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I’m dreaming of….

becha’ thought I was going to say “A WHITE CHRISTMAS!”

These days, I could care less about those things. Perspective has changed over the last few years and while a white Christmas morning would be serene and peaceful, my life is anything but!

I mean, how can anyone that has children have quiet? Unless its nap time, which it totally is right now and I’m quietly listening to instrumental Christmas music with my Christmas cookie candle Ben got me for Christmas (Yes, early!) and watching the snow come down.

This past month has been wrapping up the end of year for so many things. I honestly don’t even have my Christmas tree up, but with as sensory as Benny is, everything will most likely go in his mouth so, we’ll see. Haha!

I know everyone is our house is ready for the year to be over, heck, I know I was back when I had to have my gallbladder taken out. I felt like I missed so much of the Summer getting back on the mend. What a bummer.

BUT…here we are. Less than a month away from having a 3-year-old. WHAAA?! Wait. Seriously, I’m half-panicking. So much going on and to do. People have asked me if I have Benny’s birthday plans ready, let’s be honest, I’ve been doing good to get up in the morning and make sure we’re ready for the day and I’m super proud of that! Haha!

Facts are: Benny is about to age out of First Steps. I’m dying over that. (Not really…just being dramatic!) I remember when we went to his pediatrician and he finally mentioned that Benny should probably get into physical therapy. I was horrified and relived at the same time. How do I do this? What does this mean?

This was before all the testing and results we have now. I was just a mom that was getting on my phone and seeing my little baby wasn’t hitting his milestones and month by month he’d get faith and farther behind. I’d make myself sick thinking about how far behind he was and that I was doing everything I could everyday to play with him and work with him with little progress to none.

First Steps has been Benny’s best intervention. All of his therapists are such wonderful and amazing people. I’ve been blessed to get to know them and how hard they have all worked with Benny and BELIEVED in him. It’s choking me up to think that in just a few weeks, I won’t see them like I have. Thank goodness for Facebook. They can keep up with Benny and vice versa. I know that it’s part of their career to step in during times of need for families, but they are just more than therapists to my son and family. They have really been angels that have brought so much hope to us in a scary time. To say I’ll miss them is a terrible understatement.

We have been in the process of working on transitioning Benny from First Steps. Benny went Monday morning to check out Muncie area special needs classes. Ben and I really enjoyed the ladies that we talked to there. Super sweet and lovely. They enjoyed Benny for what little time he was there. They want us to come back for a follow-up in the next week or so, but I really think that in Benny’s best interest at this time he would be better suited to continue on private therapy with one-on-one work and let Ben and I integrate him into social aspects where there are children and other learning activities. We are looking into pediatric rehab which is downstairs from his pediatricians office and also doing speech at Ball State, because truly, communication is going to be the hardest and has been the hardest for him. If he never utters a word, he needs to be able to convey his wants, needs and feelings in some way to the world.

Aside from the school trip, this past Monday was also a double-header with speech and end of First Steps meeting with Benny’s service coordinator. She’s a great lady and even though we only got to meet a few times, I’m glad that I did because not only is she a wonderful human, she in just the short time I met with her gave me so many great resources to help.

There is so many things that I want to put, but just not enough time today. Another busy week will slide into another and the next time I’ll probably write, I’ll have a 3-year-old!

The last thing I do want to mention is that we did go to Riley Children’s Hospital on Thursday afternoon and after a 6 month wait we saw a doctor to get Benny tested for autism. She was so nice. She came in and asked Ben and I questions about Benny to start and then she got out her bag (Benny went right up to it) of toys. She sat down at a little child desk with chairs and invited Benny to play with some toys. As she played with him, she asked us to not interact so she could see how Benny reacted. She got a baby doll out and to explain what the size was, I’d say it was Benny mouth size, because that’s exactly where it went! Haha! She giggled a bit and said something about the baby being tasty. She continued to play with Benny and would stop to circle things on her paper.

I’m sure this is nerve-wracking to parents. They aren’t sure what’s going on with their child and these tests are just so important to move on so you can get your child the help they need. I wasn’t nervous. I knew whatever the outcome was, that Benny was Benny. I don’t know what a clear look at autism is, it’s a spectrum…so how can you? Like, what is normal even? I know I’m not. Well, everyone knows that!

She gave hims some goldfish crackers (his favorite snack) and continued to jot down some stuff. She spoke to us a minute and let us know she was going to go out and total up his score. We played with Benny as we waited and looked out the windows. When she came back in, she had another lady with her and they spoke to us and I felt like they were trying to be easy about how they were going to tell us the results. I told her that the outcome makes no difference to me, that the only reason we were really there was that if he had it, it would possibly help us get better resources for him. She smiled and said she was glad that there were people out there that had that outlook. Ben and I don’t care. I don’t care if tomorrow Benny turned green and had 3 heads. As long as one of those little heads still came up and gave me smooches and wanted to be tickled.

Benny having autism isn’t who Benny is. Benny is Benny. He’s not 15Q24 either. They are things he has and lives with, but just as I’m left-handed, that is NOT who I am. There are so many things that I know will be attached to him growing up. Ben and I will continue to work tirelessly to keep Benny happy and healthy. Making sure he has the resources at hand that he needs and to make sure that when we aren’t here on this Earth anymore, that people are watching over him and taking care of him if he isn’t able to live independently. Things any parent wants for their child.

I also wanted to mention that if anyone isn’t over on Facebook on Benny’s World to head over there: Benny’s World Facebook Page

Until next time, everyone have a Merry Christmas and Happy Holidays!

 

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Halloween…tricks and treats.

Hey everyone! Hope this Tuesday afternoon finds you well!

Right now, Benny is down for his nap and I’m catching up on this and laundry. Typical stuff. Though 24 hours ago we were still without power from Sunday’s storm An EF-1 tornado came though Muncie and hopped over our house and hit in a nearby neighborhood. We were without power for 24 hours and luckily, we had a generator to keep us going. We hooked up enough things to charge our phones, keep a lamp going, turtles houses heated and a portable heater for us. So while we were without a lot of conveniences, we still had what we absolutely needed.

Today, Benny had energy for his therapies and was in a good mood, albeit, a little all over the place…he did well! Somedays, I just don’t know what progress we’re making, but he’s having fun and that’s honestly the most important thing for him. He’s playing more than he use to and is curious. He has some foam steps and ramp we got him for Christmas last year and he could barely walk, but we thought he might show interest in them. He didn’t. The last month or so, he’s shown great interest in doing things on his own, including climbing so Ben thought of a great idea…BRING THE STEPS INTO THE LIVING ROOM!

It took about a week before he actually noticed them enough to want anything to do with it. Last week, he wanted my hand to go up the steps and use his other hand to guide him along the wall. 2 days later, I come into the living room from doing dishes and he’s half way up the steps! Now, he’s a pro, he’s doing it on his own with one hand. He’s gained speed and even better, he’s gained confidence! It’s awesome to see and there’s not one single time that I’m not in awe of him!

Going back to last week, it was Halloween! Benny dressed up as Jon Snow from Game of Thrones. He went to his Grandma and Grandpa Galvin’s house first and he just looked the part. Ben ordered his costume off of Easy and had a girl tailor make his outfit out of leather to look just like it. (Follow: Benny’s World on Facebook. I’ll put the photos up there!)

One setback on Halloween happened in the morning. I woke up and went outside to take the trash out and noticed Benny’s red ball that was usually in his red wagon, right infant of the door a few feet in the yard. I thought to myself, “I didn’t know it was windy last night.” shrugged it off, picked up the ball and turned to put the ball in the wagon and it was GONE! GONE! Both his wagon and his favorite blue car I pushed him around in every day this Summer, even when I was sick, I’d push him! It just made me instantly upset and shake inside. We keep these things out yes, but up right on our back porch next to our door and hidden next to trash cans. I just couldn’t believe that someone had the nerve to do that. Benny wasn’t ever really interested in toys a year ago, but that car and wagon he was. He even would collect his favorite sticks and put them in his wagon and would take them out to play every time. When we would go outside, he would immediately go to his blue car. He learned out to get in and out of it all by himself.

It’s all replaceable, I know, but it’s just the point that someone stole something right off of our porch that isn’t super visible. To know someone walked right past the side of the house where we sleep and walked right up to our door creeps me out. I’m almost positive it was just someone getting their kids toys so they could tote them around on Halloween, but that was our plan too!

Anyway, everything has been purchased again thank to both sets of Benny’s grandparents (who got him the wagon and car to start with) so thanks guys, you really didn’t have to!

This week is busy, one more day of therapy and then Benny gets flu shots on Thursday. Friday he’ll be going to a pediatric optometrist to get his vision tested and I really hope that goes well. I hate getting my eyes tested and I’m an adult that knows that’s going on!

I briefly mentioned it, but I know have tried to link Benny’s Facebook page to this. If you’re interested in keeping up, I’ll try to do it here and there. I imagine this will be updated more thoroughly and Facebook will be more photos of Benny.

Check out: Benny’s World on Facebook!

Until next time!

Where does the time go?!

I can’t believe that the last time I posted on this blog was the day before the fourth of July,  truly, time does fly.

This Summer and Fall are almost a blur at this point, but I will do my best to fill everyone in!

First off, welcome to those of you that are now on Benny’s World via Facebook! If you’re new to the blog posts, feel free to go back and catch up!

I basically made Benny’s World accessible via Facebook because people are more familiar with how Facebook works and with a link from there to here, I figured “WHY NOT?!”

So, with that being said, I will do my best to keep this thing up and going. As any person knows, that’s easier said than done. I found myself at times wanting to update and then feeling discouraged to start and entry. Some days are just easier to manage to find time to not do things! I so very want to keep people in the loop about Benny, because in all honesty I know this is going to be the least he’ll be doing and that sounds crazy because I feel like we’re always constantly doing something!

The Summer was full of fun, swimming and yes, he loved the fireworks on the 4th of July! We had a few trips not only this Summer, but this Fall as well to Kings Island. Benny even rode his first rollercoaster with his cousin Hannah! Charlie Brown’s Great Pumpkin Coaster. I would have loved to say he enjoyed it, but he merely tolerated it as it was well over an hour passed his nap time. I was proud of him though and my niece Hannah who made sure he was ok the whole time. It wasn’t even 10 minutes later he was OUT!

This Fall has been a blast! Just last week was Ball State’s Homecoming week and almost everyday we did something in The Village there at Ball State. We live just a few blocks away from Ball State anyway, so it’s a great excuse to get out and try to immerse Benny. There are times he might be into something and others he could be anywhere on Earth and it wouldn’t seem to matter.

The thing that I love about Benny is he takes what HE WANTS out of life. What you or I might not see or do, things are different to Benny. It’s great to learn from him. I remember when he was little, mourning the fact that he wasn’t like other kids. That he didn’t look when you asked him to or he wasn’t involved with something how you felt he should be. He does things on his own terms and his own way and while we do encourage him to try new things and to do things differently, we never force him to do anything he absolutely lets us know he doesn’t want to do and we listen to him.

Though he’s not verbal, Benny has a way of letting you know. He also has no problem letting you know when he’s in to something too. It’s awesome to see him light up over something. It’s interesting, as a parent, I think all parents have a certain idea of who or what they hope their children will be. You hope your daughter will be a dancer or your son on the football team and come to find out your son hates sports and loves video games and your daughter has 2 right feet! I think I had to sock those thoughts away at a very early time for Benny and focus on different things like just making sure that he could express to us his feelings.

I’m excited to see what new things he will like, though he’s pretty stuck in his ways, haha! He’s still into Daniel Tiger and Chuck E. Cheese. Try as we might, we can’t really get him into new kids programs, but who knows what the future brings!

Getting back to the BSU Homecoming, we went to the bed races one day and the next we went to the Parade, he enjoyed both but I think he really liked the parade. He wanted to hold his bucket (a pumpkin bucket he picked out the day before at the store) and it was nice to see people come up and put candy in and him watch them do it. He LOVED anything that involved music and dancing and even tried to run after a mini pony, hahah! I love that kid!

If you follow me or know Benny’s World on Facebook, you’ll have taken note that Benny is an avid lover of collecting sticks. He gets it honest, Ben and I were both stick lovers growing up! Ben spoke to me of his childhood when he and his grandmother Meme would go on walks and she would pull him in a wagon and he would gather sticks and hide them at the Student Center at Ball State.

We (Ben and I) are super stoked on Halloween this year, Benny is going to be John Snow from Game Of Thrones. Ben is such an awesome dad, he bought Benny’s outfit on Etsy from a seller that makes children costumes and he has a real deal John Snow outfit that is made of real leather! Ben is working hard on his sword and I just couldn’t be more proud that I have a husband that even though Benny might not fully understand what his costume is, he has already wore it a few times and was so excited!

As far as Benny’s therapies, 4 a week nearly wipes us out and I’m glad we have 3 days in a row and then the rest of the week to do things. I love his therapists, they all believe in Benny and they are so encouraging to him and honestly me too. Here in a few months Benny will age out of First Steps and I know Ben and I are both not ready to see that time end. When it first started, I wasn’t sure exactly how it would impact us all, and it has greatly. Now, here we are with just a few months left and we’re working on getting stuff going on special education/preschool. We are hoping to find a school that will have Benny’s best interests in mind and that will listen to us as parents. I never thought I’d be a mom and now here I am having to sit and think about my child and hoping I can find a school that will best fit his needs. It’s scary, I just think about all the funding that has been cut from schools and Medicaid and I use to try to stay out of politics, but when it’s your child they are talking about taking things from…you just can’t sit idle by and watch the world take opportunities away from children that deserve basic rights and education is a basic right!

Benny is a climber now, slowly but surely! I catch him in his room standing on a chair and there’s a part of me that my heart stops because I worry about his safety, but another part of me that is so happy because I remember him at 1 barely being able to sit up on his own!

In the next month or two, Benny has a pediatric eye appointment to be tested for vision,  his first dentist appointment and he will also be getting tested to rule out any form of autism. Once all of that is taken care of, next is the schooling and to see what will be a good fit for him.

I know it’s been almost 4 months of no posting and that makes for a hard time to try to catch up, but if ever there are questions, please feel free to contact me via this blog, Facebook or messenger.

Until next time!

 

 

Love makes us stronger

Hello, hello everyone!

Long time, no blog.

It’s all on me though, it wasn’t because there isn’t something to write about daily. It’s not because there hasn’t been great things happen for Benny, but because I’ve been sick for a long time and it finally caught up with me.

Before I get into that, Benny has had a wonderful Summer. He’s swam at least 2-4 times every week for the last 2 months. He’s went to Kings Island multiple times, once with his cousins Addie and Gabby, Aunt Kate, Grandma and Grandpa Galvin, and mommy and daddy. We’ve had such fun!

I’ve been so excited to go on walks with Benny and take him to the playground, go on these little day trips and do so many things, but in all honesty, I’ve been sick.

I wasn’t clear on how serious I was sick until about 2 weeks ago. I’m on anti-anxiety medication, I have been off and on for years. After Benny’s genetic test results and the adding on of more therapies, it was a lot for me to take on. I spoke with my doctor and told her that my anxiety was through the roof. The dosage she gave me didn’t seem to work. I had such pain in my chest and back nightly that I practically had a heating bag strapped to me 24/7. The dosage was upped and it seemed to be more manageable.

Benny’s speech was on a Monday, it didn’t go particularly well. He’s become more independent in what he wants and doesn’t want. It was a rough session that day. Tuesday, he had back to back (break in between for lunch) therapies and I had a new service coordinator to speak with. It was a lot to take on that day, I was stressed. He just seemed overwhelmed, as was I. In between the sessions, I made him lunch quickly and for a 3 hour span, there was at least one person in the house, if not 2 that I had to talk to or work with for Benny.

By the end of the day, I was wiped out. Just drained. Ben came home from work that night and I asked him if we could go to Chuck E. Cheese. One, because Benny had a long day, but because I NEEDED to go to Chuck E. Cheese! I just needed a break. It was nice, but I wasn’t feeling the greatest. I chalked it up to anxiety.

The next day after physical therapy, Benny went to his Great Aunt Kathy’s house to swim with his cousins and there were just a load of people there to play with. Ben and I went out on a day date to the movies. We ate there and I just didn’t feel well. Again, I thought I was just having a hard time due to anxiety from the previous days.

That evening, we went to dinner with everyone to pick up Benny. He fell asleep on me and I just held him. I felt so awful, I didn’t want to eat. That’s not like me. Ben asked me if since I was having a hard time, if I wanted to have a beer or two. I’m not much of a drinker, but I had a couple of beers in the hopes it would relax me. I spent the rest of the night feeling awful and at 6 in the morning on Thursday I was awoken by what I thought was the most serious panic attack I’ve ever had. It lasted 2 1/2 hours. I really didn’t know what was going on, it felt like a heart attack. I just felt like if I could lay still, I could get through it.

Later that morning I asked my mom to come over. I talked to her about my panic attack. She said, “That does not sound like a panic attack, that sounds like a gallbladder attack.”

I went until Monday in pain, barely eating or drinking anything and said I’d go to the doctor. She immediately sent me to get a CT scan. The scan showed that my gallbladder was pretty bad and needed to be removed immediately. I went and saw the surgeon on Tuesday and by Wednesday morning, I was scheduled to have it out.

The doctor said that my gallbladder was really diseased. He told Ben that my gallbladder felt like clay. The next day, I had a scope done and was put under a second time. The doctor said that he had to put a stint in, in the hopes to get the stones to pass through that were stuck. He took out 10 and he couldn’t believe how many I had. He didn’t want to go for more because he was worried about hitting my pancreas.

I have one more upcoming scope to see what the stint has done and I’m hoping that this will be the last time I have to deal with this. I know stones can still form and now my liver is working overtime for the rest of my life so I’ve taken this as a wake up call for me to take better care of my body. I want to be healthy for my son, he needs me to be there for him and I want to be!

He’s worked so hard it’s not been easy for him with me being gone in the hospital and not being able to pick him up. I told him before my surgery that mommy wouldn’t be able to pick him up and do all the things I usually do. That’s I’m sick and it will be awhile before I can do what I use to, but that mommy loves him.

It took him a few days, but he’s done great. I’ve gotten to play with him and go on walks, but no picking him up. It’s terribly hard, harder than recovering from surgery, but I don’t  want to make it worse. I am feeling better and I’m sure after this week, I’ll feel even better.

I felt awful that it happened when it did, it’s never convenient to get sick, but I still feel bad about it. I’m so fortunate that I have such a great family, not only mine but Ben’s that have helped so much. I know it’s been a great stress for Ben as well, work and coming home and doing it all and I’m grateful for him for taking care of Benny. It’s not easy.

Benny’s routine, hasn’t been routine and that’s been hard for him and understandably so. I just want to get back to “normal” and have a great rest of the Summer with my guys!

I know this was more of a me blog than Benny, but I’m hoping in the next week or so we can get back to business as usual!

Tomorrow is the fourth of July and I can’t wait for Benny to see the big fireworks! He made a painting today that looks like fireworks, he did so well.

He’s such a sweet, fun-loving kid and I’m more and more proud everyday to be able to say I’m his mommy!

Happy fourth of July to you all! Be safe and until next time!

 

First Haircut!

Welcome everyone and happy Monday!

As you can tell from the photo, Benny got his haircut and HE IS LOVING IT!

I wasn’t really sure exactly how he would respond while getting it cut, if he’d notice it was cut and if he’d like it. He did really well, we took him to get it cut by my cousin Stephanie and she did an amazing job. She not only did a great job cutting it, but interacting with him and making sure he was comfortable. It put me at ease.

He watched Daniel Tiger on his phone (my old phone haha) and ate Goldfish crackers. The only parts that were a little rough for him were around the ear and the back of the neck. Honestly, I think that’s how it goes for anyone. Haha! She took her time, but it didn’t take long at all. I think the thing that took the longest was her sectioning off his hair in little parts so we could keep them for his baby book and his fans that want his hair. There were more people who wanted his hair than I anticipated!

There were a few times he looked up while getting his hair cut that he looked at himself. It was cool to see him notice himself. After he was done, Ben let him down and he ran off like he was a new man! He kept feeling his head and smiling.

Oh those smiles, as you can see in that picture, he wouldn’t stop smiling! I loved it. Sure, we all miss the long fluffy hair, but you can’t beat how this kid loves his short hair. I picked him up and he was looking at me with such loving eyes almost as if to say “Thank you for doing this mommy, I love it!” I tried to not cry (though I did later) seeing him look so grown up! It was like he aged 3 years in just a few minutes. I couldn’t believe it.

Benny seems to be looking around more and I’m sure that hair (albeit was super awesome) didn’t help with his vision that so desperately needs to be checked.

Today was his loaded day with therapy and I both look forward to it and dread it. I know speech is so darn tough for him. He has a heck of a time focusing on anything. Joint attention is so scattered and he gets increasingly frustrated. I can only imagine how hard it is for him. I have to keep positive, though it is a bummer at the same time. Watching him just make noises that he’s frustrated and trying to get him to focus is almost impossible when he doesn’t want to. I keep trying to get him to use the magnets with pictures on our fridge, but he is resistant. He wants whatever he wants and he wants it NOW, but won’t pick a picture. I’m not sure if it’s not descriptive enough or if he doesn’t want anything up there or if he just doesn’t want to use them. He did so well for so long. Now, he just wants to pull me to the cabinet or fridge and expect me to just know what that is.

I have to keep working harder, this isn’t something that will just happen someday. I don’t have that luxury of just knowing things will fall in to place with him. Everything he’s ever done he has worked for to do. I’m proud of him more than anyone could ever know, but yes, I am that mom that has to guide him and tell him the same thing over and over and I’m sure people would probably think I’m being hard on him, but I do everything I do with him in mind and his feelings as well. I always try to put myself in Benny’s place, which is probably why I at times become so emotional because I worry for him and how his future will be. I want the best. He deserves it.

Anyway! Tomorrow is developmental therapy, Wednesday is physical therapy and then this weekend we have an open house to go to for Ben’s cousin’s graduation and Meme, Ben’s grandma has a party on Memorial Day for her 95th birthday! It will be a pool party, so I’m hoping we can get Benny in and swim! He loves the water and now he has a new swim outfit and floaties!

I hope everyone has a good week and since I’m sure I won’t write until more than a week from now, Happy Memorial Day to everyone!

Summer clothes and little toes

Hi friends and family! Happy Tuesday!

Right now, Benny is upstairs taking a nap in the Music Room at The Student Center in Ball State University.

Today was Benny’s first occupational therapy session with a lady named Morgan. She seems great, she was great. I hope we can keep this up.

She greeted us when we were outside with Benny. We went inside and she started taking to us about what Benny can and can’t do. I’ve grown accustom to this, and I hate that. I feel like I shouldn’t have to explain him, but I’ll have to for the rest of my life.

He actually amazed me (Go Benny!) and he was more focused than I’ve seen him in I don’t know when. Toys that we have and try to get him to play with (he doesn’t), he seemed interested with her. I don’t know if he was showing off or not,  but he was smiling and playing with her.

It made me want to cry. I love seeing him play with others and doing well, but it does make me step back and try to figure out “How do I get him to be engaged with me so we can learn more on a day to day basis?” I want to put in motion what the therapists do, but I realize that they aren’t me, haha!

I got a good feeling today and I’m excited for next week. I’m so grateful for these women that have been brought into our lives to help my son. For how ever long or short the time, it has been worth it and when the time is done, I’ll be immensely sad not seeing them.

The weather has been great the last half week. I’ve gotten to mow, de-weed, move bonfire wood and clean a bit.

Sunday was a great Mother’s Day! Kings Island wasn’t super busy and we rode the carousel and train. We didn’t stay too long as we were all kind of tired, haha! Then we went to Jungle Jim’s International Grocery and home.

Monday was both speech and developmental. Benny got upset at one point at the end of speech. He’s not using magnets as he use to. If he wants crackers,  he looks where the cabinet door is for the crackers and he’ll look at the top of the counter where I put his drink to refill it. It’s frustrating for the both of us. I know what he wants at that point, but I have to reinforce the magnets so I know for a fact that’s what he wants. Someday, it might not be those.

I don’t want him to just go to the forge one day and make me guess what he wants. I want to be able to do the picture exchange process to help us. If he’s not talking, this is going to help me until he can physically go and grab something for himself.

I don’t want life to be frustrating for him and him to shut down. I worry so much about that. If I couldn’t tell someone verbally what I wanted and I was too little to reach and get things, how would I express myself? It’s scary. He does so well and it makes me want to cry. The world around him isn’t built for him, but I’m going to work everyday to make it a little more his world.

I’m excited for summer and little trips. Kings Island, day trips to wherever. Little tank tops and shorts. Swimming with my dudes. Playing in the back yard, lots of walks and maybe a picnic.

Friday, Benny will be getting his hair cut. Not a little, a lot. Short on the sides and back and longer on top. I know it will be cute. My cousin Stephanie has graciously taken this on and I am so fortunate to have her be able to do this. I know she will do an amazing job. She’s never met Benny and I’ve not seen her in probably a decade. I’m nervous and excited. I know it will be best for him. He’s chewing and pulling it now and with it getting hotter “His hair looks so awesome” is just not a good enough excuse to keep it that long.

Tomorrow is physical therapy and after that, he has the rest of the week off! I know I’m ready for a day off of therapies! Haha!

Until next time!

-Amber-

You make me smile

Even on the hardest of days, Benny makes me smile.

Today isn’t one of those days for me though, thankfully.

He’s ate a good lunch today. Avocado, chicken, apples, grapes, cherry tomatoes and strawberries. I think today his favorite thing was avocado, because even after he was done with his lunch, he came over and ate some of mine! Haha!

I thought I’d catch everyone up on the last few days.

We’ve FINALLY got someone to come and do occupational therapy with Benny. Her name is Morgan and I’m excited to meet her this Tuesday. We were put on a wait list in July for a therapist, they don’t come easy!

That will mean Benny has therapy Monday-Wednesday.

Monday- Speech – 10:45-11:45 & Developmental – 1:00- 2:00

Tuesday- Occupational- 1:45-2:45

Wednesday- Physical- 11:45-12:45

If anyone ever wants to know what we’re doing on those days, that’s it. We’ll be busy trying to fit the rest of the weeks work the other days. It’s going to be busy through January when he stops with First Steps. I am kind of scared of when it ends. It seems like we’ve been doing it forever. It’s been since he was 8 months old, but it seems longer than that and it’s been such a blessing. I’ve learned so much and watched Benny grow with the therapists. They’re really family more than anything to me.

I got a phone call the other day that I wasn’t expecting to receive for another few months at least. Benny’s name finally came up for the Family Support Waiver. We were told it could take up to 18 months (families years ago were on a 10 year wait list). We were very fortunate and waited 4 months shy of a year.

It will help us immensely and while I’m not 100% sure exactly what all it will aid us with, I’m glad we’re receiving ANY help at all. With him being disabled, this is a life long thing for him and he will need assistance for the rest of his life. Having a child with a developmental disability, I just do not know what his future holds and this will give us some of the essential help he so deserves and needs.

I just want to make sure my child has the help he needs and I will continue to work on that. There is just so much out there I don’t know, it’s scary. I barely know what is going on with my child, let alone the system that I need to know how to properly take care of my son.

There clearly isn’t a handbook for taking care of our children, let alone disabled children. I’ve been fortunate to be a part of some Facebook groups and feel I can ask questions of the other parents, but there is still so much even they aren’t familiar with. Having a disorder that has only been known of since 2007, it’s still fairly new to doctors and families.

Everyday is a new day to learn about what my child is going through, he never ceases to amaze me and I feel both excited and depressed every single day. It’s a battle, as I mentioned in a previous post. It just is. I will continue to be the best mommy I can be to Benny and stand up for him in every way I can. Be it emotional, educational or otherwise my child deserves to be happy and I will do my best to make his life comfortable while challenging him to strive for his full potential. In some ways, I’m a typical parent, in other ways I just can’t relate to normalcy.

Another thing that I know is kind of off topic but has been on my mind is that maybe some people Benny will out grow this.

Benny will not outgrow his DNA.

I don’t want anyone to think I’m selling my child short. I also don’t want anyone to think I’m living in a fantasy world.

Benny is disabled. That isn’t WHO he is, but WHAT he is. If that makes sense. It doesn’t define him, but does describe him.

Just as one might have red hair doesn’t mean that’s all they are. It’s part of our DNA. While a red-head can change their hair color, Benny can not change his disability.

No parent wants to ever say their child can’t do something, but as Benny gets older, that will become a part of my vocabulary. Not because I don’t think he can do something, but because he mentally or physically can not do something. It won’t be something at a certain age he will just one day wake up and do. Because we all hit our plateau. I will never learn certain things, or physically do certain things because that is who I am. We will learn to live with that and live with Benny for who he is. I will not be ashamed of that. I will hope that others that love him will understand that or can try to understand that.

My child is not normal and that’s ok, because it has to be ok. I don’t want my child to know that he is to be something he is not. He is perfect for him. He will be who he was meant to be and that’s ok. He’s special.

I also have had a hard time explaining to people who are curious that Benny is severely cognitively disabled. While he can do some things, he doesn’t do other things at all. I know people see him and see him smile and laugh and think “Well, he seems normal” or “He looks normal”. Just as people have invisible illnesses that are real, Benny’s disability is real. I show people the good a lot on social media. There are a lot of rough times. Benny has only been walking for a little less than a year and I believe his balance will always be off. While he continues to get better, faster and he’s looking a little more when he steps he is still very clumsy and off-balance.

I’ve had people ask me if Benny has down syndrome “Though he looks normal, does he have down syndrome?”

No. Benny has a micro deletion of his DNA. Down syndrome is an EXTRA chromosome. I do not know everything there is to know about down syndrome, but I know Benny for sure doesn’t have it. Those with down syndrome tend to be able to do much of what “normal” people do. Granted, it is usually delayed and they also have a lot of cognitive and physical delays, but not usually as severe as what Benny has.

It’s most frustrating when people think he will grow out of this. I can’t explain it well enough to let people know just how serious this is. I wish nothing more than for my son to thrive and be a growing member of society, but he doesn’t notice the world around him like you or I do. I’m not sure yet (as he’s not been tested) if he is on the autism spectrum or not. I just know that Benny is usually in his own world and if you can get him out of it for a moment, he is a joy to be around. But he will be in your world on his own terms. He doesn’t play with toys or with children. He rarely ever notices people.

If you engage with him, he will most likely look everywhere but who is speaking to him. He might turn in the sound of your voice, but if you aren’t someone he already knows (family) he will most likely not engage you and if he does he will not look directly at you. This is especially hard for therapy as it takes joint attention for him to learn anything. It takes a lot of coaxing and trying to get his attention. Somedays it breaks my heart and other days I’m ok. Believe me, when he comes up to you and gives you his attention, you stop what you’re doing and give him all the kisses, hugs, tickles he wants. It’s a special moment.

I know I ramble on a lot, but it’s hard to put down constructively and precicely exactly how I feel. I’m all over the place.  I hope that some of what I say makes sense in some fashion. If ever any of you that read this have any questions at all, feel free to ask me. I know it’s not easy to ask, I don’t know that I would if the shoe was on the other foot, but sincerely I will do my best to answer. You can message me on here or if we’re Facebook friends, you can hit me up there.

I appreciate each and every one of you that read these and take time out of your busy days to see how Benny is doing.

BTW, he’s napping and tomorrow the Ben’s are taking me to Kings Island for Mother’s Day! I’m so excited! While we don’t really ride rides, we love people watching and of course will ride the train and eat some yummy snacks!

I hope you all have a great Mother’s Day no matter if you’re a mother to a human or animal! Mother’s Day can be hard for everyone out there for various reasons, but I hope that there is some ray of sun that pops in to your heart to make you smile. Remember that you are loved!

Until next time!

-Amber-