A POST SIX MONTHS IN THE MAKING...

I know it's been awhile since I've posted- but I'm back with some amazing news to share. So I hope this makes up for slacking a bit here.

See, my little bug has a more severe case of autism than my little butterfly does. He will be four years old in the beginning of February, and he is still considered "non-verbal". He uses speech, but usually only when he's repeating someone. That is why his video is so amazing.

He's leading the charge!!!

Nikolas counting from one to ten (and throwing an adorable twelve in there at the end).

I titled this post "Six Months in the Making" because we've been working on letters and numbers for the better part of the last six months. For the longest time, he would only repeat the numbers after I, or his teachers, said it. Well, last night, while singing our "number song", he started taking the lead. Thankfully, I had my phone handy and managed to capture the whole glorious experience on video!

I'm not sure if words can express just how proud/happy/excited/thrilled I was/am to share this today!

That face makes my heart smile!

Stay tuned: the next few posts will include another Arts & Crafts post, an updated Graphics Share (since Autism Awareness Month/Day is coming soon), an edible science experiment post and, as usual, updates on the trials, rewards, tribulations and thrills of living life the autism way! 

As always, thanks for reading!

A Quick Update

Hello everyone! I want to apologize for the long gaps between posts. Life catches up to you sometimes no matter how ‘organized’ you think you are. With school, therapy and all these ‘No School’ days, things just get very hectic. 

Anyway, I just wanted to post and give those wondering a quick update on life in the “Wackadoodle” house hold. 

As some of you know, the little Butterfly is officially spreading her wings this fall and is now registered for KINDERGARTEN. We were told when she was two, and first started therapy, that there was a chance she wouldn’t be able to mainstream, but guess what, like most of her goals, she’s reached them and surpassed them! 

When we went for registration, she was the most excited I’ve ever seen her and so proud to stand on the steps of her future “big school” as she calls it. 

She will be a part of the special needs class, which includes your average number of students, but with more teachers and more aides to assist the kids. She’ll still ride the smaller bus, as we’re not really comfortable with her riding the ‘big kid bus’, that consists of kids from kindergarten to 8th grade. She’ll still have a one on one aide in class since she’s still quite the escape artist and still likes to sneak away and into other classrooms. 

Outside of school, we continue to struggle with sleep issues and the newest thing we’re trying to counteract is her behavior. She’s a headstrong little girl, but sometimes that gets in the way of following directions. 

Little Bug has been making small steps forward and will soon be officially evaluated by the Kirsch Center for an official autism diagnosis. This will help us narrow down what therapies will best benefit him and, with an official diagnosis, he’ll qualify for therapies that he can’t get right now. 

In other news, he’s learning sign language (as are we) which is a very slow process. His attention span isn’t really set for learning signs, but he’s picked up on the signs for ‘more’, ‘food’ and ‘drink’. You wouldn’t believe how much those three little signs have helped. 

Unfortunately, we’re noticing more and more that he’s much more behind than Bella was at this stage in the game. He has still said no real words, although he’s babbling much more than he used to. He has the same sleep issues and food issues that she did, but unlike Bella, he’s a very solitary child. When Bella would feel overwhelmed, she wanted reassurance in the form of a hug, or being held. Nikolas on the other hand, prefers to be alone, in this room with his music box. To an outside party, it would look as though he’s being neglected, or ignored, but sometimes, children with autism just need to be ‘away’. Alone. In the quiet, comfort of their own space. Niko’s room is set up with minimal items. His bed, a few toys and most importantly, his music box. He responds so well to music, that even his teachers and therapists have mentioned that music therapy seems a fantastic option for him when he begins therapy full time. 

As always, we take things a day at a time. Having two kids on the autism spectrum isn't exactly a walk in the park, bu you do what you have to for your kids. I'm so proud of the progress that Bella has made and I have high hopes for Nikolas as he continues his therapy. 

Step 1: The In-Home Evaluation

In Home Evaluation

The great thing about an in-home visit is that they get to see your child behave the way they normally would, in their own home and in their own familiar environment.

Nikolas had his in-home evaluation today and we were visited by an occupational, physical and speech therapist. The entire evaluation lasted about an hour and a half.

They tested an array of things:

Fine and gross motor skills

Adaptive behavior

Social behavior

Speech and communication skills

Language skills and

Sensory issues

Not surprisingly, Nikolas has his strong points, which are very strong, and he has his weak points, which unfortunately, are very weak. 

The easiest way to sum it all up is just to say that anything over a 1.5 is considered ‘significantly’ behind. Nikolas scored an average of 2.67 in all but two categories. In adaptive behavior, he scored a 3.0 and in his social skills and behavior he scored a 1.87. 

He was also evaluated for sensory issues. He has no body awareness and doesn’t respond the way most typical children would to sights and sounds. While I’m not surprised by these results, it doesn’t stop me, as a mother, from letting it get to me a little. 

What now?

Well, now, we take the scores he received and send them off to the Kirsch Center, along with the parents questionnaire and the doctors referral. While it’s still going to be a few months before he gets into Kirsch, he will be able to start receiving services from Early Intervention and Kidstart. If it’s anything like Isabella, when she started, then he’ll go for half-days and get a combination of one-on-one therapies with a speech, occupational and physical therapist. 

Again, much like Bella, he was seen as early as he possibly could have been, since most Kidstart programs will only allow a child two years and older to participate. Since Nikolas is turning two just one day shy of three weeks, they’re going to let him start as soon as all the paperwork is filled out and signed. 

If you are concerned that your child, or a child you know may be showing signs of autism or a sensory processing disorder; there are ways to either confirm or ease your worries. 

M-CHAT stands for Modified Checklist for Autism in Toddlers. It’s best used for children over the age of 12 months. While it’s not a definitive testing method, it can give you a better idea of what to look for, how many “red flags” your child is showing and whether or not you should seek assistance. 

Online, interactive M-CHAT test

Early Intervention is a great first step in getting the help your child might need. Early Intervention rules differ from state to state. 

Early Intervention by State

Kidstart/Headstart is an exceptional program that offers services for special needs children as well as neurotypical kids. They have Pre-K and daycare as well as evaluation services and trained therapists. 

The local Kidstart/Headstart program is free for those that qualify and offers services to those who, otherwise, couldn't afford it. Put it this way; the average price, per MONTH for a special needs child who needs speech, occupation and physical therapy daily averages out to about $4,250 per child. Without the services a place like this offers, most children who NEED therapy would never be able to get it. 

Lehman Center/Main Office

5871 Groveland Station Road, Mt. Morris, NY

Main Number (585) 658-4023

Day Care: Ext. 4409

Director's Office: Ext. 4321

Headstart Services by State

The Kirch Developmental Services Center is located inside the Golisano Children's wing of the University of Rochester Medical Center in Rochester, NY. It is one of the only places in Western New York where you can get an official diagnosis for autism. While it might not seem important to have this label for your child, with this diagnosis, your child qualifies for services that otherwise wouldn't be provided. State grants and subsidies as well as SSI and help with at home therapy equipment. Having that diagnosis will also help with things like enforcing the Children with Disabilities Act. For example: A landlord that won't let you keep a therapy/companion animal or tells you that you can't make simple modifications to a home to make your child's quality of life better. 

Since it's the only place that can do this, the waiting list is sometimes very long. 

All in all, today went pretty much exactly the way I thought it would. Niko wooing the ladies with his charming laugh and sweet toothy smile, and the therapist assuring me that they will do everything they can to get him into the services he needs as soon as possible. Unfortunately, the thing you, as a parent, end up doing the most is waiting. So now, we wait.

Ready For Round 2

Ready For Round 2

I’ve decided, that since I started blogging about my experience with Bella after she was diagnosed, that this time around, I’d tell Niko’s story from the very start. It’s not a surprise to me that he has autism. I’ve suspected it since he was six months old.

He wasn’t babbling, or making any noise besides crying. He had limited eye contact and was off in his ‘own world’ most of the time. He would respond to his name, every now and then, but most of the time, it took a loud noise to get his attention. As he got older, I grew more and more convinced that he was autistic. 

Now, he’s almost two and has yet to say his first ‘real words’. He has no communication skills, doesn’t like being held, but unlike Bella, who cried a lot, he’s full of smiles and laughter. Everything makes him laugh, even if we can’t figure out why. 

This time around, I skipped the doctors appointments. Last time, they just kept telling me that ‘she’d grow out of it’ and it added nearly three months onto the time it took to really get her evaluated. So, I went straight to the source, and the only people that can really help Niko; I called the Kirsch Center at Strong hospital and Early Intervention. 

The Kirsch Center has a long waiting list, but while I wait, I know that I can get him into the therapies he needs. From Kirsch, I got the paperwork needed to get him an appointment. I was able to get them to email me the papers I needed; A parents questionnaire, a doctors referral and the early intervention forms. When I called Early Intervention, they were able to send someone out to the house within days to get the process started. 

His official in home evaluation is on the 21st. They’ll be sending out a pediatric pathologist, a physical therapist, speech therapist and an occupational therapist to evaluate him and decide which therapies he’d most benefit from. At this point, I’m pretty sure he’ll qualify and benefit from all three. 

So, for the next few months, I’ll be using the blog to document the process my son will be going through, from the preliminary evaluations to the Kirsch, to his first days of therapy. I’ve seen the amazing progress my daughter has made and I have high hopes that these programs will help my son as well. 

Isabella (on the left) and Nikolas (on the right) were born on the same say, three years and one hour apart. They were the only ones born with hair (and lots of it). As their pictures hang on the wall, most people who see them at the same age can't tell them apart. Sometimes when I go through their baby pictures, I can't even tell them apart. 

Sweet Nikolas will be 2 years old in just under 4 weeks. His smile can light up a room and his laugh is one of the greatest sounds I've ever heard. 

Interview With my (almost) Five Year Old

Me: So, Rayne. Tell me about your sister.

Rayne: Bella is my favorite sister.

Me: Do you remember what I told you Bella has?

Rayne: Yes. Autism. Right?

Me: Yes. Do you know what that is?

Rayne: It makes Bella brain work different than mine and yours and daddy’s.

Me: That’s right.  What’s your favorite thing to do with Bella?

Rayne: Everything. We do everything together, except at school cause we’re not in the same room.

Me: Does Bella ever make you mad?

Rayne: Sometimes when she lays on me when I’m trying to sleep. Sometimes too when she cries.

Me: It makes you mad when she cries?

Rayne: Not mad, sad. I get mad when I can’t figure out what’s wrong.

Me: Mommy and Daddy will figure out what’s wrong. You don’t have to be mad or sad.

Rayne: I know what’s wrong better though. Bella can’t talk but I know what’s wrong.

Me: How do you know?

Rayne: I just do.

Me: Oh, okay….

Rayne: I know when it’s the movie that’s scared her. I know when she needs a drink or when she’s just tired but sometimes there is nothing wrong and she just feels like crying.

Me: What do you do then?

Rayne: Just let her cry. It helps her feel better.

Me: How do you know it helps her feel better?

Rayne: Cause when she’s done crying, she laughs and smiles. You told me that sometimes she gets full and it has to come out, remember?

Me: I do. (I told her that sometimes Bella’s body gets full of emotions and it has to come out so that’s why she has these meltdowns. When she gets all of it out, she feels better.) I’m glad you remember that.

Rayne: Thanks.

Me: Do you think there is something wrong with Bella?

Rayne: Bella is just Bella. (A girl) at school like to spin around like Bella does. Everyone tells her to stop but I just spin around with her. It makes her laugh. (She’s talking about a little girl in her class that has Asperger's Syndrome and her only ‘stim’ is spinning around in circles).

Me: Why do you do that?

Rayne: It makes her feel happy. Some of the other kids just laugh at her, but that’s not nice. If they spun around too (they) would have fun too.

Me: Thank you for being nice to her.

Rayne: You’re supposed to be nice to people, Mommy.

Me: What do you think about you and Bella being in  your own room? (something we've been trying to do for about two years now).

Rayne: No.

Me: Why?

Rayne: I would miss Bella and Bella needs me to stay in the room with her. In case she gets lonely. No. I think I should stay in there.

Me: You know, eventually, you’re going to want your own room.

Rayne: Maybe when I’m old, like you are, you know, like, 59 or something.

Me: Rayne, I’m not 59! I’m 31.

Rayne: Okay, when I’m 31, like you. Then I’ll get my own room and I’ll a husband too, like daddy! (she giggled) and Bella will have the room next to mine.

Me: You want Bella to live with you?

Rayne: Yes. Of course.

Me: What if your husband says no?

Rayne: He wouldn't cause he would love Bella too and if he doesn't love Bella too then he’s not my husband.

Me: You’re a sweet kid you know that?

Rayne: (she blushes) Mommy!

Me: What would you say to someone who makes fun of Bella?

Rayne: Hmmm, I would tell them that my Daddy fights in a cage and that he could beat them up.

Me: Rayne, Daddy’s not going to beat up a kid!

Rayne: Fine. I would tell them that making fun of Bella means that they are the mean one cause Bella would never be mean to them so that’s not fair. If they make fun of someone who can’t talk then they are just mean.

Me: That’s true.

Rayne: Then I’ll have Daddy teach me how to beat them up.

(Having a trained MMA fighter as a husband and father to my children has caused a little bit of an issue. We know this. They've watched their father train and work out and spar. We clearly need to teach her that there is a time and a place for everything. At the same time, I do love her protectiveness and if someone were to physically provoke her or her sister, I can’t say that I wouldn't want them to know how to protect themselves.) 

Me: Any last words?

Rayne: Can I please go watch “Spongebob” now?

Me: Yes you may.

The End.

I have to say that all the warnings I got from doctors about my older child being jealous or acting out did kind of make me nervous at first. I waited and waited for Rayne to act out and rebel but she never did. I waited for her to act like she was angry of the attention her sister received, but she never did that either. In fact, at just shy of five years old, I've seen Rayne display more patience and more care for her sister than most adults. It’s an amazing thing to watch as they bond and grow up together and it’s something that I hope continues as they get older. Rayne seems to have this uncanny ability to know what her sister is thinking and they have this bond that transcends verbal communication. It’s more than any mother can ask for and I consider myself extremely lucky to have such a well rounded, intelligent, sweet and caring little girl. Rayne definitely is something else.