Special Needs Baseball was today. The picture above was taken three weeks ago… I LOVE THIS picture and was hoping to have another one similar taken today.
We have been once, and Aiden enjoyed it. I thought this would be a fun activity, and low stress sport for him to try. We have been hesitant to sign him up to play sports because usually half way into it he changes his mind. Honestly, it’s a lot of work.
This morning when I asked Aiden if he wanted to play, he said, “No!” He said, “No”, three times. He says no to a lot of things, but usually ends up having a good time. So, I took him any way. Lee could not go, Gavin went with me.
The games are supposed to start at 9:30, but usually run behind. He doesn’t do well with waiting, at all. So, I planned on getting there at 9:45. Our morning had run pretty smoothly, The weather is gorgeous, and the boys were getting along well. I was thinking today would be a good day!
Since I’m always late we didn’t get there until 10:00, and the game had already started. They added him to the roster. His team was in the outfield. Naturally he wanted to hit the ball, NOT be in the outfield. He would need to wait.
Trouble was brewing…
He grabbed a bat and charged forward for his turn up at bat. It wasn’t his turn. He should be in the field. He did not care…
The next 2 hours (actually only 20 minutes) consisted of me trying to hold him back while he screamed, thrashed, head butted, and tried to bite me. He is strong, weighs 110 lbs., and is very flexible. It takes a lot of strength to hold him. He also yelled at other kids and told them to stop looking at him or he’d slap them in the face. We were in the dug out…the others were scared to come in. Other children and young adult with special needs scared of my child.
Normally, when something like this happens at least one person steps in to try to diffuse the situation. Not today. Everyone was either too scared to come near us or too busy. Why did I even bother to try this today? If he wasn’t so big, I would’ve carried him to the car. If it wasn’t frowned upon, I would have dragged him there!
Embarrassed. Angry. Worn out. Wrists hurting from trying to hold him still.
Gavin tied to help. Aiden kicked him. Finally, the screaming turned to tears, and he calmed down enough to say HE HAS TO PEE…Guess who’s turn it is FINALLY UP AT BAT????Yep-of course! He opted for the bathroom instead. Refusing to let me take him, Gavin stepped up.
I waited outside the bathroom, letting a few tears fall, and wiped them away by the time the boys came out. Aiden was still mad at me. Gavin could tell I had been crying. I don’t want him to see me cry over his brother, and think for a minute that Aiden is a burden to me.
I walk ahead of the boys to the car. Crying. I needed to cry. I rarely cry. I feel like crying at least once a day, but instead tense up and clench my teeth together. My front teeth are literally crumbling, and chipping…a recurring dream from my college and young adult years is becoming a REALITY.
We are finally in the car and I can’t stop the tears. Aiden is still mad. Gavin is trying to soothe both of us. I explain as best as I can.
Reality…is that I love Aiden so much. And believe in how capable he is that I want him to enjoy the same things as “typical” children. Maybe, sometimes I try to force it, while in the back of my mind, I know it will be a disaster…
Reality…I will probably continue to do this until we find just the right activity or sport that “clicks” with Aiden. “I’ll try anything once is my motto”, when it comes to getting Aiden involved in different things. I believe baseball may have too much downtime for my kiddo at this time!
Reality…Gavin, my thirteen year old shared with me how embarrassing these episodes are. Not “because my brother has special needs, but because I feel like people are looking at me wondering why I’m not helping.” Gavin did ask me about four times if he could help. He is a precious, sensitive child, who is more mature in some ways than I give him credit for.
Reality…I told Gavin not to worry about what other people are thinking. I explained that we should always ask what God is trying to teach us through these situations. Perhaps its to teach us to have more empathy when we see others who are struggling with their children. Or not to judge the child, and just assume they’re being “bad”.
Reality…We don’t understand why Aiden behaves this way. Overstimulated, anxious, can’t verbally express what he’s feeling. Aiden doesn’t even understand why he behaves this way. He is the one person who can brighten my day like no other. And the one person who can almost bring me to my breaking point. I have faith that there is a lesson in all of this.
Reality…Daily, we have extreme highs in our little family. Filled with love, hugs, laughter, and silliness. We also have extreme lows. Complete with hateful thoughts, hitting, screaming, guilt, tears, defiance, power struggles, you name it!
Reality…We have the overwhelming, unending, grace and mercy of our loving Heavenly Father, which keeps us going. Keeps us forgiving. Keeps us loving. Keeps us seeking what He would have us to learn through these trials. Keeps us finding the humor. Keeps us focused on what’s important. And most of all, keeps ME focused on Him.
Reality…We don’t stay mad for long! Within a few minutes we were at the park having a grand time. A little bit later while waiting in the car for Grandma, we “enjoyed” a trumpet performance by Aiden😩.
Aiden Fisher Waters, is ten years old, double digits! How can it be? Bittersweet, growing up…yet still my baby.
Hitting double digits is a major milestone in the life if a child, and their parents! I am able to share my thoughts regularly on this blog, SO, in honor and celebration of Aiden turning ten years old, I thought I would ask those closest to him to share what they have learned or how their perspective has changed over this last decade having a loved one with special needs, or just to tell what they love most about Aiden
Oh my goodness how do I even begin! When I think about Aiden it makes me smile. He has brought so much love and happiness into our family, and yes, even a lot anxious moments! He is definitely an encourager. If he thinks that I can’t do something he’ll say, “You can do it Nanny, come on, try!” And if I can’t do it on my own he’ll push me through whatever it is…. literally, with both hands! With every birthday he gets to be more special. He is so smart and if I can’t understand something he’ll go around a different way to try to explain it to me. He’s very intelligent, especially working with his Nanny’s mind🤪. I never know what to expect out of him, his words or his actions. He’s always surprising me!! He keeps me laughing and he puts things in perspective for me in this life. He shows me what is really important and I thank God that he gave him to all of us ❤️❤️❤️.
From Aunt Tammy…
I think the biggest way Aiden has changed me is in how I view others. Before Aiden came into our family I saw individuals with DS as just that – he/she has DS. Aiden has taught me that DS is just a part of a person – it doesn’t define them. Individuals with DS are just that – individuals – different personalities (some with BIG personalities like my nephew!), different likes and dislikes, interests, strengths and challenges. The other big change – it’s got to be the laughter. Anyone who’s ever been around him for any amount of time knows he loves to make you laugh – and the things he comes up with! If I ever need a laugh at work, I just look at Jennifer’s Facebook page 😊! She probably doesn’t think it’s all funny – he’s not always happy and he has difficult times, but who doesn’t?! Yes, having Aiden in our family has changed all of us, I think – for the good – and I don’t think he’s quite finished teaching us yet!
The question was how has Aiden changed my life…he has filled my life with joy and happiness. I love to hear those words roll off his tongue when he says he says, “granddaddy!” I love his laugh, I love everything about him, and I hope one day I can see all the good in folks that he sees. He has truly blessed my life.
Having a loved one with Down Syndrome has changed my life by showing me how life should be. To love with no bounds, throw rules and expectations out of the window, and, just love. Being in Aiden’s presence, has shown me that no matter how the world may see me, in his eyes I am perfect. He is the true meaning of unconditional love, just the way God intends. When I am at my absolute worst, Aiden can make me forget the cares and problems of this world…. he makes me stop focusing on MY problems, even the aches and pains go away, replaced by such an overwhelming love, and a feeling of complete acceptance and such joy!
My perspective on Aiden is….That he has been a blessing to the family he was born into, and to all that has come in contact with him! He always has a smile, always happy…Well, not always happy, sometimes he can be a little rowdy at times…lol….Everyone loves him, sometimes he gets Jennifer’s phone and calls me, or other people by mistake….He’s a blast! We all love him. There are many children with Down syndrome around the world, looking at pictures, or seeing them on video…They all have one thing in Common….They all have great big smiles from ear to ear. Well, he loves everyone! He likes certain foods….Mangoes…..Blueberries, but most especially he loves Spaghettio’s with MEATBALLS, nothing else will do!
The main thing being Aiden’s dad has helped me learn is the importance of not caring what others think. I used to get so mad and embarrassed when things like tantrums, or him being loud were done in a public setting, drawing what I perceived as negative attention from others around us. Having a child with special needs is humbling, chipping away at my pride.
From Brother (Gavin)…
In true 12-year-old boy fashion, when I first asked Gavin about how his life had changed since having a brother with Ds, he response was, “Why are you asking me this?, I don’t know.” So, I tried rephrasing, asking how he thinks his life is “better” having a brother with special needs? Through a smile and a chuckle, his reply, was…”It’s probably worse!” LOL!! Okay, third time’s a charm…I ask, “How could you encourage someone, or reassure someone who just had a sibling born with Ds, that everything would be okay?” His answers were still not very encouraging or reassuring, so I told him I’d get back to him!
Finally, when I was asking Lee what he had to say, Gavin was listening in, and was able to put some thoughts into words. He shared, that he enjoys playing video games with him sometimes; He’s funny sometimes; he looks up to me sometimes; He likes his funny stories; He likes cuddling with him; He likes the happy face Aiden has when he gets off the bus in the afternoon.
Aiden has changed all of our lives in countless ways, which is one the reasons for my having a blog. I love to connect through sharing the joys, challenges, struggles, triumphs, lessons and LAUGHTER that my family and I have been blessed to experience! My prayer is that God uses what I share to be a blessing to others, bring a smile to someone’s face, to shine light on how amazing individuals with Down syndrome are, and all that they have to offer this world!
Stay tuned, summertime always provides plenty of blog-worthy material .
After an eventful morning, which included Aiden escaping our hotel room, we are finally on our way to the NC Zoo! The weather is gorgeous, and we are all excited. UNTIL we pull in the parking lot, that is. Aiden begins, saying repeatedly, “No zoo, go home.” This happens regularly when we go somewhere he hasn’t been before, especially if it looks crowded. One of us usually stays behind with him and gently cajoles until he’s ready, to move forward at his own pace.
I’ll share some info that perhaps you aren’t aware of… Individuals with Down syndrome often exhibit many of the characteristics, and issues as someone on the Autism spectrum. Here are a few that we see regularly in Aiden. We try to factor all of this in when going somewhere with him. Quite honestly, it can be very exhausting, and patience have a tendency to wear thin early on. If Aiden senses that our patience are wearing thin, well– game on! The balance between which behaviors to, “let go”, and which ones need immediate discipline create constant inner dialogue, and second guesses concerning decisions made.
sensory aversions to crowds, or loud sudden noises,
difficulty with changes in routine or when entering unfamiliar surroundings can cause non-compliance, fearfulness, or anxiety
Disruptive behaviors such as, yelling, throwing objects, or physical aggression
A few weeks before the trip I tried locating either a free or inexpensive second-hand stroller that would accommodate a 4ft. 3in. child that weighs 100lbs. I had no luck! I knew the zoo rented strollers, and wheelchairs, we would just have to make-do.
Keeping in consideration; tired child with some anxiety, who is prone to taking off running, who is too big for a stroller, wall to wall people, lots of hilly terrain, we begin our adventure on the Africa side of the zoo.! I’ll just share a few highlights.
Aiden is MUCH too large for the stroller
We end up with a wheelchair
Aiden is determined that rather than me push him in the wheelchair, he will do it “by myself”, which presents a problem to everyone around us, because he cannot steer! I should have just let him, he could have cleared the path for us! LOL!
He finds it amusing to keep locking the brake on the right side of the chair! Nothing like walking up and down hills in a crowd, and suddenly veering sharply, and skidding to the right because he’s applied the brake! Of course, he is wanting a reaction from me. He keeps looking over his shoulder at me, to see if I have one. I try my absolute hardest NOT TO REACT.
Looks at elephants for one minute before seeing a tent “prop” that is super fun to run through, behind, and around for about ten minutes.
Mom and the other boys grab snacks, knowing Aiden will be occupied with those for a while. Good call!
If he needs to blow his nose, he does it, tissue or not. Mom has a sweatshirt she’s not wearing, we use that. This happens several times throught the day. I TRY NOT TO REACT
When his food is gone, he begins sneaking the Gavin’s and his BFF’s. He has eaten entirely too much junk food and sugar. BUt it has kept him in the chair
He keeps saying, “I SOOO hungry”
We are at the zoo, he is not interested in the animals.
Mom woke up with larynghitis, and he never said anything about it!
He has pretty much stopped pulling the brake on the wheelchair. Now he is running his hand along the tires as they roll, looking back at me, and then licking his hand. I have no wipes, or hand sanitizer. I TRY NO TO REACT
We are at the zoo, he is not interested in the animals.
Having a child in a wheelchair, that is not handicapped in the sense, that yes, they can walk, will get you lots of looks. The majority of those looks, are of understanding, accompanied by a smile. However, there was one lady, I wanted to smack! If you have a wheelchair there is a separate line for the shuttles/trams, which does make your wait time shorter. I can feel judgemental eyes boring into me from a lady in the main line. She is looking, over at us, rolling her eyes, and shaking her head. I wanted to walk over and ask her if she’d like to wait in line with him for two minutes and see how that worked out for her. Ain’t nobody got time to deal with people like her!
Spitting. Aiden is obsessed with it. He is now leaning forward and spitting from the wheelchair about every 5 minutes. I TRY NOT TO REACT
We’ve been through Africa, and made it to America.
It’s lunchtime in America. Every dining option has extremely LONG lines.
I’ve been doing low carb. Everyone else wants pizza. Pizza and low carb options are not in the same restaurant. I’m not waiting in two lines. Pizza it is! Low carb it ain’t! I wait in line at least an hour for the pizza. Ruin my low carb mindset for the rest of the day. Coke, cotton candy…I’ll take it!
Aiden starts the “go home’ routine again.
It starts raining
Patience are starting to run out
Feeling frustrated that we didn’t get to see hardly any of the animals in America.
Feeling disappointed that we can’t ever seem to have that story book vacation experience
Pity party doesn’t last very long.
Watching Aiden have a great time simply ducking and walking underneath a sign over and over again puts things into perspective
Two easy-going friends that are just happy to be together no matter what we do, and a loving, patient mom/grandma who is fun and helps in whatever way she can, puts things into perspective
We leave the park about 5:00
Taco Bell/KFC combo for dinner. Something for everyone!
Aiden is wired! Being silly and running from me in the restaurant. I am not amused. Food comes, and he settles a little bit
I have two complete strangers come up and tell me how handsome he is, and just beam with joy while they are looking at him. And a young boy about ten is watching him be silly, and keeps smiling. Perspective. Maybe we made someone’s day or brought a smile to their face.
I drink two more Cokes (I needed the hard stuff)
While exiting the bathroom stall, Aiden thinks it proper to lay on the floor and crawl under the door. There are two other women in the bathroom. Again, I’m not amused. I use my firm mom voice, and of course he starts getting angry. I’m using my feet and legs to keep his slithering self in the stall. I realize that the lock is loose on the outside of the door, so I am able open it. He looks amazed, like I had done a magic trick! LOL
I have one frayed nerve left. I snatch his hand and kind of jerk him out of the bathroom. I KIND OF REACT, but not like I really want to.
Once outside he squirms out of my grip and runs into the parking lot!!!! Patience/Nerves officially gone. I get him back to the car, and spank his butt. YEAH, I REACT
He lashes out at me kicking, screaming, scratching, trying to bite.
I grab his jaws and say, “I’m tired of this (sh**) expletive. I curse in front of my mom, Gavin and his friend. UGG—I apologize
He refuses to buckle his seatbelt for about five minutes
FINALLY head towards home
Remember, I said mom had laryngitis? She had it all day, barely a whisper, and Aiden never said a word about it, until the ride home.
Out of the clear blue- he says, “You deaf Grandma!” And he starts using sign language to communicate with her. We completely crack up, laughing until we cry.
You have to love a good belly laugh right after a complete hissy fit and melt-down. I love how God orchestrates those moments. He meets us where we are!
Some take home points from this trip..
Aiden will not go back to the zoo for at least another five years.
Hotels need to have rooms with special locks on the doors for families with small children, or children with special needs.
I am going through Aiden’s doctor/Physical therapist to get a Convaid Cruiser stroller that will meet our needs for years to come. And Insurance may cover it!
Kleenex, wipes, extra change of clothes are a must. I think I’ve been in denial that we still need those things on a trip since we don’t have a toddler any more.
Once a friend has traveled with us, survived, accepts our craziness, has been spit at by friend’s brother, and witnessed friend’s mom in meltdown mode… well, they will be stuck with us for a long time! Thanking Gavin’s friend, Gardner!
We all do have story-book vacations…They just may look a little different from what others are quick to share. You relish in the small delights, accept the reality of the situation, be grateful that you can go anywhere at all, give thanksfor those who sojourn with you, embrace the chaos, and above all else, choose joy!
The best of times…planning a trip to the NC Zoo, with my Mom, Gavin, Gavin’s BFF, and Aiden! I love a good road trip, my mom is a great travel companion, the boys typically do well in the car, and we hadn’t been to the zoo in about six years. Promising weather forecast, and a hotel with a pool reserved with promise of swimming upon arrival, added to the excitement of our journey! Visions played in my head of the five of us strolling along, taking turns pushing Aiden in a stroller or wheelchair, admiring all of the scenery and being able to actually see each animal exhibit up close and personal.
It was the worst of times…found out during registration, that the hotel was COMPLETELY booked, which meant the swimming pool would be COMPLETELY full. We had used the swimming pool as bribery for Aiden’s behavior throughout the whole drive. Uh-oh, I knew trouble was brewin’! Wouldn’t you know it, out of the three entrances to the hotel we walk into, it’s the one directly in front on the pool entrance. NO WAY, NO HOW, did I want Aiden to see the pool. It was jam-packed and there was no way I was going to take him down to swim. As we walk in, we all kind of crowd around him, and get him interested in the elevator so he doesn’t notice the pool! Score! Well done team! He only mentions swimming once, and I was able to get his mind off of it.
***As a side note…can I just tell you how nerve-wracking it is to have a child with special needs, prone to escaping, in a hotel room? Once, we stayed in Myrtle Beach, I was so paranoid, I put furniture, an ironing board, and suitcases in front of the door. Figuring, if he tried to escape I’d at least hear a lot of commotion. I wish someone would invent a portable lock for those types of scenarios***.
Back to Asheboro… we only had two beds, and no larger rooms were available. Again, being the optimist, or maybe just someone who’s always in denial. I did not foresee any issues. Gavin and his BFF would sleep in one bed, mom and Aiden in the other, and I’d sleep on the loveseat. OH wait, there was no loveseat! Just a chair!! So, I end up on the queen sized bed with Aiden and Mom. We hit the sack at about 10:00. Naturally, Gavin and BFF, have the giggles and want to stay up as late as possible. In addition to the giggles, they have the, “gas”, flatulence, that creates even more silliness! This does not go over well with Aiden…he kept screaming at them, “NO MO TALKING, NO LAUGHING, YOU HUSH IT!” The whole scenario becomes quite comical to me, and I get the giggles…Then he gets mad at me!! We’re extra close together in the bed, so my laughter is is shaking the bed a little and jostling him! Lol…So he’s fussing at me! He’s saying, “You stop being funny on me!”, and the he’d mock me, while fake laughing and shaking his body. It really was hysterical! Ahhh, I think everyone is asleep by 11:00. Sadly, Poor Aiden has an extremely rough night, tossing, turning, flipping, flopping, and talking in his sleep.
We’re all bright -eyed and bushy-tailed the next morning, by about 7:00, except for Aiden. It’s dark in the hotel room so he keeps trying to tell us all to go back to sleep, because it’s still night-time! In case you can’t tell, he’s quite the bossy fellow. He does get in a better mood after about thirty minutes though. We hit the free breakfast before it’s too crowded. Shortly after eating, everyone begins taking turns getting ready in the bathroom. This is where things go from okay, to really bad. I am the last one to take a shower. I announce that I’m heading into the bathroom, go into the bathroom, undress to shower. Mom then, knocks on the door…”Is Aiden in there with you?”, she asks? I crack the door open and reply, “Um, no”. She says, “He’s gone!” and proceeds to run out the door! I stand there frozen, with no clothes on for a few seconds, collect my thoughts, get redressed, and head out…
Aiden has run off a few times before. 911 has been called twice, and it’s extremely scary. I’m always fearful that whichever direction I start searching for him in, that he’s gone the opposite direction, having more time to get even further away. My intuition told me that he was playing on the elevator, but I also could envision him taking the elevator to another floor, running around, looking for our room. Plus, I figured mom had the elevator covered. I decided to take the stairs and look down each hallway. She didn’t have her phone, I didn’t have mine. We were wandering around not knowing what the other was doing. I have to commend Gavin, he told several women in housekeeping that his brother was missing. Another fear…what if he had gone OUTSIDE? Do I run outside looking for him? I did run into the parking lot for a second, but saw no signs of him. I had been searching for about 10 minutes, when the gravity of the situation really hit me. Someone from the hotel management asked me for description of him. I say, “Red hair, about “this” tall, chubby, and he has Down syndrome.” I added, “We may need to call 911 if he hasn’t been found in a few minutes.” Hearing those words come out of my mouth was almost surreal. I felt the sting of tears welling up, but they never surfaced. I could sense the compassion coming from the woman I was talking to, and it was a blessing to me. I’m off and running again…FINALLY a few minutes later, a man in the hallway asked me if my son had blondish brown hair, and could be carrying an ipad. YES, of course! He told me that he had seen a woman who fit Mom’s description with him on the elevator!!! Praise God…I head back to the room. they’re still not there, head to the elevator, and who do I see, but Mom, with Aiden, and the ipad. I am speechless, and just stare at him until I can collect my thoughts, and decompress, somewhat. Y’all, it turns out that my Mom had found him right away on the elevator, and had been trying to find me to let me know! She said that she thinks he had just been riding up and down in the elevator the whole time because when she found him, he was casually leaned against the wall with his feet crossed, watching his ipad. She and I had been completely missing each other during our frantic search. This whole episode convinces me all the more that hotels need to offer rooms that have a special lock, that locks from the inside. I’m certain that many parents, even of kids/toddlers that don’t have special needs, would appreciate that extra safety measure. We have them in our home, and they have provided peace of mind from day one!
We have not even made it to the zoo yet. There will be a Part 2 coming in a few days that covers that craziness… I mean cherished memories! LOL! I appreciate your reading my ramblings, and being interested in our lives.
Yeah, I used to say it….Normally in a joking way about myself or something I did that was “stupid”, about dumb an idea, or a “crazy” incident…”Well, that’s just “R__ed”, or “I’m such a “R”, are ways I would use the word. Never actually spoken about someone with an intellectual disability. Never spoken about someone with Down syndrome. Never spoken in a derogatory way…OR SO I THOUGHT… UNTIL I was privileged enough to give birth to a child who has Down syndrome, WHO, in the minds of countless people would be labeled the, “R” word. Almost instantly after having Aiden, the word began to make me cringe, and feel a certain sadness when I heard it from someone in person, or on TV. I also felt remorse for the times I had used the word so nonchalantly. I JUST found out today that there are memes making fun of people with Down syndrome—UGH— I really wish I hadn’t looked it up! There are some cruel people out there! I guarantee most parents would be hurt if their child were the object of another person’s laugh of the day. So, what responsibility do I have as the parent of a child with Down syndrome? I am not the type to take things personally or get offended easily. So, no, I’m not going to tear into a person or curse someone out if I hear them use the “R” word. I understand that most people who use the word, would never call my son the “R” word. So, I’ll extend grace, and explain why it is hurtful. I’ll educate others on behalf of my son and the multitude of others as to why this word is offensive. And, I’ll keep sharing pictures and stories about my son, and how he is so smart, sweet, and funny. He has changed my world, and believe he will changes this world for the better!
“For you formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made.” Psalm 139 13-14
IS MY CHILD A BURDEN?
Do we feel like we’ll be STUCK with him forever? AB-SO-LUTE-LY NOT. These questions have come up lately. Not directly to me, but in things I’ve read and discussions I’ve had with others. I can honestly say I have never thought for a second that he is a burden, or that he will be in the future. It is an honor and privilege to have been chosen by God to be Aiden’s mom. Will he ever live on his own?I have no clue, and honestly don’t even worry about that. We don’t fret too much about the future around here. God is in control, and worrying neither changes, nor helps anything. I have no idea how much longer we will be on this earth. As a believer in Christ, I know this is our temporary home, we are just passing through. It is my job as his mom to make sure that he is the best version of Aiden he can be. I will push him to learn new things, to become independent, and to ask for help when needed. Heck, the child can already make mac & cheese, sandwiches, toast, pour his own drink, operate a phone, tv, and iPad, vacuum, feed the animals, get his shower/bath ready, and let’s not forget open a can of Spaghettios!
side note here for those that have followed our Spaghettios saga…I just use that word in a general sesne. They must be Chef Boyardee ABCs and 123s WITH meatballs, or his majesty ain’t having them! lol
I’d say he’s well on his way to independence, and might be able to do more that what some teenagers can! If he lives with us forever, I’m fine with that! He is an excellent companion. He is polite, funny, likes to cuddle, he shares, he teaches me something every day, he likes to read stories, and sing songs, dance, he enjoys helping around the house( in his own way!) Lee and I do make jokes from time to time about him living with us forever, but we can do that, we’re his mom and dad. Finding humor, and not taking things so seriously is a survival tool I use each and every day! Sometimes, when Aiden is sitting in one of our laps ,we’ll make a comment about how, “Just picture a thirty year old Aiden doing this too”, and get a good chuckle thinking about it. How long will he continue to wander around in his underwear, climb into bed with us in the middle of the night, run next door rummaging their pantry for snacks? You see all of these comical, sometimes stressful things that he does, make up who he is, who God designed him to be for such a time as this. Frequently, when I feel my frustration rising, or I find myself thinking, “when is this phase going to be over?”. I have to remind myself that from the time Aiden was born, I have said that God is teaching me, and chipping away at areas of pride, taking me out of my comfort zone. Instead of a pity party I shift my focus to what God may be trying to teach me, and how can I use these times to try to learn more about my son, myself, and God’s plan for our lives.
I believe I can speak for Lee, Gavin, and myself, when I say the only possible BURDEN we can come up with is …how much longer will we have to endure Elmo, Barney, or The Wiggles??
la la lala lala la la,I love you, you love me,hot potato, hot potato
“I”LL NEVER and MY KIDS WON’T” Famous last words from when I was an expert at parenting…you know before I actually had kids!!!!!
This is something I’ve wanted to write about for a while, but just haven’t taken the time. I never want to come across as complaining about my child, or looking for sympathy. My intent with this blog from the beginning was to share what life is like with an extra chromosome, to share stories about our crazy life, to vent for my own sanity, to encourage others and let them know they’re not alone, to share what I’ve learned, and what God is trying to teach me, and to give HIM the glory for getting me through it all. And, as I begin to write this, I’m realizing how I need encouraging as well. Sharing my scattered thoughts with you, and reading your responses is truly an encouragement, and I am grateful.
“I”LL NEVER and MY KIDS WON’T” Famous last words from when I was an expert at parenting…you know before I actually had kids!!!!! I’ll never be the mom restraining my child on the floor of a public place while he has a meltdown. My kids won’t act that way in public. I’ll never “give in” just to keep the peace. My kids will know I’m in charge. I’ll never put my kids on medication just to help with behavior…AHHH, how the list could go on. Somedays it seems that I experience all of my “I’ll Nevers” in one day…This past Monday went kind of like this, from what I can remember, anyway!
It is a holiday. Aiden wakes up at 6:00am. He is in a good mood, but ever so bossy. He is relentless when he wants something, won’t stop asking, demanding, hunting me down, pulling me in the direction of said desire. His demands are met, well, momentarily–until I sit down and get situated, then-he realizes he needs something else. His good mood, some deep breaths on my part, and a few short ‘Lord please help me” prayers makes these demands a little more bearable. I believe Gavin wakes up around 9:00am. The fighting and screaming commences at 9:02am. The boys had scheduled dentist appointments that day. One may think that this could be stressful for me, however, both boys really like going to the dentist! And, we usually make an afternoon of it and go to the park or somewhere else enjoyable. This trip I told them they could get shakes or smoothies, and that we’d go to PetSmart.
Aiden knew all morning what we had planned and seemed to be excited about it. The appointment was scheduled for 1:30, in New Bern. BUT, per his usual behavior here lately, as soon as it’s time to get ready to go he starts being defiant and refusing to cooperate. The transition of getting from point A to point B has been very difficult for him ever since he began school. But, I started the process about an hour before we needed to leave. It took more than an hour to get that child ready. Aiden is NOT going to do anything until HE gets ready, It may be the way I word the request, it may be turning it into a game, a call to a special grandparent, or friend…it is a downright crap shoot as to what is going to work on a given day. What has worked other times may not work on this particular day. My body language, and tone of voice can make or break the situation as well. He is very in tune to how others react, and if he senses that I am losing my cool, I can see a certain flicker in his eyes, his demeanor changes, and he becomes even more defiant, and sometimes aggressive. I honestly can’t recall what prompted him to FINALLY cooperate, BUT Praise God, he was fully dressed, teeth brushed, and in the car buckled up by 12:45! The boys fuss and fight in the car on the way to New Bern, which is typical, I am completely aware. The difference is that Aiden can produce this awful, loud scream that will wreck your nerves some kind of bad, even worse, while driving.
I want you to try something for me…Squeeze your eyes shut to the point where you can feel and hear the pressure behind them, clench your jaws together, and lean your head back to where its kind of pushing down on your neck while taking deep breaths—–this is what I have to do to remain calm–of course while I’m driving I don’t keep my eyes closed–but, you get the idea. Lots of tension!
AHHHH…we have arrived at the dentist office! The dentist office of all places is where one of the sweetest moments I’ve encountered as a mom, occurs! I tell ya, I believe if I had taken my phone in **sigh**, and recorded this it could’ve had the potential to go viral…As I mentioned earlier, both boys like going to the dentist. When we go back, the routine is for Gavin to go to an open area to have his teeth cleaned, etc.. Aiden goes to a separate room. I always end up going back with Aiden, and my brave, sweet, compliant Gavin, goes alone. Aiden’s appointments don’t take very long though, so we end up catching the middle-end go Gavin’s. Today, Aiden goes straight into the room, climbs in the chair, and makes himself comfortable! Before the dentist starts, Aiden sweetly says, “Please don’t hurt me.” He gets a little nervous a time or two, and just repeats, “Please don’t hurt me”. He’s so sweet I almost want to cry! >>Side note>> I have had to pee since way before we got to the appointment and haven’t had a chance to go yet. Aiden didn’t want to go in with me, I can’t trust just Gavin and him together, and I hate to ask someone to watch him while I go…so I hold it! We walk over to where Gavin is and Aiden wants to sit on a rolling stool RIGHT beside him. Sometimes, it hard to know whether something will be frowned upon or okay at a place of business…Thankfully, the hygienist said it was fine. I asked Aiden one more time to please come to the restroom with me…of course he said, “NO”. The hygienist assured me that he’d be just fine, that they’d watch him! SOOOO, I go go go quickly to the bathroom. When I come out, Aiden is still on the stool watching his brother…..WHILE HOLDING GAVIN’S HAND. I am shocked! I sit down on the bench to watch, and listen to what’s taking place. He is asking the hygienist all kinds of GREAT questions. Like “what’s dat ting, why you do dat”. And He repeatedly leans over to kiss Gavin’s cheek, and asks, “Davin, you otay?”. He kisses his hand, he hugs him, he tells him when to spit, he tells him that he loves him, over and over agin! He tells the lady that “Davin is his best friend”. I thought she and I were both going to cry…The dentist was watching from a few feet away with the biggest smile on his face. All of the employees were so impressed with how affectionate the boys were towards one another. It truly was very heartwarming!!! I told them that I was impressed as well, and that they should have heard them on the way in the car! LOL… I was on cloud nine with how well the appointment had gone!
A TALE OF TWO AIDENS…CONTINUED
Next stop PetsMart! In previous blog posts I have said that I try not to take Aiden shopping if at all possible…But, because he loves looking at the animals so much, and I ONLY NEEDED four items I thought we’d be fine. He is too BIG for the shopping carts, but I grab one hoping he will “help” me push it. Naturally he runs off to look at everything. Gavin is following close behind, and I ONLY NEED FOUR ITEMS, surely this will not be a disaster. Well, within five minutes, he brings back a handful of items he wants to buy for our pets. To keep the peace, I let him put them in the cart. Then he starts bringing more and more items, the cart is jammed full, and WILL NOT HEAR of putting them back. When I finally get to the last aisle and am looking for a vest that will fit our dog, he starts putting everything he can get his hands on into the cart. I keep calmly telling him that we’re not getting all this stuff. Gavin is trying to talk him into putting it back—nothing is working. I knew it, I knew it, I knew it—- When he realized I meant what I was saying, that a major melt-down would occur. I could feel the tension rising, but tried to remain calm. I started putting items back, he continued putting more in. Then he started trying to snatch them away from me. It escalated with screaming and hitting. I had never had this happen to this extent, with him in public before. Keep in mind, he’s over 4′ tall, and weighs 100 lbs., so I can’t physically move him anymore.. I knew that I had to get him on the ground and restrain him as best as I could. So, that’s what I did…for about fifteen minutes. Him screaming, flailing around, trying to turn so he could bite me, digging is nails into my hands, and kicking me in the head. He’s so flexible, that although I had his arms and upper body somewhat restrained , he could still reach me to kick me. There were people walking by, a couple of employees gave me a look of pity. Although I’m trying to restrain him, I’m well aware that it looks like I’m abusing him! Or on the other end of the spectrum, some people are probably thinking, “That kid needs his butt spanked!” Gavin was mortified…Aiden was yelling at him and trying to kick the shopping cart into Gavin. So, I told Gavin to just start putting back all the items. This is where one of the “I NEVER” comes in. This happens to other people, not me, not my child, not us…not in public! See, this happens at home a few times a week, sometimes as often as once a day, but it’s at home.. Still challenging, and tiresome, but in our familiar zone. I’m not sure why he finally gave up, but he did. I think he still thought I was going to buy some of the stuff he had in the cart. He sulked in the checkout line, but there was no screaming or acting out…UNTIL we made it to the car and he realized I hadn’t bought what he wanted. So, it begins again, but this time he’s slapping Gavin and yelling at him in the back seat. Gavin moves to the front. And Aiden refuses to put his seat belt on so we can leave. Another ten minutes we sit in the parking lot. Remember, I had promised the boys smoothies. Aiden did not deserve a smoothie in any way, shape, or form. But, I needed leverage, or something to bribe him with. PLUS, I knew if I pulled up to McDonalds to order Gavin one and not Aiden, that we would be back in the same boat AGAIN! We’re in New Bern, and hour from home, I just want to go home…Another “I NEVER”…Reluctantly, I reminded him of the mango smoothie, and told him he could have fries, too. Seat belt buckled, quiet car, we’re making progress! After I order his food he sweetly says, “Dank You Mommy”. A few minutes down the road, with tear filled eyes and a quivering chin, he says, “Please forgive me mommy”. He says it several more times to Gavin and me both on the ride home, and that he’s sorry, and that he loves us. I’m worn out from the ordeal, but all is well, and I just want to hug him and not let go.
This is so very difficult to deal with. So many factors are involved and we have a twelve year old who is watching how we handle his little brother, and wonders why sometimes things just aren’t fair…We’ve done weighted blankets, essential oils, sleep, spanking, time out, bribery, taking away toys, restraining him. He definitely has a conscience, and feels remorse when he does wrong. He is lacking in the self control to not repeat those same behaviors, even though he knows the outcome. So, we have begun the trial and error process of finding the right medication to help control those outbursts, yet the right medicine to not take anything away from his precious personality! We covet your prayers during this process. Specifically that Aiden would begin to learn to have self control when things don’t go his way. And that Lee and I would use Godly wisdom in making decisions as far as discipline, and medication for Aiden. Lee and I have begun to pray about this together. I believe that change will come when we humble ourselves, call on HIM, admit our complete dependency on God to get us through. A few times during those meltdowns I have prayed aloud while its happening. It seems strange at first, and actually makes Aiden madder! But praying in Jesus’ name, and through His power for the tantrum to stop, for Aiden to calm down, and for me to handle things accordingly, brings a measure of peace to me, which Aiden is able to pick up on.
Every time Aiden remorsefully asks me to forgive him I am reminded of the forgiveness that I have been given through Jesus’ death on the cross. He didn’t just forgive my past sins…but my present and future sins as well, and I certainly don’t deserve it…BUT He does it anyway, not because of anything I’ve done but because of who HE is and how HE loves. HE even loves us, and our children far more than we can even imagine! Aiden lacks self control, but so do I, in many areas, and without fail, God is using Aiden to teach me..to teach me to be more humble, more forgiving, more understanding, to be stronger, to reach out and depend on HIM more.
John 15:16 The Father will give you whatever you ask in Jesus name.
1 Peter 5:7 Cast all your anxiety on him because He cares for you.
Zephaniah 3:17 The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by His love; he will exult over you with loud singing.