever approve that type of 1:1 environment for him.

I remember when he was 21 months old and I first was told he was autistic. The Neuropsychologist said to me "He will most likely be mainstreamed in a regular kindergarten"

I seriously clung to that shit like it was...uh...my job. (I was totally going to make an inappropriate joke here but decided not to)

I wanted him in a regular kindergarten class. I I I Me Me Me.

It is 3 years later and I am totally happy keeping him in his special needs program. He will be integrated into a regular kindergarten class for some of the day (same as he is now in pre-k), but he NEEDS the 1:1 aide, he needs the therapy, he still needs to develop listening/coping/communication skills that are on par with his peers.

I feel like there is still so much more to do before I just send him off to public school. t I think with one more year under his belt at his current school,  he will really be in great shape for 1st grade.

I am so thankful his school goes to kindergarten, I actually wish he could go there forever.

Not sure really what I am trying to post here other than I just think it is very important to acknowledge a child's needs before what the parents wishes aret-whether it is admitting they are delayed to accepting that they are in a special needs program.

Too many people don't want to admit their child needs help and it is pretty sad.

And I just want to add that I am not patting myself on the back. I want to  advocate for these kids.

If there is an issue, it will always be there.

Don't be dumb about it.

I am thankful that I have no regrets and to anyone who is reading that is on the fence...just get it done, man.








Sunday, January 10, 2016

3 years later...

I just wanted to post a quick update. It has been 3 years since Mason was diagnosed on the autism spectrum, and I can say his progress is more than I could have ever hoped for.

When he was first diagnosed, all I thought about was a "cure". It drove me crazy. All I thought about was getting the most therapy possible in the "window" of opportunity before I ran out of time. It turned me into a crazy mad woman.

It took me about 2 years to figure out that he doesn't need to be cured-he just needs my help. And that is what I do.

Mason is autistic and he always will be. And I love him for who he is. He is super quirky, funny, smart, loving and a joy to be around.

He makes everyone in the room smile.

Because of early intervention, he is thriving.

He talks...we can have little conversations. He is starting to tell me about his day at school.

He has lots of interests-Star Wars is the big thing now.

He is FUNNY. He has his own little personality.

We just started potty training and he is doing GREAT!!! I have not changed a diaper in over a week. He needed to do it in his own time.

He can read, he can count to 100-and it is not rote either. He understands the concepts of counting and adding.

This year as he approached 5 (he will be 5 in March) he began to understand the concept of holidays and birthdays.

Christmas went better than I could have imagined- he was so excited for Santa and so excited to open gifts. (I will blog about it later-it was great!!!)

He likes to sing and listen to music-John Mayer is his favorite artist. (That shit has nothing to do with me)

He likes to turn on fans and lights, Sometimes he repeats phrases over and over. He is a bit socially awkward. He flaps his arms when he is excited, and he spins objects when he is tired.

He thrives on routine. Sometimes he needs visual schedules,

Everything that I have mentioned is what makes me love him so much.

Mason is autistic but it doesn't make him "less than,"

It just makes him...Mason.

Every child is different. Every child is on a different place on the spectrum-same as neurotypical kids on the neurotypicalspectrum.

This is my little boy. I am so proud of him!

Christmas Eve