Back To School-My Do's & Dont's

It's that time of year already. Back to school for my kids in one week. I am still not sure how I am going to have them both out the door on time. We have to start our new routine soon!!

The first day of school brings so many emotions. Some of us will be cheering. Some will be crying. Some will welcome the routine with open arms.

I feel like I've been doing this for a while now. And I have 2 kids with special needs in the classroom. One more severe than the other, but still. Both have needs outside the norm. David has an IEP in place & Kyle has a 504 plan in place. David's was handed to him when he entered the school system. Kyle's had to be worked at a little bit.

I've compiled a list of a few do's & don'ts that might be helpful for the school year. Solely based on my personal experiences.

1. Don't be a butthole. Sounds pretty self-explanatory right? You've heard the phrase "You catch more flies with honey than with vinegar"? You can use that here. Do be respectful to teachers and other employees at the school. Set the example for your child.

David in 2011

• Kyle-Kindergarten 2011

 

2. Don't hover. This is exceptionally hard for me! Do let your child's teacher know that if you have availability to volunteer, you're her parent. This might not always be in the classroom. Maybe the office or the library needs some help.

 

 

 

 David in 2012

 

 

Kyle-1st Grade 2012

 

 

3. Don't complain about homework. If you complain, your child isn't going to want to do it either. Homework is a part of life. Even as an adult. Do help your child. If he or she is having a hard time keeping up with their workload, talk to their teacher to see if they have any ideas to help you at home.

 

 

 

David in 2013

 



 

Kyle-2nd Grade 2013

 

 

4. Don't complain about your child's teacher. There are some more than others that I'd like Kyle to have. David only has one choice (and luckily each school has had an awesome choice). If you complain in front of your children, that particular teacher is going to lose any respect and authority because your child takes their cue from you.

 

 

 

David in 2014

 

Kyle-3rd Grade 2014

 

 

5. Don't be confrontational. This sort of goes with numero uno I guess. But it can stand to be repeated. Teachers did not go into their field for the great money. They do it because they felt it was their purpose. They will make mistakes with your children just like YOU do. My "do" for this is to approach them calmly and respectfully. Address the problem at hand with them in the same manner you would like to be addressed when there is a problem at your workplace. They work hard and your child is not their only problem. They have 20 others all with issues of their own. So respect and remember that. I have never had a teacher not be willing to talk with me via email or phone when either of them were having problems. Be kind to them.

 

 

 

David in 2015

 

Kyle-4th Grade 2015

 

 

 

 

And just a couple from a parent's perspective.

 

 

Teachers,

Please know that I respect what you do every day. Also please know that I know what my children's flaws are. I also know that it is your job to point those out to me. And while I know what they are, it is always hard to hear it from someone else.

 

Please understand that as a mother it takes a ton of trust on my part to hand my child over to you for 7 hours out of the day. Some days it rips my heart out if they left my home in a particularly bad mood to send them to you that way. I know it's part of life, but they belong to me and it feels strange to send them to someone I don't know very well.

 

And while I always try to send an email if things at home aren't as they should be, sometimes time does not allow me to let you know right away. If you see my children are off at school, know that we have a lot going on here and some days are worse than others. Don't hesitate to contact me if you notice something is not as it should be. My kids in particular have issues with communication. While one of them is working on that, he still won't tell you what's wrong right away. He will shut down first. I am counting on you to help him cope if he has to be at school while things are awry at home.

 

 

My last thought is that we should all appreciate and respect each other as parents and teachers. It should go both ways. I think that what will help make a successful school year!

 

 











A Decade

As of May 9th, I have been the proud (most of the time) owner of my youngest child. And let's face it. As parents we completely own these children and are responsible for turning them into caring, hard-working adults.

Throughout my pregnancy I prayed for a 'typical' child. We didn't know if we would have that prayer answered. I think you could say that we did though in the sense that he doesn't have disabilities like David has. But what we got was so much more than 'typical'. I'll take a word out of Kyle's favorite list of vocab here and say he's pretty epic.

 

 Kyle entered this world after hours of me pushing and no results. It ended with me having a caesarian section on an urgent basis. He came out crying. 7 pounds 3 ounces of a beautiful baby boy.


That first year was trying for us. He ate well and he slept through the night at 6 weeks. But he cried ALL the time when he was awake. Some people thought he had colic. I could tell this was a personality driven cry. The first year is a little blurry to this mom to be honest. I know there were great moments, but the crying overshadowed a lot of them.

But then the clouds parted and the sun started to shine. Because when he turned 1, he was a brand new kid. Independence was the name of the game for him.

He got himself into some precarious positions in the house. He required an eye on him at all times. If he was quiet, it was trouble. He was curious about the world around him. He even escaped the house around 1 1/2, but didn't get too far. And Webster stayed by his side the entire time.


Age two. His love of outdoors came. It was where I could snap the best pictures of him. Because he was in his element being outdoors. He would have lived outside if he could. He also had his first of several ring bearer gigs and learned to rock a tux.

 

 

 

Three year old Kyle was my favorite age. The things that came out of his mouth both shocked and humored me. He met his best friend when he was 3. And they are still best friends, despite being in different states. Preschool started at age 3. He gave us joy in a year that was quite challenging with David. I am forever grateful for that.

 

 

At four....he became too smart for his own good. I couldn't fault his ability to be able to tell when I was possibly telling a little fib in order to get him in the house or get him to eat or to clean his room. He became quite insightful. We spent a lot of time together since he no longer qualified for the preschool program here. He was my constant.

 

 

Five. Started school, made new friends. Had a hard time completing tasks at school. At home, he was fine. He was doing things that he enjoyed here, and while he was slow getting ready, I didn't grasp what that meant for him at school yet. He enjoyed kindergarten and showed us that he was a bright kid with a love for books by the end of the year. And had his other 2 ring bearer gigs this year.

 

 

 

 

At six he started first grade. And his love of reading really took off as he read books all the time independently now. We still struggled with focus and attention though while doing things that didn't come easily to him. We started trying other methods to reward him for staying on task. And they worked. For a little while. Then the methods stalled. But he continued to show me his strong personality and true heart. Looking back at pictures, I can see this is the year where he took more of an interest in David and started to become his protector. He adored him and David adored any attention he threw his way.

 

Second grade and age 7 brought us his diagnosis of ADD. We started medication for him after trying so many other options that didn't work time after time. The difference in him was amazing. He could really shine in his abilities of reading and spelling at school and it helped him with his weakness in math. I feel this year he found a little self-confidence that had been missing.

 

 

The kid he became at age 8 was just a better version of the Kyle from the previous year. He fully embraced his brother and our family. It became apparent to him this year that we are a little different from other families. Most of the time he was ok with that. Other times, he struggled. But his heart grew a lot this year.

 

 

 

 

This past year has been so good for him. I feel like he has learned so much being 9. He is still working on becoming confident in his own skin and navigating a new school and a group of friends that changes. He's friendly to everyone and I'm proud of him for that. He has to learn a little more about give and take with his friends and family, but we're working on that. His love of books is at an all time high and he reads everything. Except for the Captain Underpants books. He has it in his head that he won't like those. Haha. But he is taking everything around him in and absorbing the world as much as he can. He went to camp for the first time last summer and is going back again this summer. He is continuing to grow as an individual and a member of this family. I hope his love of running grows and makes him want to push for his goals. I hope his love of tigers and all other animals pushes him to be compassionate towards all living things and maybe one day he can have a career in the field of animals.

 

 

 

 

Happy 10th Birthday Kyle Matthew. You are epic. Continue to become more epic at 10 than you were at any other age, but enjoy the journey. Your life will be what you make of it and I know you will make it great.

 

 

 

 

 

 













An Interview With Kyle

While scrolling on Facebook earlier today, I came across an excellent article (http://forwardinchrist.net/respond-to-special-needs/)  on how to approach an family with a disabled child. It gave some great tips on how to respond to your children's questions about other children with disabilities. At the end of the article, the mom asked their typical developing daughter some questions about her feelings regarding people approaching her brother with a disability.

I thought that was a fantastic idea. So I grabbed Kyle from his tablet (it's totally been a Minecraft kind of day around here) and asked him the same questions.

Disclaimer: While these are Kyle's exact answers, it did take some prodding on my part to get more details from him. He prefers yes or no kind of questions. But once he got going, he did so awesome :)


Q: What do you like to do with David?

Kyle: Play with him with his hats. I like to do that because it makes us both laugh.

Q; When someone meets David for the first time, what kinds of questions do they ask?

Kyle: Why is he in a wheelchair? Can he talk? Can he see? What does he like? What's that thing on his stomach?

Q: How do you answer when people ask those questions?

Kyle: He has to get fed through a feeding tube or he might choke. His brain doesn't work exactly like ours. It sends different signals to his body than mine does.

Q: How does it make you feel when people stare at David?

Kyle: It makes me feel weird. I don't like it when they stare.

Q: What would you like to say when that happens?

Kyle: Even though he's not normal, you shouldn't stare at him. If you have a question you should ask me, or my mom or dad.


And then some extra insight that came at the end of the questions. At this point, he was laying it all out there ;)

Kyle: "I'm fine with David being disabled. He's still fun even though he is mentally like a baby, but really 16. He likes to play with his favorite toys, like I play with mine. He gets mad and sad. Just like me."

There are a few other kids I'd love to ask these same questions to. My sister's oldest son (14) & youngest daughter (4) both have pretty close relationships with David. I'd also like to ask my niece on Michael's side (almost 11). She has a great relationship with him as well. Just to get their perspectives at their ages right now.

David. 16. Holy cow.

My head has been spinning trying to think of things I haven't already said about David as his body ages & his mind stays the same. I keep thinking there's nothing left to be said. Is there anything left that I can say that can express how special he is to me? Us?

Yes.

This is a milestone birthday. Sixteen. Driver's license, car buying, being added to insurance. In my head he is supposed to be doing all of that. But he's not. And that makes me sad.

But then my heart speaks to me. He's NOT supposed to be doing any of that. That is NOT who he is. He's David. Special needs child extraordinaire. He's the puzzle to so many. Unable to be figured out.

I often wish he can speak to me. To tell me his thoughts. Tell me his feelings. Then I realize he does speak to me. He speaks to me when he smiles. Which tells me he is happy & content. He speaks to me when he cries. Which tells me he's sad. He speaks to me through agitation. Which tells me he's angry & upset. I don't always have the answers as to why he's feeling these things. Or how to fix the hurt & sadness. But he is communicating in his own way.

And while he may not be getting his drivers license or buying a car, I know deep down that wasn't supposed to happen for him. For us. He has a deeper meaning than the materialistic things in life. Although we did get him a license plate for his wheels :)

He made me who I was meant to be. Someone I didn't know I wanted to be. His heart is woven so deeply into mine, his soul entwined with mine. For that I am forever grateful. He makes me better. On the good days, the bad days, and the in between days. I am absolutely sure that God hand-picked him for this family. He is forever ours & we couldn't be any luckier.

Perfectly Imperfect

Today I just feel....blah. A little tired. A little lazy. I don't feel like doing much. Just blah. A very technical term. There's no reason really. Except probably a lack of sleep combined with a busy week.

Sometimes I try to put on a show and act like everything is great. I paste that smile on my face and pretend that blah isn't how I'm feeling. But let's be real. We all have days like these.

And I thought I would say that it's OK to feel this way. And ok to be imperfect. I love to show my perfect moments on social media. I love sharing the kids' smiles, their bond with each other, and their accomplishments. But we have real moments as well. I'm talking REAL.

For all of the awesome pictures I post of the kids that seem picture perfect, I get about 25 of these before I get the one that I actually use. In fact, I'm pretty sure I didn't get one good one out of this round of tries that I deemed social media worthy. David is super hard to get his attention (he can't hear, so if you could see me on the other side of the camera, you'd probably laugh at what I do to catch his eye), Kyle has one of the most unnatural smiles that you've ever seen. Unless he's genuinely laughing or thinking of something funny, you get the "smile for the camera, even if you don't want to" grin. And the falling over that takes place. I mean, some days I just can't even handle it all.

 

 

 

And then there's this. Kyle is not the affectionate type. He's not the smooching type. He will occasionally humor me. But this day wasn't one of those times. He hugs me every night before bed, and tells us he loves us every night as well. But if it were going to be caught on camera, he probably wouldn't. It would indeed be bad for his image. Whatever image it is that he's trying to achieve. 

 

 

And what can I say about this face??? It's pretty self-explanatory. This is from about a week ago. I probably took it to send to Michael at work. To say "See what you're missing out on today??" This is frequent in our house. The inconsolable crying. The days on end of bad moods. Sure. I love to share his smiles. But it's rare that I would share this. But I'm just trying to keep it real for you. Tonight I could probably take an identical picture. He is currently in his bed (he was self-injuring on the floor in his room, so for safety reasons, I contain him in a space that he's less likely to be hurt by something other than himself) crying. I think he's often just over the entire week by Fridays. He did have a good week at school, with the exception of a few times here or there.

 

 

So there you have it. Our blahs. While David is feeling sad in his room, Kyle is nursing a cold and watching Dukes of Hazard in his room. He will probably watch too much TV tonight because tonight is just one of those nights.

 

 

And I think it's really all ok. We all have those moments. Perfectly imperfect. That's us. And probably most of you too.

 



Choices

New year. New resolutions. Lots of the same that I frequently have. Eat better. Be more organized. Exercise more. Clean more. Sit on the couch less.


Typical resolutions.

I asked Kyle if he had any resolutions. I've never asked him before. This year he understands what it means to make a resolution. He responded with "To be kinder, that's all." I was pleased with that. I think I will add that to my list as well. I also know Kyle wants to run a 10K in the spring. Maybe that's not really a resolution, but more of a 'bucket list' item for Kyle. He wants to run a 10K because he's turning 10 this year. Thank goodness I don't feel the need to run a 38K because of the age I will be this year.

For me, 2016 brings some serious things that actually have made me feeling a little sad. David turns 16 next month. For me, this is a milestone birthday. He should be getting his driver's license. He's not. I still grieve for the David I dreamed of while pregnant with him.

Kyle turns 10 in May. Again, it's sort of a milestone for him. Double digits. He's going to be grown-up and leaving me. Maybe not for a long time yet, but it seems like he was just six years old. Even 6 months old. I'm sad for me.

So instead of feeling melancholy about the changes approaching. I choose to feel joy.


Joy for the fact that I can love David for who he is. He is on this earth to make my heart happy when he is happy. He makes my heart sad when he is sad. But there is joy in that fact as well. Just joy that he makes me FEEL so much. He had a really bad morning today & is having a rough time this afternoon due to not feeling well, but had a great day at school, so I find joy in that. And I am grateful knowing we have capable doctors to take care of him if we need to go that route tomorrow.

 

Joy for Kyle. Becoming a tween. Joy in the fact that he is growing and changing and providing me with the opportunity to watch one of my children meeting milestones of a typical child. And joy in the fact that one day he will, in fact, be an adult who won't need me as much as he once did. And maybe, just maybe, I will have joy one day knowing that he knows that no matter how old he is, he will always need Michael & I.

We will always be faced with sorrow and sadness. The world is full of it. But let's try to find the joy within the sadness. It is then that we will be able to appreciate the people and places around us.

From my family to yours, I hope you all have a happy and blessed 2016.

Presents and Presence

 

Christmas is almost here. My gifts are all bought and wrapped. I am truly blessed to be able to give to my kids. I start my Christmas shopping almost right after Easter to allow myself to spread the expenses  throughout the next 9 months. David and Kyle don't lack for presents under the tree.

And while I am thrilled that we work so hard to provide the kids with not only their needs, but a lot of wants at this time of year, what I am really going to work on now is being present WITH them. David's last day of school is tomorrow and Kyle's is Friday. Time to work on my presence.

Presents and Presence. Two words. Pronounced the same. But oh so different. I've got the presents thing down pat. Almost too well. And I feel like I'm teaching the kids about being a little bit spoiled. My goal for this break is to try my best to teach Kyle about giving back. I hope I can show Michael, Kyle, and David how we should be living to give more. Not living to receive.  

Let's start with Kyle.

I can easily say that he lacks for very little in the material sense. He has many of the toys he wants, lots of the video games he desires, and dresses in brands of clothes he likes.

He can be a giver. But he can also be a taker. We adopted a child his age for the Christmas season to buy gifts for and I got him involved with that. He enjoyed it and I hope he understands that so many kids do not have the kind of Christmas he & his brother have.

My goal for he & I over Christmas break is to spend time together. He can spend a lot of time in front of a video game, closed off in his bedroom on non-school days. (It is something that rarely happens on a school night.) And I often allow it to happen. He loves playing board games and showing me his magic. I am going to try to be a little less busy at home and let him show me :) He is one of the best gifts I've ever been given. I want him to know that.

 

 

 

Then Michael.

 

We have different interests. We come from different family lives. We argue. We disagree.

 

But we make it work. Because I love him and he loves me. Married 18 years, and together 21 years. Somehow we've made it through the trials and tribulations. I couldn't do this without him.

 

But we're tired. We could definitely use some time to reflect and improve our relationship. Hopefully  we can maybe try to stay up more than 10 minutes after the kids go to bed to just watch a movie together or talk. Or clean together. Because that is every wife's real dream. Haha. (For real though!)

 

 

 

And then there's David. I saved him for last for a reason.

 

 

 

So many people don't understand him. They don't take the time to know how much he LOVES attention on the good days. Or the need he has for movement or deep pressure on the bad days.

 

Sometimes I forget. I forget that he needs me. He is actually SO easy going on the good days. He would just happily play in his room alone and be fine. But if I'm in there, or Kyle, or Michael, he lights up from the inside. I can't explain it. He has a deep & beautiful soul in there that can light my entire day. One goal of mine on his good days is to give him my time. More than just patting him on the head and paying a little attention. I want him to want my undivided attention. So I can give that to him.

 

On the bad days. The bad days are bad. I know most of you have heard me reference the dark days on facebook. He is so strong. He has hurt me. He has hurt Michael. And he has hurt Kyle. Those days are HARD. I am going to work on trying a little harder to ease his bad a little on those days. I know movement is a huge help a lot of the time. Maybe changing his scenery in the house will help. I am going to try SO hard to help him. And I have to be ok with it if I try and I fail on a specific day. Because I know in my heart that some days, it's better for him to try to work it out in whatever form of aggression that he is seeking that day.

 

 

 

 

 

This little family I have. We ALL need to work on our presence. We have it in us to be completely present with each other and with others. And I'm hoping by working on our presence, it will help us to appreciate the presents we receive and be thankful for the ones we are able to give this year. 

 

 

Merry Christmas from my family to yours.

 

 

 







 

This one is just an outtake. Kyle know by blowing on David, we have a better chance for a smile :)