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Cause’ baby you’re a firework!

Happy July and well, by the time most of you read this…Happy Independence Day!

This morning started out with a bang, and not in the greatest way.

Benny woke up laughing and being his typical chipper self. Then, we went to speech therapy. Today was SUPPOSE to be SUPER. It was less than so. After speech, we were walking out the main door to head to the elevator. I was, as usual, holding Benny’s hand to go out the door. I’m USUALLY so cautious of every little bit of his body and where it’s at, at all times and today I failed. So hard. The door shut on his little fingers and as I looked back to tell him to come along, I saw it.

Oh lord, I almost got sick. He looked shocked and then he cried and cried hard. Benny isn’t a crier. He’s got such a high pain tolerance and man, it just happened so fast. I whipped him back in the waiting room and immediately his physical therapist got him an ice pack. After a minute, he calmed down, was moving his fingers and was even laughing again, but I wasn’t. I do my best, but I cried when I got out to the car. I hate crying infant of Benny (or anyone), but it happened. I talked to him about it and let him know how sorry I was and that I will do better. I think he understood, he gave me lots of kisses today afterwards, as if to let me know that he was ok.

I’ve had many “mom fails”. I feel like I do it daily, and I try to move on and not only learn from it, but tell Benny how I am working hard to do my best. Trying to let him know mistakes are not only ok, but that it’s not the end of the world. I tell him and I hope he understands because in all honesty, I don’t. I’m always critical of myself and kick myself when I’m down. Today, wasn’t anything new on how I felt, but it doesn’t do anyone any good if I kick myself down harder. It shows Benny that it’s ok to beat yourself up. I did fail him by not being more cautious, but I did my best to take care of him after it happened.

Things like this are hard for me to shake. I’m sure most parents feel this way. I guess, I’m even more so upset because this kid just does his best everyday and is just the sweetest soul. He works so hard. When something like this happens, it takes me awhile to shake it off. I do my best, but I guess I wouldn’t be me if I said, “Ah sure, no biggie…I’m cool.”

How do parents do it? How have they done it for all these years? I felt like dying today and things could be just so much worse. How do parents deal with their sick children? I shutter to even think of the terrible things in the world. It sends me down a deep hole that is hard to get out of.

Honestly, though today sucked on that note, it’s been a good day.

Benny and I got to go for the umpteenth time and go swim at my husbands Aunt’s. It’s been wonderful. To say we are fortunate is an understatement. It’s been like being on vacation being able to have a safe place to go and swim and just have a blast!

I can tell Benny is becoming more curious and learning. We’ve tried a few times to take his floaties off and see what he can do, but he’s just not there yet. I know he will get it though.

Benny has had such a great Summer and I hope that it continues to be! We’re having a 1/2 birthday party for him this month. Hawaiian themed, pizza and swimming. It’s honestly an excuse for everyone to get together, swim and eat cake. Benny’s birthday being in the dead of Winter, it just stinks that there have already been years where the weather has pushed out his parties.

As far as therapies, it took what seemed forever since First Steps, but he’s now in Speech and Physical therapies. He’s had his Occupational therapy evaluation and we’re hoping for him to get the green light on the start date soon. Next week, he starts Music therapy and I’m so excited for that for him. He’s also starting next week, behavioral therapy. There isn’t really anything that Benny exudes as a problem, but they can help us with potty training and other useful techniques to help him progress and become more independent.

It’s crucial to me for him to be as independent as possible. While I love holding his hand and will do it (as long as he lets me) until the day I die, I know it is HIM that has to learn how to use the restroom, bathe, dress and feed himself properly for the rest of his life. If I could stop myself from aging and live forever just to care for him, I would.

I know that Benny can do all of these things, it will just take a lot of effort and work. It may come sooner than later, but only he holds the key to his focus and drive. We as parents can only find the resources and help him so much. Forcing any child beyond their capability at the time will only hinder and possibly stunt the growth. I am not that kind of parent. You can push and encourage but FORCE is an absolute negative result.

I am hopeful for Benny, I am worried for him. That’s a parents job, to live for your child to grow in every way possible so that when you leave this Earth, you have something left behind, your seed, your tree that has grown and blossomed. Benny has given me the greatest gifts the world could offer. His love.

I know this post may have been a downer, that was not my intention. While I write this all out, I really am happy but I need to be honest about what is out there. Some times are really happy and things feel “normal”. I don’t know what any other life would be like. Benny being my only child, it’s all I know. This IS my NORMAL. However, yes, there are times that I feel sad and I’d be lying if I didn’t say that. Things are just different. They are different for everyone and I’m grateful for every second I get to spend with Benny and learn as much as I can and hope that I can teach him something at the end of the day.

Things are slowly moving along for therapies and I’m still hoping to get him into ABA therapy. Waits are long and the children really get the junk end of the stick. I wish there were enough facilities and educated people do work with special needs children, but there just is a shortage. We will continue to do our best and keep striving for things to get done. I know that with consistency and work that things will fall in place.

As usual, I feel like I typed too much and yet didn’t say anything. What’s new?! Haha!

I hope this finds you well, enjoy the Summer everyone!

<Benny’s Mom>

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Beach baby, beach baby there on the sand…

Hey everyone!

6 more days until Spring and since it snowed here today AGAIN, I can say I’m truly ready for Spring!

Snow is so beautiful, but dang if it doesn’t put a damper on doing things.

However, it didn’t keep us from our much needed SPRING BREAK!!!

The night before we left for our trip, I told Ben, “No, I don’t want to go to Florida.”

I’d had a long day with Benny, hadn’t been sleeping well and I was not in the mood to do ANYTHING. I just wanted to rest. I didn’t want to be in a car for hours on end and Florida is a DRIVE.

I went to bed that night and when I woke up, I finally felt rested. Ben said he had the rest of the week off so I said, “Ok, well….let’s go to Florida.”

We packed and got ready in about an hour. We’re pros at getting ready for trips. I conveniently had all the laundry washed and the turtle tanks were clean enough so all that was needed to do was pack and set up the turtle feeders and go!

We made it to Pigeon Forge in the evening and ate dinner, went back to the hotel and swam in the pool. Oh man, Benny LOVES swimming. He’s become so much more confident and independent. He doesn’t mind his floaties being put on and his favorite thing to do is spin around and around, haha!

As we were going back up to the room, there were leftover cookies from the hotel’s snack time and we took a few and went up. I decided to give Benny a bath and rinse off the pool chemicals and second to the pool for him is the tub. That kid just lays back and relaxes. I thought it would be funny to give him a cookie while he was relaxing, boy, he has the life! Haha!

The next day we got up and drove, it was a rainy ol’ day. It seemed like we couldn’t get a break away from it. We stopped in South Carolina for lunch, which was the same place we stopped a few years ago when we took our first family trip to Florida. We love going to Fuddruckers for a bite. After we filled our bellies up, we got back in the rain and drove the rest of the way to Florida. I think we got there around 9:30 and man, I  know we were all ready to get out of the car.

It was nice to feel the air, it was so much warmer than home. We ordered a pizza and had it delivered to the room (another tradition) and settled in for the evening. We did go out to the beach just for a minute to see the ocean. I could tell Benny was ready to go play, but it was time to get ready for bed.

When we woke up the next day, there was a low tide warning. The ocean was engulfing the entire beach! We ate breakfast outside and just enjoyed the air, even if it was super breezy, it was nice to feel some warmth.

We played and swam and let Benny get reconnected with the ocean. That little boy loves water so much. Floaties became almost a second skin for him when we were out. I was so glad that he held both Ben and I’s hand when we were near water. He’s getting more and more curious and brave these days and it was nice to have him hold our hands for safety. Heck, I felt safer holding his hand!

The low tide subsided and we got to stroll on the beach with our car. It’s always neat to check out the beach and see people, though it wasn’t very busy. We got lucky that it was the week before most Spring Breaks and Bike Week! While it’s cool to see people and stuff, it becomes almost unbearable when that stuff is going on.

Saturday, we thought we would try to go to Gatorland, but it was so busy we decided to take a rain check and come back. We opted for going to Old Town in Kissimmee which is another favorite stop for us. It’s got an amusement park and lots of little shops along to pop in and check out. We ate lunch there and of course had to have pizza at Flippers!

After a nice nap (mommy and Benny both), we got up and went down to have our dinner at the Drury. The 5:30 kickback is always awesome. It’s not really suppose to be a dinner, but I know we make it one! It was packed with a dance team and I was so glad we were just doing our own thing. We had a special evening planned for Benny and really for all of us! Ben and I grew up in the 80’s where animatronics ruled. Showbiz Pizza was a special place to go to for fun and to see The Rock-afire Explosion Band play. To see all of these characters play songs was so neat and then just in a blink it seemed it was gone and came to be Chuck E. Cheese.

Of course Chuck E. Cheese is great, Benny loves both and aside from Daniel Tiger he will literally watch nothing else. He loves animatronics and for that, I’m so grateful.

Ben had set us up a special tour with the creator of Rock-afire Explosion in downtown Orlando that Saturday night. We drove and listened to Rock-afire songs on the way. It was hard to believe that we actually were doing this. We met Aaron, the creator and his dog Athena and we got to see all of the defunct animatronics that he’d created along the way. If you don’t know what anything is that I’m talking about, just know, he’s the guy that created probably your favorite arcade game...WHACK-A-MOLE.

The tour took 2 hours and it finished with getting to watch Rock-afire preform. He played songs just for Benny that were his favorites and it was just hard to not choke up seeing my little boy watch this. I don’t know if he knew just how special and rare it was, but I know he enjoyed himself.

When we got back to the room, we were all exhausted but it felt so good to have that moment that we really hadn’t expected to have ever.

The next day we went to Gatorland and it wasn’t nearly as busy. We had a good time walking around and seeing not only gators, but turtle and all sorts of different birds. Benny really took in a lot more than he did the last time we were there and it was great to see him actually LOOK at the animals and get excited.

After Gatorland and lunch, we went to a special spot. The Art Of Animation Resort! We checked in and holy cow, was it neat. We had The Little Mermaid Room and it couldn’t have been more perfect! Ben and I figured since Benny really seemed to be enjoying the water and the beach, he’d love this room….AND HE DID!

He got a nap, which took forever to get because he was so wound up and then we went off to Disney Springs. We took the bus from the resort to there and while it was nice, I just don’t think we’re bus people, hah! It was so busy that we decided to go right back to the resort and eat dinner. I didn’t realize how busy everything EVERYWHERE would be, but we got to sit down and enjoy dinner and each others company. I even got to have hot chocolate as we strolled around the resort and checked out all the different characters that were around. I really liked the Cars area.

The next morning was DISNEY! Benny’s first trip! I was so pumped and hoped it wouldn’t be too busy, but man, was I wrong. We went to my favorite ride first, The Carousel Of Progress. We sat right up front, I didn’t want Benny to be distracted by other people and he really liked it! I was so happy. I’ve watched that ride on YouTube I don’t know how many times, haha!

It was so busy, we decided that we would just knock out our favorite “had to do” rides and then head out. I ended up getting us a Fast Pass for It’s A Small World and I’d never done that before, but it worked! It took us about 3 minutes from the time I got the fast passes to when we got on the ride. We sat up front again and I’m telling you guys, I’ve never seen Benny react to a ride like this. It was amazing. He was squealing and clapping and he was just filled with so much joy. THAT is what is amazing about being a parent. If I could hold that feeling forever, I would.

We had a little lunch and went to The Country Bears Jamboree as the last thing we did. We wanted to do Pirates Of The Caribbean, but it was down for remodeling. I guess that’s for another time!

Ben and I weren’t sure what to do the next day or so, we initially wanted to do Epcot or Universal and after The Magic Kingdom and how busy it was, we thought it best to not do any more theme parks.

I mean, Benny loved the beach and we were wanting to make our way toward home so, let’s go back to the beach!

The next morning we woke up and went back to the beach and stayed another night. It was just so relaxing and we ate at what became our favorite place on the trip. It was an Italian restaurant called Port-Fino. It was dated as could be, but it was charming. Benny did a bit of charming himself while he was there. The ladies couldn’t believe how well behaved and cute he was! They also were thrilled he ate so well, haha! It was really one of the best moments on the trip and there are so many great moments it’s hard to pick the best one.

I’m just so glad that Benny enjoyed himself. He of course had a few toddler moments where he just was so tired or hungry that he couldn’t help himself. Overall though, I don’t know of another kid that would have been as good as he was and I’m not just bragging, I’ve never seen another kid quite like him.

Everywhere we went, I could see the wheels turning for him. I could tell he was getting something out of what we were doing and when you’re on a trip, you get to see new things come out of someone, which we did with him.

If you’ve made it to the end, thanks! I know this one (like all of my posts) are lengthy. If you haven’t made it to Benny’s World Facebook, head on over for all the Spring Break photos!

In other Benny related news, he has a speech therapy evaluation at his doctor’s office downstairs at the end of the month and the day before his evaluation is his meeting with his cardiologist.

We’re hoping to take another trip in April to go out West for some more adventures, but we’ll see!

Until next time!

Spring can’t come soon enough…

Hey everyone!

I hope today finds you ready to have a great weekend and thinking forward for Spring! 32 days away, and I’m counting!

I’m ready to get out and enjoy good weather and see what we can get into!

Benny is currently sick with his very first cold this winter. It’s very mild, but I noticed it yesterday when we went to Chuck E. Cheese for lunch he didn’t seem his typical energetic self. He’s in good spirits, I imagine he’ll be over it by the beginning of the week.

Today, I’m finally getting to write because I’m slacking off with my chores (because I somehow pulled something in my back). I’m honestly amazed this doesn’t happen more often as much as I carry Benny and a diaper bag loaded with every item possible!

Yesterday was Benny’s second physical therapy session. It’s in the same building as his pediatrician so it’s super close. He did really well yesterday even though I could tell he wasn’t feeling the best, he powered through. He does a lot of things that he did in First Steps, which is good to start because I know it’s familiar to him.

I’ve been working as much as I possibly can with him still doing various things and it’s very hard work, but fun. I try to make it fun as much as possible. I don’t know exactly what I’m doing, but trying to follow what his great therapists did with him. It’s not easy and I know just a little of what work goes into what they do. They are miracle workers.

We’re still only one therapy in and edging into 2 1/2 months out of First Steps. It’s rough. Stuff just doesn’t fall into place when you’re done. I’ve made phone calls and follow ups and it takes a lot of effort to make sure you’re not forgotten. I don’t know how long it will be for Benny to get into some of these therapies, but next week we have an evaluation at Ball State for Speech. I’m hopeful, I know it won’t be what he was use to, but I know Benny will adapt and do his best. He’s such a hard worker!

Earlier this week we finally got a tour of Behavior Associates of Indiana ABA Clinic. I literally called this place the day after Benny got his autism diagnoses and after calling every week since, we finally got in for a tour! I was told it was a 2 year wait. Can you believe that?! You can’t even get a child tested for autism before 3. So there was nothing we could have done to get him on a list any sooner. But, I wanted to take a tour to see if it was even a place that Benny could work well in.

It was nice to meet with the lady that runs the operation, her son is autistic and it’s nice to know that someone who has a loved one effected by autism is being cared for in the same place. When we met with her, Benny went right up with his arms in the air to be picked up by her. She said, “Oh my goodness, he is such a doll baby.” It made Ben and I feel good that Benny really showed how much he’s grown and can interact with others. He’s really been doing great. She told us that she wanted to make sure all of our insurance worked out first, but that she wanted to put Benny on the list and to call her back in a few weeks, that she thinks she’ll have something for us. I truly think that Benny’s personality makes a difference. Benny got to go play while we toured the facility and he had such a blast. I am really optimistic.

Last Wednesday, we went to The Old Spaghetti Factory with Benny and we got to sit in the caboose (We called it “Trolley” for Benny). It was so neat to see him be excited about where we were. After we went to Riley Children’s Hospital to get Benny an echo cardiogram that was suggested initially by his geneticist and then by the doctor that diagnosed his autism. We really didn’t think much would come of it, but we were glad to be checking what we felt was the last testing anyone has said they thought it needed. While we were there, one of the nurses brought in another nurse and they both were talking to each other, saying “Did you see that?” “Yes, I do”.

Ben asked what they were talking about, but was fast told that the doctor does a better job reading things and gets back with people quickly. We went home that night and I didn’t think another thing about it. The next day as I’m getting Benny a nap the phone rings. It’s the doctor that diagnosed his autism. She says they found something. My heart sunk and my lunch wanted to come up. My immediate thought was, “Why can’t things just go easy for this kid?” She tells me that Benny has a mild case of left pulmonary stenosis. She briefly tells me what it is and that she wants to refer Benny to a cardiologist to be seen every few years or so.

I had a hard time when I got off the phone with her. Even though she said it was mild, I just couldn’t help but cry. This little boy has been through more in his 3 short years than I have in my entire life. He’s so strong and has such a great disposition. Hospitals and therapies and what I can only imagine is a strange and sometimes scary world. Ben and I have done the best we can to keep him included in things and let him drift into our world while still feeling comfortable in his. I’m starting to see him come more and more into our world, but still in his own way. He’s noticing things he didn’t before, like kids. He still isn’t going up to a kid to play, but he notices more. He wants to interact more and have more interaction with others.

I think it was hard for me with the echo results because someday, I won’t be here and my son that is non-verbal now and can’t point to what hurts will someday be in a hospital for something and I just can’t help but wonder if he’ll be able to communicate in some way. I know its most every parents worry about their children when they pass what will happen, but cognitively how will he be? I just want the best for him and honestly the news everyday horrifies me so much I can’t even hardly bare to read it.

There is so much I want to say, but I want to leave everyone with something that has effected me this week.

Think about what you say. Think about who you are talking to. There is a battle going on inside of all of us that outwardly might not be seen. Uplift people the best you can, even on your darkest days.

Love comes in all shapes, sizes, colors, nationalities, sexes, religions, genetic differences, different eye color, pink hair, no hair, missing teeth, missing limbs, extra limbs.

We are not to judge, we are HUMAN…everyday we are all here SURVIVING.

Choose love.

Until next time….

What ends at the beginning…

Happy New Year from Benny’s World!

We’re 2 days in and it’s been BITTER cold! It’s for sure reminding me of the weather when he was born. The windchil on January 7th, 2015 was -15!

In 5 more days, I’ll have a 3-year-old. Oh man! How exciting! There’s so much going on and yet, we’re at the end of one journey and waiting on another.

One by one, we’re saying “goodbye” to people who have becoming a part of our family in the last year or two. First was Benny’s speech therapist a week before Christmas and today was his occupational therapist, Morgan. It wasn’t easy saying goodbye today, so we didn’t! Maybe we’ll see her someday, somewhere! Friends on Facebook is where we’ll keep in touch and that’s great. It’s not easy to just let people in to your house, especially when you’re me!

Before Benny, I would dodge the door and do my best to not have company. Letting someone you’ve never met in to your home weekly to work with your child is different. You suck it up and you do it. I know at times, I really needed them. I’ve watched Benny grow with them, each in his own way. Miss Morgan today got a few kisses from Benny. She brought him a birthday present, a big pink exercise ball of his own! He always has loved playing with hers, and she got the perfect present for him! She knows he loves to bounce! She also brought vanilla cupcake flavored goldfish crackers. She knows the way to his heart is through his tummy and his favorite snacks of goldfish and cupcake? Hello. He was in love, thus the smooches he kept giving her!

We will miss you Morgan, you were always so much fun and I love your laugh! Also, thanks for talking to me and being a pal! You’re doing a great job and I envy the families that will get to see you weekly!

Tomorrow is Miss Carole for Benny’s last physical therapy. It chokes me up just trying to write this. I will miss her so much. She has been the best advocate for Benny and has helped us out more than she will ever know. If it weren’t for her, I’m pretty sure we’d be lost. She has not only helped Benny excel, but has helped us with giving us tools and information to help Benny.

It’s going to be the hardest not having her come over and us all talk about our favorite places to eat and all the stories we’d share. I will continue to send her videos of Benny and maybe someday, we can all go out to get a bite to eat. I know that’s easier said than done, but she’s just been such an amazing person and what’s more to me, is that she cares about Benny.

He was 8 months old when she first came to our home. I wasn’t sure what to expect and we weren’t sure what was going on with him. Life before a diagnoses, was scary. I wasn’t sure what was going on, but I knew something wasn’t right. She has brought out a confidence in him that is amazing. She pushes him and he does it. There have been times where he wasn’t feeling it, and she knew it, worked around it and he did great and even turned his attitude around. She knows what she’s doing.

I just wish we could hold on to this just a little longer. It’s a selfish feeling. There are kids that need help and while Benny isn’t done with therapy in his life (far from it), it’s been great for us and Benny. If anyone ever questioned me about if First Steps is worth it, IT IS. No doubt, you will see a change in your child. It didn’t fix anything for Benny, but has helped him work on things and honestly, I never thought I’d see my son walk. He still stumbles and falls and has problems with things, but he can walk.

I choked out to Benny today, “One by one they all go away”. I explained to him why and he seemed to understand. I know we will go on to a different path and meet new people, but I will never forget Sue, Carole, Michelle and Morgan. They have impacted our lives and gave us hope when some days I didn’t have much.

Today I am sad, but I know I will keep working with Benny and continue to do my best as his mommy to get him the help he so deserves and needs. He is the hardest working kid I’ve ever seen and he’s had a big hill to climb and he has many more to go. I don’t know what to expect for Benny, the only thing I know I want from his life is for him to be happy, have dignity and be loved.

Someday I won’t be here and I hope and pray that where ever he is, he will remember me and know I loved him and did the best I could. Isn’t that what all parents want?

Benny is my legacy. I have nothing else left in my life to show for, but him. I’ve done nothing special in my life. He is what I’ve poured my everything in to the last 3 years. I feel I’ve failed him on so many levels, but I try. I try to learn from my mistakes and hopefully someday, I’ll have it together, haha!

It’s insane how time is just going by and it’s wonderful and scary all at once. More therapies and we’ll be trying ABA. His autism diagnoses will hopefully help us get him more help and hopefully it will benefit him.

I am so proud of him and I know he will be the best Benny he can be. I sometimes fall into self-pity and have to snap out of it. “My child is alive. He is happy.” I really feel terrible about myself when I get into a hole, but it happens. I think about the “what if’s” and what I feel “the should a’s” and so on. It’s selfish, but it’s there. It welcomed me on Christmas Eve night as Benny had a potty accident in the tub. “Will I be cleaning up like this forever?” Yes, he is only just a toddler and yes, I understand some children aren’t potty trained at this age, but I slip into these thoughts sometimes when things happen. It’s just me being honest.

I love him. He is gentle and sweet and loves to laugh. He has taught me more than I will ever be able to teach him. I cry some days when I think of how old I am and the years I am taking away from him of not having a mother. I just hope I can leave this world and he will be taken care of. It’s a selfish feeling, to feel like when I’m gone no one will love him like I did. Can anyone love you quite like your parents? They created you, helped you grow and now here you are.

Anyway, here’s to a good year for us all…and to you Benny. Mommy loves you and I hope I can make your proud. I’m trying.

Health and happiness to you all!

 

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!

 

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!