My Johnny. My Xander. My why.
I have said it before and I’ll say it again. When I first started teaching Special Education, never in a million years did I think that someday I would have, not one but TWO kids that would need Special Education. God only gives you what you can handle but juggling ALL OF IT, is hard. No, not just hard… emotional, draining, overwhelming, tiring and confusing. But it’s also amazing, rewarding, unique; and all those little accomplishments that your kids make, are yours as well.
I realized I haven’t given a recent update on my Johnny since I started this blog a little over 3 years ago! The start of this blog was because of him. Due to his speech delay, Johnny and I were both feeling extremely frustrated and I needed an outlet. #Blogging.
Johnny is the sweetest little boy but when he gets mad, there is no stopping this kid. He is my sour-patch kid. 100%. Xander is my 2 year old bull in a china shop. He’s lucky that he’s absolutely adorable and he knows it!
Johnny is now 5 and is making SO much progress in speech, occupational therapy and in physical therapy. He is in a “Flex-Ed” Kindergarten, which means he is one of six special needs kids in the class and the other 12 children are “general ed” kids. Johnny was in Early Intervention, starting at the age of 18 months. He wasn’t a babbler, no jargon, no language at all. After getting him evaluated, I found out he needed all of the above services. Being a Special Ed Teacher, I told the agency, “give me ALL the services!” If I wasn’t a Special Ed Teacher, I know in hearing that your child is delayed in all areas and needs all these services is extremely upsetting and difficult to process. But, to be able to get the services that he needed to help him develop the skills he needed is… priceless.
I never felt like I needed to explain to anyone the reason why Johnny wasn’t talking because…. I didn’t know! If asked, I would say that “he needs time”. Not every child develops at the same rate. I know some adults who don’t know how to swim but that doesn’t mean they can’t LEARN how to swim. Well, Johnny’s frustration with speech now turned into anger. As he got older, he started realizing that he wasn’t able to communicate his wants and needs as most do – with words. I taught him basic sign language at an early age which helped when he was with me but not when he was at school. We also used a picture schedule and Pecs around the house and at school for him to help communicate. And finally, the words came. The sentences came. The frustration still shows up due to him sometimes not being able to get the words out quick enough but with patience and TIME, it slowly came together.
Johnny is my loving, sweet sour-patch kid. When the frustration comes, the demands come and the meltdowns happen. One mistake that I made with him: whenever he said what he wanted with words, he got. I was SO happy and made a huge deal out of him using words that he was rewarded…. every time. Great for him, not so great for me. As parents, you are still learning and making oppppps. Pulling back the the demands he placed created a whole new meltdown system. Children are sponges and can manipulate you without you even realizing it! A reward system was now being used in school and at home and he had to earn stars to get what he wanted. This reward system is still used to this day. Yoga, self regulation skills, deep breaths and calm down sensory boxes are super helpful when he gets upset. Johnny has come such a long way and I am so unbelievably proud of him. Even when he’s melting down and having “a day”… we all have those!
Alexander James, Xander. My little Bam Bam. He’s now 2.5 years old and a tornado. At about 10 months old I noticed he wasn’t “chewing”. How did I notice? I had to give the kid the heimlich maneuver more than I can count. After getting him evaluated at 12 months old, it turned out he needed: Feeding therapy, speech therapy, occupational therapy and physical therapy. **FUN FACT** I have Ehlers-Danlos Syndrome (EDS). It’s extremely rare and hereditary. Basically, I am beyond flexible, have a “C- spine” and can pop my joints out. As I’m getting older, rheumatoid arthritis has set in and pain. But thats a different blog for a different day.
Back to Xander. He also has EDS. He is very low toned, more so in his mouth and jaw area. This was why he wasn’t chewing. He didn’t have the strength in his jaw and had to learn “how” to chew and to use those muscles. Speech was also going to come slowly to him but I didn’t even care about that. All I wanted was for my baby to chew, to be able to eat without having to give him the heimlich maneuver every time. I would never want to leave him with anyone (besides my mom who is a nurse) to babysit because anxiety would set in, thinking that he would choke if left for 1 minute of taking my eyes off of him.
Being that Xander is low toned, he started walking at 16 months old. His core muscles in his little tummy do not give him the strength to sit up properly, so he’s always leaning or slouching. Physical therapy and occupational therapy has helped SO much with that. With all the services he needs in place, Xander has made huge accomplishments. He is now able to chew “crunchy” foods, words are emerging and his core strengths are developing. A huge help with all the above with Xander; Early Intervention. He is in a school (where I teach) and has made great strides! But with great strides, sometimes set backs start in. For Xander, that would be his language and behavior. His language skills are still emerging but his frustration with not being able to express himself is coming out as WILD. I think my little babe has so much that he wants to say but can’t, and so he’s just on the go and running a mile a minute. Thankfully, he’s in an amazing school where his needs are addressed. Structure, routine, school and following THROUGH.
SOOOO out of my 2 boys, I thought it would be Johnny who I would have to worry most about. At my 20 week anatomy ultrasound, I found out that Johnny had a cystic left kidney and I was sent to a Prenatal Urologist. I was beyond scared, emotional and nervous for what would come next. Johnny’s left kidney was not functioning at all but the right one was. I had to be monitored and go for an ultrasound every 2 weeks to make sure that my little babe’s right kidney was still growing and eliminating urine. Thankfully, it was. Johnny has to be mindful of contact sports, reminders to drink A LOT of water daily and has to go for annual screens. His right kidney is called a “super kidney”. He’s my SUPER, amazing, loving, emotional, caring first baby.
ANDDDD Xander. Born 1 week early, scheduled C-section and is my wild child. There is NO stopping this kid. Alexander had multiple ear infections from the age of 4 months old. Non stop meds, doctor appointments and pain. My little babe has had 2 ear tube surgeries and will most likely need his tonsils and adenoids removed in September of this year. He is the happiest, strongest low toned kid I know and continues to surprise me daily with spontaneous language and skills. I literally want to eat this kid, he’s that delicious.
SO right there is my why. My reason. My two beautiful boys.
After teaching 12 special needs kids all day long, it is exhausting, physically and emotionally draining. But these 2 keep me going. My students keep me going. There are days where I just want to leave it all behind, go to a tropical island and have a cabana boy bring me fresh pineapple drinks all day long……..
BUT. The accomplishments, both small and big are AMAZING. I do not take anything in life for granted. I had a calling early on to become a Special Education Teacher and my boys were given to me for a reason. Everything in life happens for a reason, doesn’t it?! I mean, Jesus did give us his blood… which is wine?! #passthevino.
And for all the special needs mamas out there: you are NOT alone. Us mamas are the ones you can’t mess with, we are the ones who give our children strength, words, needs, more love than they can handle and they give us the courage to keep on. To keep on advocating, to keep on asking the questions, to keep on wanting to know what’s going inside of their beautiful little minds and to keep on growing, with them. No matter where in this crazy world they take us we will always be there for them. WE GOT THIS.
I have 3 songs that I sing to my babes. We have Alexa play them on the daily. You should too. Pick these or your own. My whole world is dedicated to my babies, my students and to those I LOVE. “Music is the universal language of the world”.
- My Wish by Rascal Flatts,
- A Million Dreams from the Greatest Showman
- Hypnotize by Biggie Smalls.