15 years later........

Well, big day here at our house. First, it's our 15th Anniversary, which wow, unbelievable- very proud of my husband and I and all that we've done these past 15 years- especially with our family. Because to say life is hard, well, we've created a new definition. But we still smile, we still laugh, we still tease, we try to keep our foundation that brought us together in the first place. (Which is funny because when you have a child with Autism, the whole teasing, being silly, a lot of sarcasm thing is not understood, and taken usually very badly- or he'll try and it's all inappropriate)- but that's what we do- that's been one hard aspect of "us" to hold our tongue on. as they say if we're not laughing, we might be crying- so I prefer to laugh- sarcasm keeps our world sunny... but we certainly do a lot behind closed walls, lots of laughing lots of goofiness. So, Happy Anniversary to my love! Second big thing of the day- I had to register my oldest for Jr. High. We walked her schedule, we figured out the locker (that wasn't easy for me, let alone my daughter), and just trying to figure out this whole strange time of life- as they call it now- TWEEN! I know she'll do fine- but wow I have a kid in Jr. High. How did that happen? And Jr. High isn't easy, well really for anyone- but then there's our family. And our home life, and the struggles that she has to "put up with" which I know isn't fair. Of course it's not fair. It's not fair for Ty, it's not fair for her, it's not fair for Sarah. But I"ll tell you one thing- we continue to tell our children "LIFE ISN'T FAIR".... But I know she will become a more compassionate, kind spirited person that has so much to contribute to this world because of it. Or she'll hate us forever and spend her life in therapy- but you know either way.. we did the best we could at that time. Isn't that what parenting is about anyway- no matter what circumstances you are given. No one ever knows what will become of their life when they have children, no one "plans" on your child having any special needs, any medical issues, things just happen. And as our vows were "in sickness and in health"- it really is that... and if you're not ready for that, then well, don't get married, don't have children, don't breathe air. Because no one really knows what the future holds. And whether it was myself, my husband, or any of our children- this is our commitment- to love them, take care of them no matter what, and to help them become independent individuals. That's our commitment- and no one said what the path would look like. No one said it was going to be easy. And in reality nothing would have prepared us for the life we lead right now- all we can do is show our children that we love each other, that we love them, and that we are going to make mistakes, but that's okay. This is especially important for our children that have "perfection" syndrome as I call it... that things "have to be this way and it has to be perfect"..... I don't know how many times I have to tell them- no such thing... I know it's just sort of in their brains, but with continued coaching and example- hopefully they will get that nothing is perfect, everyone makes mistakes, it's what you do with that information to help from repeating the mistake. But trust me, I still repeat mistakes, especially when I'm having 'A DAY'... because sometimes, it's just hard. There isn't a day that I/we don't deal with conflict, excessive behaviors of some kind, chaos. It's hard- day after day after day. In fact you don't even remember what it's like to not deal with that. That's our normal. But it is draining, it's exhausting, it's tiring, it's sad, it's hard, it's nothing I"m good at- dealing with conflict. Heck I am the type that avoids conflict at all costs... I really don't know how to deal with it in a constructive way. I've had to learn and learn very quickly- and how to apply it to a child who struggles so much from both psychological and neurological issues- and I crack sometimes. But that's where for the most part- my husband and I are a good TEAM! He brings me back to my feet, and I do the same for him. It's hard to always everyday hold yourself together as a mom, wife, woman, human being- when pretty much every waking minute is consumed by my kids- which can be wonderful at times. It's the excess behaviors, the not full understanding when he'll blow up, the constant need to make sure our household is in check and not overwhelming to his system or he will blow. And when he blows- it's not like when he was 2 and 3- the cost is now too high. Property destruction, self injurious behaviors, injury towards others. This can be the face of autism. Not for all kids, but for many families- and it's hard. Especially as our child is getting bigger, stronger, older. We feel even more pressure to 'HELP' him because soon he'll be an adult. An adult who will possibly still lack coping skills when frustrated, still lack effective communication skills to help others understand what he WANTS/ NEEDS. Be able to control his anger and outbursts. An adult who will need to take care of his bowel irrigation procedure on his own, take his medicines, be responsible for his own body, and be responsible in this world. These are my worries. But today, right now, he has spent the last 30 minutes wrapping special things in towels for myself and my husband. He was writing me a poem. He wanted to "spend his money to buy us our Anniversary dinner". These are the special moments that melt my heart and I simply let myself just enjoy the moment. And not let my worries take over. He's here, right now, being incredibly sweet, engaging, and calm. He's trying so hard and I know it- this is the boy I know who wants to come out a lot more then is able to. And I even more appreciate how hard it is for him every single minute of every single day. People always ask me, how I'm doing? And although I appreciate the kindness, very few ever ask how Ty is doing. I know from the outside we live a life that to most would essentially be impossible. But my husband and I, we are committed. We are committed to each other. Committed to our family. Committed to our daughters. And committed to Ty. Many many years ago we promised him that we would never give up on him. So many have, so many have wanted us to. You just can't believe some of the things we have heard over the years. But Brian and I no matter what- are survivors, we are strong, we don't give up. And our children know this. We will continue to fight for what our son NEEDS, fight to give him a good quality life- and that may not look like something that we currently know. But the life we are giving him right now, well, he's certainly happier. He smiles more, he's less volatile, less angry, less mad. Very simple things will set him off, but it isn't his every day demeanor. He wants us to be proud of him, he wants to please us, he wants to be happy. But for him, there are just so many things that get in his way and he doesn't yet have the skills or tools or language to properly deal with it. But that's why we'll never give up on him. We love all of our children and we try to provide them with the security of knowing our family is strong and there will be good times, there will be bad times, there will be struggles, there will be laughter, there will be tears,there will be unconditional love and support. Okay, so got a little side tracked, but my thoughts are flowing right now. Jr. high, anniversary, Ty writing me poems, a very emotional day for me. And to get to my third event today, was also registering my little one for first grade. This is my view of first grade. Kindergarten is pretty much like preschool- a few hours in the morning. Not a big transition. But first grade, well this is a big year- plus it's my baby. My youngest- she'll be at school all day now. She's the kind of kid who you really don't mind having around most of the time. She's just so happy, kind, and always wanting to help others. She truly has a beautiful kind spirit that makes everyone smile who meets her. And I'll miss her. It's the big jump that she's gone more then she's home. But I'm also very proud of her and I know how excited she is. Which is wonderful- she can't wait to eat lunch with her friends, have more recess time with her friends, and to continue learning so many new things. She has this kind of spirit- and it will give Ty and I and his behaviorist more time to work on his skill deficits, his coping skills, to bond, to grow, to learn together and to see him smile. He isn't able to attend school- we've tried, and tried and tried.... and luckily now with all the right supports in place, he's growing, making progress, but like I"ve mentioned before- the external world creates too much chaos for him, overwhelms him so much that he simply lives in fight or flight, he can't cope, he can't even co-regulate. It's the hardest thing to ever see in your child. They are just like a skeleton - no emotion, no joy, physically never present and somewhat lifeless. But we know he has this most beautiful spirit that wants to come out, wants to be present, wants to please, wants to be part of our family, wants to learn, wants to teach, wants to play, wants to enjoy the day. So really it's not so hard to "stay in our bubble" when we see this child come out- our goal is to continue to keep him out, keep his spirit open, see him grow and develop like children should. Is he unique- absolutely, aren't all children. When we signed up to be parents, we didn't sign a clause saying only healthy children without any life struggles, disablities, no medical illnesses. No, we signed up to love our children no matter what. To provide them with what they NEED to grow, develop, love, learn and be happy. And this is what our son needs in order for that to occur. Really, what parent wouldn't do what we are doing to help there child? And so 15 years later, we continue this journey- albeit rocky and bumpy at times with lots of struggles and chaos. But also with love, support and laughter we march on!