Survived

January 20 2019

We survived another day. I think the increased dosage of cbd is helping. I guess the real test will be Tuesday when he goes back to school. πŸ€žπŸ»πŸ™πŸ»

Positive today….I got to take a nap. ❀️

I have an idea

Jan. 19 ’19

Today was a relatively good day! I was giving Kyle is morning meds and had an idea…increasing his cbd amount. So I did. And today was a good day! He even did great with my in-laws, sister in-law and her two kids!

James started researching cbd for autism years ago, and kept trying to convince me to try it. But I was scared. Probably more because I was uneducated on the subject. I asked his dr about it who gave the standard “not enough research for him to say yay or nay”. Until a year ago.

I don’t know if he was out of ideas or he had done his own research or what. But he recommended we try it out with Kyle. He gave us a specific brand called charlottes web. James knew all about it! It is used a lot in seizure patients. The dr explained that many times seizure medication is prescribed for autism patients. And he had a couple autism patients that have had success with this specific strain.

So we went home and ordered the extremely expensive ($300 a bottle) cbd oil. It was a learning curve figuring out the right dosage at first. And I wasn’t even sure if it was really working. Until we ran out and I noticed a HUGE difference in his anxiety. I even tested it out the next month and let it run out just to make sure the $300 a month was worth it. It was. It is!

We have been giving him the same dosage for awhile now….but I’m thinking it’s time to adjust. And see what happens. Today it worked. So maybe, just maybe, tweeking the dosage of the cbd with help with Kyle’s behaviors. 🀞🏻I’m gonna hold onto that as we approach day two of the 3 day weekend!

I swear sometimes I feel crazy for all the things I try to make life a little bit easier for Kyle AND me. Sometimes they work and sometimes they don’t. My favorite is when they work for a few days and then they don’t. Just kidding that’s not my favorite. It’s actually annoying.

Kyle….the ever complicated, always changing, never easy child that I can’t help but love more than anything. ❀️

Here’s to more of the better days like today and less of the crappy days like yesterday! πŸ™πŸ»

All the babies

This morning as Whitney was brushing her hair she said “mom, I’m gonna have a lot of babies when I’m a grown up!” My heart broke a little bit, thinking back to being a little girl and wanting all the babies. Before my dreams were shattered when fragile x entered my world.

Let me try to explain in layman’s terms, I have a 50% chance of passing my “bad x” onto my children. And if I pass that “bad x” my chances increase drastically in having a child with the full mutation (like Kyle) or a carrier of the gene. It’s all so complicated. And a lot to consider when deciding to expand a family.

Cody was tested when I found out about Kyle. He got my “good x” so he won’t ever have to worry about FX being passed to his children. πŸ™πŸ» I am so grateful.

Whitney. I haven’t had her tested yet. I know she doesn’t have the full mutation like her big brother. BUT, is she a carrier? Will she carry the burden I carry? Will she have to consider this when she gets married and discusses having babies with her husband? Will her hopes and dreams of wanting “a lot of babies”-6 to be exact- be crushed? Will she have a Kyle?

This morning as I watched her in the mirror brush her hair, completely oblivious to what was going on in my head, my eyes became wet. I thought of all those questions. Even though I know whatever happens she is brave and strong willed like her mama. So she will be fine. But my heart aches thinking about what her life may have in store for her.

I guess I have put off getting her tested because a part of me would rather live in wonder than live in guilt. Guilt in knowing I passed this on to her. Guilt in knowing I can’t take the burden from her. Guilt in knowing the fear she will feel when starting her family. 😒It’s easier just to wonder for now.

Ignorance IS bliss….for now. Eventually I will get her tested. Because along with family planning issues, being a carrier comes with a wealth of other issues, so it needs to happen.

But until then I am going to dream of my baby girl all grown up having 6 healthy babies and being the best mommy ever. ❀️

Trying to be positive Polly

January 18 2019

At least it wasn’t raining today? πŸ€·πŸ»β€β™€οΈ Trying to be more positive. didn’t lose my patience with Kyle this morning until the bus pulled up and he refused to put his shirt on after asking about 37x and telling him to not pull my hair (his new favorite thing-he better not make me bald) for 47th time. And he was a super punk. But I remained calm and pretended his defiant behavior didn’t bother me. Which, if you have ever tried doing this while your kid is being the worlds biggest jerk ever, you know is a skill that is tough to master. So I’m patting myself on the back.

He got on the bus. But it was no easy task. Poor James. I swear he has earned his spot in heaven.

Do you think he will ever be good at getting on the bus? Will he ever just get on without a fight? Sigh. Man I hope so. But it’s hard to even think he will ever get there. Especially when he has taken such a leap backwards. I guess I have to hold on to hope though. I have to.

All week Janine has said he’s had a really hard time transitioning from the classroom onto the bus to go home too. Which he had struggled with in the past but had gotten much better. Of course this week he has reverted back to sucking at getting on the bus to come home.

Today he showed up shirtless and Janine said “oh it was rough today” πŸ€¦πŸ»β€β™€οΈ sigh. Apparently he stripped down to his singlet and had to be carried onto the bus.

I know I said I was gonna be positive but how do I remain positive when so much negative is happening?! I don’t know. But I gotta keep trying. For my sanity.

My in-laws will be here tomorrow. I really hope and pray Kyle does ok. Because mentally, I’m not sure I can handle a really bad day with him! πŸ™πŸ»

Oh and my vacuum broke. See how can I be positive?! πŸ€¦πŸ»β€β™€οΈ I’ll try again tomorrow. Wish me luck!

Keep swimming

Jan 17, 2019 I started looking through Pinterest for inspiring quotes. Mostly to try and inspire myself. But then I posted the ones I liked best on Instagram. A few minutes later the texts and messages started pouring in asking if I’m ok.

Am I ok? I guess. I just feel like I’m semi drowning. And am emotionally exhausted from the day to day with Kyle. So I guess Im not really ok. πŸ€·πŸ»β€β™€οΈIm just trying to tell myself I’m ok so I keep swimming. Ya know, telling myself I’m ok until I believe it…or at least til I don’t feel like I’m drowning.

I had Fonda come again this morning. Thankfully. Because kyle woke up in a super defiant mood. Refused to keep his shoes on. He threw them at least 4x. Refused to go to the bathroom but kept telling me he had to go. Didn’t want his shirt on (surprise surprise). And screamed “no!” At me about 25x. So I knew it was gonna be a rough morning.

Fonda had to come in and walk Kyle out and onto the bus. She hasn’t had to do that ever. He usually gets on with just her standing outside. Thank goodness I had her come today. Cuz he got on the bus. πŸ™πŸ»

I made a playlist of inspiring songs Today too and I’m gonna play it all day tomorrow. And I’m gonna read through my quotes that I pinned, in the morning- and hopefully I can stop focusing on the negative and start seeing the positive. And slowly start to float again.

I think part of the problem is Kyle relies so heavily on my mood and my anxiety levels. Which adds so much to my leafy heavy load i carry-it’s a lot of freaking pressure! Most of the time i can pretend i have it all together to trick Kyle but right now it’s tough. I reached an end point. The 3 week break sucked my strength dry. Then I think, I can’t even be in a funk without Kyle having some say about it. 😏 Anyway…

I’m glad there is always tomorrow. I am glad that I can try again tomorrow to have a better ‘tude. I’m glad that I can always pray for more strength and He always gives me that little bit more I need. I’m glad that I know “this too shall pass”. And I’m so glad that I have a savior that I can cry to and know he understands this load I carry more than anyone else.

Here’s one more of my favorite Pinterest finds. I LOVE this. I am not a victim. And life IS unfair but I refuse to quit. ❀️

I’m here.

January sixteenth 2019

I got up today at 5:25…again. Not knowing how the whole bus thing would go…again. So I’m patting myself on the back.

I’m in a serious funk. And I’m trying really hard to dig my way out. I’m trying to look for the positive. Look for the lessons. Be grateful. But I’m still down here. Still feeling defeated. Still in a funk.

Kyle is such a complicated person. And I’m not sure if I will crack his code in this lifetime. And that’s so frustrating. Everyday I wake up with a heavy load to carry and anxiety filled to the brim. Because I don’t know what the day will bring. And it’s weighing on me more than usual.

This morning he barely got on the bus. But he got on. I should be grateful. I should focus on the fact that he got on and didn’t meltdown and need a redo. But it’s hard to be grateful. It’s hard to focus on that teeny tiny positive. Especially when i want (and think I deserve) a big positive. Like Kyle walking onto the bus and sitting in his seat more than one day in a row.

I hate feeling this low. I hate not being able to focus on the good.

This is just a season, right? Hopefully it will change soon. And I’ll be able to get some rest from the really hard. Or at least my perspective will be able to shift seasons, if Kyle won’t.

I guess today I am grateful that I showed up…again.

Sucks

January 15. ’19

This morning sucked. My positive vibes didn’t stick. πŸ˜”Kyle walked out to the bus shoeless and dropped to the ground immediately. He went into full meltdown mode right away. Like full on screaming crying. I’m sure he woke up some neighbors-he definitely woke up Whitney AND cody, who both came downstairs wondering what was wrong with Kyle.

Sue, the amazing bus driver, offered to go get a few other students and come back. A do over.

I know I ask this every other day…but seriously, why can’t he just get on the bus consistently. Why is this his issue? Why is getting on the bus every morning such a fight? Why is this how we have to start our morning more often than not?

Off drove the bus with Kyle’s back pack, shoes, iPad and Janine. But not Kyle. Kyle sat screaming on the sidewalk until james physically stood him on his feet. Kyle screamed and cried all the way into the house and onto the couch where he continued to cry for another 5 minutes.

It’s so hard for me not to be mad at him. It’s hard for me to give him a hug and softly tell him to calm down. But that’s what he needs when he gets this upset. It is so hard to do, when I really want to walk away and be mad.

I sat next to him and rubbed his hand and went through the whole “when the bus comes back you need to get on the bus nicely, walk up the steps. Keep your shoes on and your shirt on. Sit down in your seat” bit. Over and over. Whitney even took turns telling him. He finally relaxed. And we sat and waited for the bus to come back so we could try again.

The bus pulled up and Kyle walked out with Gooding by his side. He took his time and hesitated for a minute but walked on the bus and sat down. Thank goodness. He just needed a do over. Again.

Dangit. Why does he need so many do overs? Why can’t he just get it the first time. This isn’t something new!! As I type that out I can’t help but think of how many times I’ve needed do overs in my life. How many times God wonders the same thing about me? How many times I make the same mistake and need a do over. And I’m a potted as many do overs as I need. Like, every time I lose my patience with Kyle when he can’t get on the damn bus. And then I think-there goes Kyle again….teaching me. 🀨

My life with Kyle is so hard. Like really super hard. And it’s hard every day. Not just some days. And a lot of days it’s hard to pick out the lessons. Or the blessings. And even on the days I can see the blessings and/or the lesson it’s still hard. And it still sucks that every morning I wake up and have no clue if Kyle is gonna get on the bus or fight like hell not to get on the bus.

I don’t even know where I am going with this post. I guess what I am truly grateful for today is, a bus driver that is willing to give Kyle a do over on those mornings he fights like hell. And i can only pray she continues to allow for this. I could do without the lesson, or at least teach me in an easier manner, is what I plan on talking to God about tonight. I need a break.

Hoping (cuz I do a lot of that lately) tomorrow is a day he gets on the bus.