Cha-Cha-Cha-Cha Changing

Hey ya'll! If you stop by to visit you may see some changes going on. Since we are still new to this whole blogging thing, we are finding our way to the perfect layout and look. We hopefully will not take long to get everything fixed for you guys and are going to do our best to make your reading experience easier and more enjoyable. Love ya'll and hope to have a new post up soon! 

I Broke A Rule

 At the beginning of this journey  we put down some ground rules for ourselves. Some rules were suggestions from professionals that we'd seen, others were our own. They were along the lines of  "Feel what you're feeling then be done with it and move on, Never pity yourself or Big for the life that we have, Find joy in the little things everyday, Celebrate, Celebrate, Celebrate".

 We make most of them up as we go and usually don't really acknowledge them out loud. It's just something that's understood amongst us. But the one rule/guideline whatever you want to call it that we did discuss out loud on several occasions, I broke. Not only did I break it but Daddy Trouble did too in the same week, which is really rare.

 "Don't look too far into the future. Plan for the next week, month tops, but do not look years ahead. You will lose focus and drive."

These are the words that were spoken to us on the day of Big's diagnosis. We've held to that almost religiously for the most part until recently.

If you've ever seen the series "DarkNet" you'll know where the sudden desire to look forward came from. Daddy Trouble and I sat and watched parents tell about their adult children with Autism, some of which were still living at home or deciding to move out on their own at the age of 30, others were finding jobs through employers reaching out to the special needs community. These high functioning teens and adults with Apserger's and Autism were flourishing in a job culture where technology and the internet enabled them to be social and successful.

 My husband said "I never thought about whether he would live with us when he's older or whether or not he would go to college." I of course could distance myself enough for the moment to tell him that we shouldn't be worried about something that far ahead. "So many things could change between now and then." I told him.

The next few days while looking at house plans, I thought about what he'd said and the segment we'd watched. I saw a plan with an apartment over a garage and thought "We could do something like that for Big." and it kind of snowballed from there. I thought about the possibility that Big's progress could slow to a crawl. He could suddenly just stop building his vocabulary. His emotional coping skills might never improve. He may never be able to keep his balance on a regular playground swing. His little brother may have to take on a much bigger role in his life than we planned. As an advocate or caregiver.

All of these things are small possibilities and likely Big will continue to improve and may one day become a self-reliant, independent young adult who can drive a car, live on his own, build friendships and relationships but the tiny ball of doubt kept me worried.  I am a Mama after all.

I voiced the same worries that his Daddy had voiced to me and he gave me the same encouragement that I had given him almost  word for word.

I feel selfish. I know others in our community who know exactly what their children won't be able to do. They know that they won't be planning a wedding or teaching them to drive. They know that they will have to make plans for their child when they aren't able to care for them anymore.

None of these things are guarantees for us and that makes me feel kind of crappy for feeling down about what our life, what Big's life may hold.

I continued to break our rule for a few extra days. I dwelt on the things we needed to plan for whether they would come to fruition or not. I thought about that garage apartment. I thought about having more children so that Little wouldn't have to care for his brother all on his own. I thought and thought and thought and I realized not once had I prayed for peace. Not once did I stop myself and let go and let God. One of the hardest things for me to do in my walk is let go of things.

 I have a bit of an ego, I will admit that over and over again to whoever needs to hear it, and sometimes I just can't get my head around the fact that someone else might be better at handling things than me. Even God. Sometimes , especially God because I don't want to know that my plans don't line up with His. I don't want to know that His path might be harder even though the end result might be better.

 After a few days I felt the stress and the panic of all of the things I hadn't thought about yet set in. That's when the light clicked on in my thick skull. I was looking ahead. Way way ahead into an unknown abyss that worries parents of neurotypical kids and special needs alike. My child is 3, nearly 4 and I was trying to imagine what apartment layout would work best for a young adult man on the spectrum? Really Mama?! That's a stretch even for me.

I laughed out loud at myself. I had to. There's nothing else to do sometimes but laugh at yourself and take a good hard look at the fear you've created and then let it all go.  That's exactly what I had to do. I breathed in the good energy and exhaled the bad. I let the Spirit fill me with the peace that it had been waiting at the door of my heart with for days.

I looked at my wild haired little boy and let myself see the little boy. For the first time in days I sat and looked in his big blue eyes and saw super heroes and lightsabers and pretend Zombies. I saw my right now and not my future. I looked and saw my youngest being a little brother and not a caregiver, not an advocate. I looked and saw that they weren't bigger or taller than me just yet and that I could still pick them up and hold them like the babies they are.  I saw what was there before I broke the rules.

I'll do it again. I know I will because I'm an imperfect human,I'm a Mama and I'm a control freak. Next time I hope it doesn't last so long. Next time I want to laugh sooner. Next time I want it to be minutes, hours tops that I miss because of worry instead of days. Because this life, the life we're living right now is the best life. Better than I can plan, better than I could hope for.

Live right now and let the rest go.

Friday or Frat Party

 We are going to play a little game today. It’s called “Friday or Frat Party?”. You guys have to guess whether these are 15 things that I say as a Mom to my kids on a random Friday or as the sober host at a Frat Party.

Ready?

• ·       No more to drink for you. Why? Because last time you had that much, you wet the bed!
• ·        TOILET! TOILET! TOILET! GET IT IN THE TOILET! FAST!FAST!FAST!!!!
• ·        It’s 3:30 in the morning! We’re done! Go to SLEEP!
• ·        Where are your pants?!
• ·        There is no reason you need to put that many chips in your mouth at one time!
• ·        Give me my keys back! Don’t you run from me!
• ·        For crying out loud turn it down!!!!
• ·        Babe, he passed out on the couch again. Yeah, I need you to move him because he’s too heavy for me.
• ·        There is marker everywhere!!! WHO DID THIS?!
• ·        Whaaaaaat is that smell???
• ·        So help me if this stain doesn’t come out…….
• ·        No, I don’t want to hear that song again. I might actually lose my mind if we play that song again.
• ·        We can’t go outside because it’s freezing and we still have’t found your pants!
• ·        Are you okay? Are you bleeding?! No?. Okay, yeah, no, I know. It hurt, but you’re good.
• ·        Get in the car. No, the other side...because he’s sitting there that’s why. No you can’t drive. JUST GET IN THE CAR! 

)   I'm going to be honest here guys. These are all things that I have said to my children as recently as today. Also, I've never been to a Frat Party....I just kind of went by what I see in the movies. Sorry for the deceit. 

My Husband Tells Me I'm Beautiful and I Believe Him

I'm very blessed. Let me just start with that.

     I have a hard working, fun loving, Christ-like  husband who tells me that he loves me and that I'm beautiful every single day and I believe him.

 But I didn't always.

     When we first started dating and early in our marriage, heck , even up to just a couple of years ago I would often brush off his compliments or more often even, I would have a rebuttal for them. To give an example, here is how a conversation would go (and sometimes still does if I'm not careful.) between us.

Husband: You look beautiful today, Love. (Love is one of the only acceptable pet names for me. I hate pet names.)

Me: Yeah right. Do you see this hair? Worked on it for 15 minutes and it still looks like a greasy bundle of straw.

Husband: ……. so what's for dinner?

        Over the course of our relationship I have suffered from a severe chronic illness, a miscarriage, 2 full term pregnancies, breastfeeding 2 children for a minimum of 9 months each , and my oldest child being diagnosed with first  food allergies, then asthma, and finally ASD all within the first 2 years of his life.

    My weight and generally my self-esteem  have fluctuated with each and every one of these events and my Cuddle bear of a husband has been there every step of the way telling me how beautiful I was, am, and will continue to be to him.

      Even when I was covered in blood, sweat, tears or unmentionable horrors coming out of our children. Even before, during and after giving birth. Even the numerous times I've been incredibly sick. Even when I didn't act or feel beautiful he would tell me 

                      "You are so beautiful. How did I get so blessed?"

I can't tell you how many times I've told  him he was full of you know what.

                                And one day I was convicted about it.

        I realized that my husband deserved better than that from me. He deserved better than a wife who doubts him when he says something that he feels is true, even if I may feel differently at times.

    I am not beautiful to everyone. I never have been and never will be. Everyone has their own preferences and definitions of what beautiful is and it's impossible for every person in the world to fit every other persons idea of beautiful and I'm okay with that because I'm beautiful to my husband and that's enough for me.

       I realized  that if it wasn't good enough for me that I was beautiful to my own husband then it would never be good enough.

    He is the person God gave me that I'm able to share my heart and soul with. He wants what I want and cares for me more than all others in this life. I value his opinion above anyone else in this whole entire world and yet I doubt him when he tells  me he sees me as beautiful? How does that work? I'll tell you, it doesn't.

       I don't doubt him when he tells me that he loves me or that I'm the best Mom for our boys, so it wouldn't make sense for me to doubt him about this either.

       So I made a shift in my thinking. I made a conscious effort to say "Thank you" instead of telling him he's full of it. I try harder to compliment him in return.

      I fail miserably but I'm making an effort that I've never made before and it's gonna take time to change a deeply embedded habit but I will continue to work towards being the Christ centered woman that he deserves as his wife.

Thank you Lord for this precious man of mine and help me continue to believe him when he tells me I'm beautiful.

8 Things We want the people we love to know about being an Autism, Asthma, Food Allergy all-in-one Parent

We're back! Finally! We took a little break over the holidays but hopefully our posts will get a little more regular now. Here is our first post of the year. Hope you guys enjoy.

1.  We like getting invites. Parties, get-together's, baby showers, cook-outs. But, unfortunately more times than not the answer will be "No." from us. PLEASE do not stop inviting us. This life is very isolating as it is and those invitations and phone calls are sometimes the only things that keep us connected to the friends and family that we love but often can't see because of a plethora of reasons on any given day. We realize that friends and even family members have been put on  the back burner and that hurts everyone involved but know that we miss you and we won't be in this stage of life forever.

2. We are as new to this as any of you are. We had limited contacted with the special needs community before our son came along and we are still learning as we go. I'm pretty sure we will never stop learning.  Therapies, techniques, tools and schedules are ever evolving for us so we will always have something to talk about when it comes to his care. We want to involve you if you would like. We would love to teach you simple sign language and calming techniques. Just ask and that brings me to my next point.

3. Never be afraid to ask us questions. If something we say confuses you, you don't understand an abbreviation, you're concerned about how he's progressing , you want to know more about how we communicate….ask us. We are not people who get offended easily. Unless, you are blatantly mean, we will be more than happy to answer your questions. If you are blatantly mean, I will be more than happy to put you in your place J

4. Yes. We are still firm in our faith. We believe that we need Jesus. Facing challenges in life does not and should not draw us away from Him,  rather it shows us how much we need Him in His entirety every single day. We went through a short phase of the "why's? what if's? how comes? and why me's" but I believe that is the process that everyone goes through when there is unexpected change in their own lives and those around them. We found that our answers were  "Because I have a plan. Nothing else matters now. Because I have a plan and last but not least, Because I have a plan." We don't know what God's plan is for our lives or our sons life but we know that whatever it is, He will use it to His glory.

5. Raising a special needs child is not a bad thing. Have your heard me say the word "different" or "challenging" enough yet? Well, it's true. We face different challenges and have different schedules and we eat different foods. Different is not less. Different is not worse. Different is great. Our son is great and we are happy with our life. Do not feel sorry for us.

6. No. We are not overreacting about his food restrictions. Food allergies are not "all in your head" . He will not be okay with "just one chocolate chip cookie" and Yes, his reactions are that bad. Also, no he is not allergic to some of the things we restrict such as sugar, food dyes, soy and beef but they have a drastic effect either on his Asthma or his behavior. Also, he is okay with not knowing what cheese tastes like or a pecan pie or a regular birthday cake. With his sensory issues, he probably wouldn't eat those things even if he could.

7. Being in public is our personal hell.  Not because we are worried about others so much but about how overwhelming it will be for Big. I do not care if people stare at us while we do what we have to do to get through a grocery trip. Again as long as you keep your mean or hurtful thoughts to yourself, we are good. I'm going to let you in on something that I'm unsure a lot of you know. When you have sensory issues like our Big does, you hear everything, see everything, smell and taste e-v-e-r-y-t-h-i-n-g. There is no blocking out background noise or ignoring that scratchy spot on the inside of your shirt. Bright lights are brighter and more distracting.  Could you hold it together with that much bearing down on you? Imagine all of  that in addition to being a small child who has difficulty processing speech and has delayed emotional coping skills and you are in for one hell of a trip to grab some toilet paper or if you would like to go out and eat something that isn't homemade.

8. We are no more special than the parent next to us. Every parent struggles. This, Parenting, is the hardest thing you will ever do in life. Raising a child to be a healthy, happy adult who does good in the world is our goal as I like to believe it is for most. There are a lot of things that go into not making your kid an a-hole and all of those things weigh on all of us every day. We have coping mechanisms just like every other parent.  My husband has online gaming.  It gives him some of the social aspect of life that we miss out on a lot of the time and he gets to stab things. Win-Win.  I on the other hand am a compulsive planner and organizer. There are few things in our life that I feel like I have full control over so I sketch new ideas for the backyard, set up a spread sheet for garden planting for the next year or build a compost bin, and I make to-do lists. For me, looking forward makes the challenges of the day seem smaller and they weigh less on me. I can't keep looking forward if I'm too obsessed about the past.

     We hope this gave a little bit of insight into us. We also hope it has opened a door for further communication, not just for our family and friends but for anyone who may happen to read this.