First Day of Kindergarten

The first day of school! Ahhh! I was a nervous wreck.  The handmade sign was complete, the book bag was packed and lunch bag ready with a special little note from mama and a favorite treat. The note would be cute if he knew how to read it. I did it anyway, confident he would be able to sound it out and figure out the "I love you" note. I was ready but there was this lingering feeling of worry. 

The night before N started talking about school and how he was scared of the other kids making fun of him or not liking him. "Why do you think you are different?" I asked him. He responded. "Because I'm different. I'm not like other kids. "It had never occurred to me that he would be so self aware or self conscious enough to feel this way only at the age of 5. My response "N there is nothing wrong with different. Different is what makes us all so very special and if we were all the same the world would be a very boring place. You just remember to be a kind person and respect others. Just be you and the kids that are right for you will be your friend. You'll see." I mean what was I supposed to say to him? I was nervous more then ever now. Not just for the first day but for the entire school year.

Nickelodeon Giphy

So as a sign of solidarity,  the entire family gets in the car to take my sweet little baby boy to school. Dad, brother and sister wish him luck and I go in with him. As we go in I ask him if he is okay and he tells me "It's okay mama, I'm not nervous or scared anymore. I'm excited to go to kindergarten." I mean come on, where did my baby go? In an instant my sweet little baby boy was officially a big boy and brave as heck. There was no need to hand hold or coddle him, he had this and he wanted me to know it. Message received. 

After I dropped him off in class, I took a quick glance back to take a picture and walked as fast as I could to the car. Past the Vice Principal who wanted to chat with only a "Can't talk, I'm trying not to cry in front of everyone." She kindly said "Don't worry mom you got this. He's got this! We will take good care of him."  I shouted a quick "thanks" and cried when I arrived in the car. My first born, my baby was growing up so fast and I had to let him go. I pushed him right out of the nest and he took flight. I'm proud of him. We all are. 

Love you Nono.

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Vacation was a learning experience

Vacation Travels 

My husband and I use to love to travel. With our first son we continued to travel though most trips were kept within the states. Yet, since the twins birth, we as a family have not taken any trips. The past three years have been strictly focused on adjusting to life with multiples and my singleton. We decided it was time to take a vacation.

We headed to Pennsylvania to visit my friends, then to New York and New Jeresy to visit more family and friends. 

The road trip wasn't as bad as I imagined. We stopped five times so we could allow the kids some play time. Making sure the boys got in some sensory time. We went to one park near Madison University that my kids absolutely loved. It was completely made of wood and it was like a jig-saw puzzle and maze in one. Great fun.

Pennsylvania went great. My friends house is pretty big and full of stuff for kids, so my kids were entertained. E seemed to love the staircase. We all must have gone up those stairs at lest 10-15 times. I was so proud of E because despite it being a new place with sort of new faces he adjusted fairly well. He even gave out some hugs and hand holding. If you knew him a year ago,  you would know that this is a huge deal. 

Then came Jersey and seeing grandparents. He loves them and so I know he would be excited to see them. But we didn't give him much time to adjust to new space or place. We dragged him in hotel room, then dragged him back out to take him to a park. I went on the insistence of others but was weary of how he would do. He didn't like the change of car,room,car, stroller. He fought us on that but once we let him play he was happy. He was running from one end to another because it was a great deal of stimuli for him. He was happy and enjoying himself so I let him have his fun. 

The next day was when things went bad for a moment. I thought that we were going to the zoo. I planned mostly quiet and serene activities for kids.  What I wasn't prepared for was the amusement park next to the zoo. It's nothing big just a few rides for kids and a few games. But for E, it must have been a nightmare. Kids screaming, bells going off, the rides making their own specific noises and then the voices, so many. He went on one ride ok, the train. E really liked it but I think it was so exciting for him that it spun him out. We tried the carousel but he wanted no part of it. He wanted to go on a car but he couldn't decide which one he wanted and then refused to be buckled in. "I want red car." I took him to red car but the inside was yellow, "No, I want red car!" Now I was questioning his knowledge of colors. Switching from car to car, finally I got him buckled in, he freaked. I asked them to stop ride. He was wailing and kicking. Scratching at my face and glasses. Even ripped some hair out. That's when I experienced it. I started to see people as if they were talking about us, starring, pointing, perhaps even criticizing. One woman was even bold enough to say "Wow,  looks like you have wild one there. Is he always like that?" Not sure why people feel the need to comment or shame you. She was lucky I was with my kids.  Then E ripped and tore at me again as we tried to leave park. His dad then took over. I broke down in tears. This place, a place most kids would love, was obviously painful, perhaps even tortuous for E. We had to get him out of there. 

I sucked up my tears and jumped back into super mom mode. His dad tried a ride with him but that didn't go well either. I grabbed him and took him out of amusement park. Found a quiet spot and calmed him. He was wound up bad. So I let him walk a bit but he was running and tossing himself on ground. I took him and sat him in the stroller. Hydrated him but he tossed the bottle around instead. I let him. Even made it into a bit of a silly game. We started to move. Things got quieter and calmer. He was finally silent. We looked at animals and eventually he fell asleep. It was all to much for him, exhausted by his outburst he slept. Kind of like how a computer has to reboot after a system crash. 

After that,  the remainder of the trip went fairly easy. E had a few small outburst but nothing like the one he had at the Flushing Park. My new mantra "Face, Space and Place." Give my son E enough time to adjust to people even if he already knows them. Don't allow people to come at him fast, loud or touch him. And be sure to find a quiet place were ever we go. 

I recently watched this video from The National Autistic Society and I found it to be very insightful. It gives the Autistic perspective of the world around them. Whether you know or don't think you know anyone with Autism you should watch this. I watched it in a dark room with headphones and held the smart phone close to my eyes to really try to give myself the feel of the video. Try it, see if you can make it to the end comfortably. It changed the way I see everything now. Click HERE for video

NOTE OF THANKS:

I want to thank the staff at the Fantasy Forest Flushing Meadow Carousel and Amusement Park. They gave me a red band to wear that noted to staff that we had a special needs child that would require more time to adjust to rides, require a gentle approach and made them alert incase of wondering/dangers. They were super with E. Even when he was screaming and fighting,  they remained calm and supportive of us. Though it was a nightmare for E, my other two kids loved it. I appreciated the care they showed us. 

Now all I need is a vacation from my vacation. We arrived home and happy but emotionally and physically drained. It will be awhile before we go on any vacations again. 

Food Aversions or a.k.a. Picky Eaters

Toe so good

Moms always complain about how their kids are picky eaters, it can be so frustrating and concerning.  You want your child to eat and eat healthy choices but picky eaters have a different plan. A picky eater with Sensory Processing Disorder (SPD) and or Autism (ASD) can be even more troubling.

My son is probably the pickiest eater I have ever dealt with. Honestly, most days I think he would sooner eat his own toes then eat meatballs or mac and cheese. Seriously, I have seen him eat a crayon no problem but roasted chicken, no can do. In order for E to eat something, especially a new food, he has to allow all his senses to approve the food item before he eats it. Its a process that he takes time with.

Here are the steps E goes takes before eating something.

Step 1: Looks at food
He stares at it from a few different angles. At this point, if he doesn't like the way it looks, it's on the floor or he starts screaming. He use to freak out over diced carrots.

Step 2: Touches food
If we manage to get to step two, he gages feel, temperature and texture. E tends to like food that are either really hot or cold and in the white or beige family of foods to touch. It will end up on floor or it passes to next step.

Step 3: Smell
So this is where E simply smells the food. Disapproves floor, approves next step.

Step 4: Taste
This is where my son will decide if he will bite the food. E takes a lick or simply touches his lip or tongue to the food. If it passes the test he will take a small bite. I mean small, bird size. Often the food ends up on the floor because he took so long to get to step 4 that the temperature is no longer how he wants it or he doesn't like the texture of the food item when chewed.

Right now E lives on Greek Yogurt (Banana only), bananas, smoothies with veggies snuck in, Keifer shakes (Strawberry only), almond milk, bread untoasted with Honey, bread with Nutella and Chocolate chip granola bars. Just recently he has stopped eating pizza, has tried chicken nuggets but they must be hot and banana with Nutella. He seems to like his things on the sweeter side. It's fairly healthy but I still feel like I could get him to eat more veggies and solid proteins. Perhaps that is every moms plight.

I long for the day that I can make a pot of Mac and Cheese, place it in front of my son and he eats it. Maybe not even all of it but a bite or two. In the meantime, we test out foods and hope for the best.

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Building a Strong Team

For the past year, my son was already receiving Early Intervention and we built a team around him that is strong. Here's why I think having a strong team is so important not just for the child but for the entire family. 

Let me first explain Early Intervention. Early intervention includes but is not limited to the following services:

- Provides families with a plan
- Supports services and resources for children that enhance daily opportunities for learning
- Provides visits in settings where a child would be if he/she did not have developmental delay/disabilities "Natural Environment"
- Special instruction/family training/support
- Organizing nursing services, social work services, nutrition services (food therapy)
- Assistive technology devices and services
- Physical therapy (PT)
- Occupational therapy (OT)
- Speech Language Pathology (SLP).

In a nutshell, the Early Interventionist (EI) assists in meeting the needs of the child as well as the needs of the family.

Back in July of 2014, I had my son first evaluated to see if he qualified for Early Intervention through BabyNet (a government organization that helps with special needs children). When I was told that he did qualify for further evaluation. They sent us to another place where I had to fill out some paperwork on him and sit and answer questions regarding his behavior. They sat us in a room, asked him to tend to a few tasks while also doing things around him like blowing bubbles or making noise. Thirty minutes later, we had a starting point. It came back that he might be autistic so we very quickly started the process to get him the help he needed. 

First I lined up his Early Interventionist (E.I.) to assist and support me in getting all the therapies he would need. We chose Carolina Behavior and Beyond because they came with great referrals and the founder has a very personal understanding and relationship with special needs. Through their evaluation, we new he needed Speech Therapy (S.T.), Occupational Therapy (O.T.). Through the BabyNet evaluation we knew he would need ABA Therapy (Applied Behavior Analysis is the application of the principles of learning and motivation from Behavior Analysis.) 

We were fortunate to get his Speech Therapy through Columbia Speaks Speech Therapy in just a few weeks. His ABA through Early Autism Project which took about two months and Occupational Therapy took about three months. Occupational therapy was the hardest to find. One because the surrounding area doesn't have enough Occupational Therapist and two, not enough of the OT's are trained well in Sensory Processing Integration.  His OT started out at Palmetto Health Orthopedic Therapy and all though they tried to help him there, I just didn't feel as though it was working out. He wasn't getting much accomplished. So when the wait list opened up at a new location, I jumped on it and he now deals with SPROUT Pediatrics for Occupational Therapy. Here I feel they are more knowledgable on the subject as they already deal with kids with Autism and or Sensory Processing Disorder on a regular basis as well as having a personal connection. Though I would like to have him receive Food Therapy for his food aversions, I am more focused on getting him talking, attending to his tasks and connecting so I try my best at home on my own but it will come in time.

It was important to me as a mother to know that the team I surrounded my son with are people who truly care about him first. I couldn't be happier now. It isn't perfect (what is?), we have had some bumps in the road but I feel supported and my son has been showing great strides in improving his speech, connection to us and the world around him. It's been only ten months since he has been receiving all of his therapies and he his speaking more and more., Engaging with us and learning more every day. He still has a long way to go but he has a strong team and I am confident he is going to be okay. 

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Diagnosis Day

You prepare yourself for D-day. You suspect it, you convince yourself that the worse case scenario is still better then most. Convince yourself that diagnosis will help. You say the word/(s) regularly to reduce shock value. You do your best to prepare but the news is coming and your still not sure if your ready. Then you hear the words "I summed up his ADOS among other things with my notes...." What seems like longest pause ever. " And well, it looks like your son did test for Autism." Crash! It's reality.

To some extent it was a huge relief but also a big let down. We heard a lot of mights, maybes and ifs but nothing concrete. More then anything, I was relieved because we finally knew what he was dealing with. Yet the mom in me, the irrational part of me, wanted to cry, wail because how could my "perfect" boy have Autism. 

You go through all the scenarios even while the doctor is spitting information at you.  I'm thinking, I just didn't take enough prenatal vitamins, I was to old, on to much bed rest, not enough rest, stress, twins, maybe the IUI drugs, etc.  Words and thoughts swirling in my head like a cyclone. What could I have done differently? I tune back in to hear "tested low to medium." That's good, right? "Yes, that's good." 

Then Doctor C. begins to discuss game plans for him. Many which we already have placed, speech therapy, occupational therapy, ABA(Autism Behavioral Analysis), school. She reassures me that he will be more then fine. That he is very bright and has come along way in only 10 months of early intervention. I remind myself that only 10 months ago he had stopped talking all together, wouldn't look at me or even let me hold him gently. I knew even then, I knew but now I know. 

To some aspect I guess a mom always knows but denial can be powerful. Even as I started him down this process, I fought my denial in search of answers and I got what I wanted, an answer. The answer is Autism. 

Of course, now I have a million new questions and a new search for answers but the most important answer I have is that my son will be okay. My son may be living with Autism but he is not Autism. He is perfection, beauty, brilliance, lively, happy, unique and a loved little boy.

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