Dilly is 4 years old! The first year of our Autism Journey in review

Hellloooo Blogosphere!

HAPPY AUTISM AWARENESS DAY!!!


My heart is so full of joy, because my beloved Dylan Michael is officially a 4 year old! I feel like the whole world should celebrate with us! Even before his diagnosis, I always said that our family just wasn't complete without Dylan. When he came to us, we knew he was right where he belonged. It was the closure we needed. Get it? We're done making cute babies :)

                                                      Happy 4th Birthday Dylan!
                                             
As always, don't be shy, reply! Love hearing from you guys. I get alot of messages on FB messenger. Sometimes it takes me a few days to get back to you all. I don't always see the messages right away. It would be better to email me. Here's my social media blurb:

FB- Sharon Maynard-Douglas
IG- Shaymaydoug ....also follow my oldest cocoa prince: darien.douglas
Email: maynard1280@gmail.com

I also have snapchat and twitter, but I don't use them regularly enough

                   Funny faces with big brother                             
                                                                                         His cousin is always ready to help blow


Let's go back in time to a year ago. Dylan was in a private general education school. He was screaming, throwing himself onto the floor, flipping furniture, throwing food trays across the room, etc... The list goes on and on. Everytime I picked him up from school, it was something new he had done. His teachers loved him dearly, but they looked exhausted everyday. There were times that I would drop him off, get in my car, and cry because I didn't know what to do. I hated leaving him, and knowing what would happen.

By this time, I had already began to suspect he was on the spectrum. However, I wasn't 100% sure because he had so many great skills! However, with the recent events at his school, there was no denying it. After being denied early intervention services a year prior, I was in the middle of getting him evaluated for preschool special education services. The therapists couldn't believe he didn't qualify for E.I. He had significantly regressed within that year.

                   My cocoa princes 😍😍😍                                                                                                                              It's a mommy/son thing

All I needed was a diagnosis. Why? It makes life easier for when you're demanding services later on. I went to the neurologist, and expected a whole battery of assessments. Instead, she looked at Dylan, requested eye contact (which he didn't give) and confirmed his ASD diagnosis. Felt my world come from beneath me. First off, the bedside manner..seriously! That's not how you tell a parent that their child is on the spectrum.


Of course I had...have all the same concerns as any parent of a child with special needs. What about his quality of life? Will he find love, and have a family? Will he be taken advantage of? Will he get bullied at school? Who will look after him when I'm no longer here? All valid concerns, but I'm trying my best to just take it one day at a time.

The first few months were rocky. Suddenly, I was part of this new community #autismawareness. There isn't any initiation. Your child is diagnosed, and you get to advocating..period! You do whatever you need to do to make sure that your child gets everything he/she is entitled to. 2 weeks after his diagnosis, we were in Autism Awareness Month (April). My head was spinning. Trying to process his diagnosis, and embrace it at the same time. It's an out of body experience. As much as you try to look at your child the same as you did pre diagnosis, it doesn't work that way. I couldn't help but look at him with a sense of hopelessness. Yes, I accept him for who he is. I love him for who he is. However, as parents, we don't go around wishing for special needs babies. Let's be really REAL! We all want neurotypical children. Mostly because the world is a cruel place, and people reject what isn't the norm. We don't want our kids to feel rejected. I take every opportunity to educate those around me about Autism. I even teach my kiddos at work, My hope is to do my part to create a better world for Dylan.

                                                    That forever kind of love

Glows: Dylan has made great strides towards engaging in play with peers his own age. We recently visited a playhouse. Dylan was on a train ride, and spontaneously turned around to face a little girl behind him, and asked " are you having fun?" I nearly fell out! Who knew such a small moment would have such a huge impact on me! I wanted to cry! He even gave semi eye contact. I just can't believe how amazing he is.

Grows: He continues to struggle with regulating his emotions. Still, he has made significant improvement! He still cry/scream/yells when he doesn't get his way. In the past, the outbursts would last 5-10 minutes. These days, it's a brief scream, followed him reminding himself to use his words("use your words, Dylan")! It's so cute!

We're also participating in an open autism study in collaboration with Montefiore Hospital. He's given an enzyme that is supposed to decrease behaviors associated with Autism. I have definitely seen an improvement. However, I don't know if it's because of the enzyme, his therapy (OT, PT, Speech), or a combination of both. All I know is that #teamdilly is really coming through for my baby boy. He is so loved. I especially love when random strangers send me private messages about different programs that would be beneficial to Dylan. Thank you all! It's with these small gestures that I continue to have the courage to share my heart with all of you!

                    We just love seeing Dilly at gymnastics. He has made so much progress.

With knowledge comes responsibility. Autism Awareness month is the perfect time to spread some knowledge on Autism to friends/family/coworkers, etc... With 1 in 68 children being diagnosed with Autism, the chances of knowing someone on the spectrum is extremely high. Let's work together to make a better world for individuals on the spectrum!

#autismawareness
#liub
#teamdilly


Sharon

 

Living our new normal life

Hello Blogosphere!

Its been awhile since my last blog. I do apologize. I had an amazing summer, and I was off enjoying my family. Fall has been a whirlwind. I'm sure you all can relate! Anywho, I'm back now, and ready to catch you all up on all things Dylan.

Don't be shy, reply! I love getting questions/comments from all of you
Email: maynard1280@gmail.com
FB- Sharon Maynard-Douglas
IG: shaymaydoug

A few days ago, Dilly turned 3 and a half. This also reminded me that it's also been 6 months since his official ASD diagnosis. I can't believe it's only been 6 months! In such a short period of time, so much has happened. I've had to become an ASD expert, in order to better understand my son. I'm far from an expert, but I am reading research, help books, and chatting with other moms of children with ASD. It's often been extremely overwhelming, and I just want to thank the Autism support family for reaching out and being there for the highs and lows. Cheers to many more to come!

Our favorite spot to watch the sunset. It's our Friday tradition

How cute is my Dilly. We went to California for Darien's 8th Birthday, and one of my besties got married!

 Over the Summer, Dylan did the summer program at his new school. If you follow me on FB, you know that I was upset that they didn't allow my hubby to ride the small yellow bus with him. He definitely could have squeezed in next to his car seat! This mama was anxious! Fortunately, Dilly was not! He waved good-bye and never looked back. Broke my heart! However, I was so happy to see him adjust so well to his new schedule. Up until that point, I questioned whether or not I was making the right decision in putting him into a special needs preschool. It's the fear of him mimicking more extreme behaviors, and possibly regressing. Coming from a general education private school, it would be a huge change in setting.

Birthday fun at Disneyland! How cute are my men! Darien had the best birthday, and Disney really treated Dilly like a Prince. They were so accommodating. It was a stress free day! Thanks, Disney!

I have to admit, the west coast life was pretty sweet! However, we're New Yawkas! It runs through our veins

Flying with Dylan is super tricky. As soon as we entered the plane, I let the stewardess know that Dilly had Autism, and that he has an alarming high pitch scream. Shout out to Delta. All of the flight attendants stopped by my seat throughout the flight to check on us, and offer us their assistance. I felt like a VIP.  The 6 hour flight home was not the best. I'm so thankful for my hubby. He had to walk Dilly up and down the aisles several times. It was a turbulent flight, so we had to stay seated for most of the flight. Dilly wanted to stand, and he couldn't. We did the best we could. We did see a few exasperated faces, as we stood outside the plane waiting for our stroller. Hey, can't please everyone :) 

Now let me tell you why moving him to his new school setting was the best decision for US!

a. Language enriched environment: His new school is a breeding center for all things language. Immediately after starting his new school, his language skills soared! We got comments/inquiries from so many people about his growth.


b. He wasn't the outsider anymore: I can't tell you how many times I picked him up from his last school only to find out he screamed all day...or tossed over a table..snatched from other kids...threw his lunch across the room. I can't tell you how many times I cried in my car on the way home because I didn't know how to make it better. I felt sad for the teachers because they aren't trained to handle special needs children. (Side note: His teachers were amazing! They were willing to try anything that would help Dylan. They truly loved him, and saw him for who he is. I owe them everything!). It was getting worse, and there was nothing I could do. When he went for his interview at his new school, I was praying that he would behave. Of course he didn't! When he melted down, it was ok. The trained TA's knew exactly what to do. I was amazed, and I could already feel tension release from my shoulders. I just had to make sure that he got into the program. (Spoiler Alert: He did!) At his new school. I communicate with his teachers and therapists via communication notebooks, emails, phone calls,and texts. When they mention his behaviors, it's so that I am aware of how they are targeting his weak areas. It's an entirely different approach. It makes all the difference when your child is in a therapeutic environment. Since he's started at his new school, I've learned so much from the school staff. It's truly been a blessing!

c. Smaller class setting: Need I say more? Show a child who wouldn't benefit from a smaller classroom setting! In a perfect world, all of our children would have a smaller setting with a ton of individualized attention.

d. All of his related services are in-house: He receives Physical, Occupational, and Speech therapy at his school. No more running from one clinic to the next to get what he needs! #winning

Apple Picking Fun in NJ. We love wknd trips. Dilly was a terror, but we later found out he had a stomach virus...which eventually spread throughout our entire family! We were out of commission for an entire week!

Disney on Ice! Wasn't the greatest, but he loved the Finding Dory, and Inside Out stories

Fall fun in NY :)

Home life has been...interesting! Watching his Autism quirks rear their heads. He is officially in the ' line everything up' phase. He has about 12 plush animals that he carries around the house. When lining them up, if one doesn't sit upright, he loses his mind! It's the funniest/most annoying thing ever! He also cannot tolerate hang nails. He can not wear a long sleeve shirt if it's rolled up. He cannot wear a jacket/coat unless it's zipped all the way up to the top. Once he begins singing a song, he has to see it through to the end. I could go on and on. For the most part, we take it all in stride. It's not till the end of the day that i realize just how time consuming, and exhausting it is. I couldn't even imagine having another child (not that I want one!). Being the very best mom to my boys is a full time job......

.......Which is why I'm so blessed to have my hubby (aka baby daddy). He makes sure that we make time for eachother. I get so wrapped up in my kids, and I forget that we were here first! Before my cocoababies, there was Hubby, and I. #blacklovecreatedourcocoababies I just love the little things he does for me. Hop in my car,and gas tank is filled. After a long day with the boys, I come home and dinner is made, with wine chilling in the fridge. Just having someone who you can lean on when you are feeling at your absolute worse. He always makes time to talk to me when I'm upset. I love that about him. If you're reading this, u da besssssssss, hubby!

I'll close out this blog with a PSA...

When a parent tells you that their child has autsim, please do not put on a pitiful face, and say "awww". It's NOT a death sentence. Our kids are amazing, and you would be so lucky to know them. I have had friends do this to me. Super annoying. I really want to say that "my child is a genius, who lacks basic communication skills because of Autism..what's your child's excuse?". Sorry, not Sorry!

Instead try something like:

" Thanks for informing me. You're a great mom/dad/guardian. If you ever need some extra help, I'm here for you."

If it's a stranger, then try...

" I don't know much about Autism. What exactly does it mean?"

We don't care about your brother's wife's sister's son who has Autism. That doesn't mean we have a connection. It's actually quite insulting to think that you have any idea what we go through because some distant relative is also on the spectrum.

Until the next time!

Sharon