May 25, 2011

Stop the Ride

I know that the Bible tells me that God will give me nothing in my life that is to big for me to handle...with Him. I know that He brings people and circumstances into my life to grow me make me a better person - a more serving person. I know this. I'm not finding that this knowledge is comforting to me on a daily basis just isn't - that's honest. Everyday...every second, minute, hour seems like an emotional roller coaster in our house. Some days I'm happy to go on the ride...some days I just want to scream for the ride to stop and for the ticket man to give me my money back...this wasn't the kind of ride I payed for.
Living with a child with AS (Asbergers) is not easy in any way. Zac and I were talking yesterday about how it seems like Brady is doing worse then ever. I don't actually think that HE is worse...I just think that all of his little differences are more noticeable and harder to take now that he is older...they just stand out more. He is louder...he yells at me on a daily basis(but now that he has a huge vocabulary his words can be quite...well...shall we say "bold"),he is more hyper than ever before....he is ALWAYS bored. Always.
When family was here for the last couple of weeks he was a little better just because there were a lot of changes and people to keep his brain occupied. There was actually only one screaming meltdown while grandparents were around...I believe Mama C was here for that. :) When he's home with me all day he is easily frustrated because there is just NO WAY that I can ONLY be his mother. He wants me to do everything for him all day...listen to him all day long about whatever is in his with him, watch him play his computer game...only cook foods that he likes. If I dare do anything that is contrary to what he wants (and it happens often since he can't run my life but the fact is that he doesn't KNOW he is) then there are huge struggles. Something as simple as him asking for a glass of water can be frustrating because if the water isn't cold enough he won't drink it...he gets REALLY made because he says that water is suppose to be "fresh" and he equates "fresh" with "cold." I'm forever filling up the water pitcher and keeping it in the fridge just to make sure that he doesn't freak out if we are low on "fresh" drinking water. Today I was exercising and he ran past me at 100 miles per hour (remember that he is actually Cheetah man) and his head smashed into my eyebrow bone. Well, I was the one that got hurt - not him. I mean it hurt BAD and I had a headache for at least a hour...not to mention that I was super hot from exercising and my heart rate was already escalated. He became IRATE that I was upset about being hurt. I mean he was mad...screaming, crying, completely out of control. I was definitely not in control of myself either so I asked him to go into another room so mommy could cool down. This took 45 minutes. The point is that his brain just doesn't know how to respond to pain or emotions. Sometimes I'm very understanding of this but when I have one bad moment of being impatient out of 3 days of BEING patient I feel like a complete failure and like I'm screwing up this precious gift of a child. Grrrrrrr. Sometimes I don't understand why God gave ME...Alyssa...a child that takes 100% MORE patience to raise on a daily basis than a *normal* child. my 50's...perhaps I will know. One thing for sure...when Tristan cries a little or is upset...or a child in a grocery store his throwing a tantrum - it doesn't affect me AT ALL. Yes, someday I will have the patience of Job - I will be known as the Patience Queen. I'll write books and give conferences....sell little stuffed bears that are embroidered with a giant "P"...I may even have my own fragrance line "Patience X 4" or some other catching name. Watch for it for it.
I love Brady more than words could ever express....I would do anything for him - I'm just tired. Tomorrow will be better...but today I'm tired and I'm glad it's bedtime and my ears and heart can have a break. :)

There have been happy times and there...that's how our life is. There will be a hour of unruly craziness where the family feels like it's just a MESS, and then there are sweet times and lovely memories made. Tristan and Trinity are in love with the pool ever since the sun decided to show itself on a daily basis. Trist would be out there for hours and hours if we let him (his skin is super fair so I have to bring him in for breaks often.)

I know that God gives me sweet moments to even out the rough ones. These little kids are just WORK yall...they just take up every part of your being. They just exhaust you emotionally and heart breaks and then....chocolate chip cookie making in the kitchen, or forts made out of the dining room table and blankets...or hugs and kisses and funny little words start healing all of those hurts and my heart becomes whole again...I'm refreshed and ready for another round. Being a mother is so fulfilling. It's what I've always wanted to be and what I decided to make my life about - I never imagined what it was that I was asking for and at the same time...a small part of me thinks I knew exactly what it was that I was asking for - and I wanted it anyway.

The kids were stoked about having pancakes for dinner the other night. My *silly face cakes* were inspired by Ihop except mine have faces made out of fruit stuck on with cream cheese...theirs were all cool whip and chocolate chips. :) I also made turkey bacon and the kids used that as hair and kept biting off pieces to give their pancakes a *trim.*

And this little Snuggle Bug...he just takes it all in. I wonder what he thinks about all the noise and chaos - I'm guessing it comforts him since he's been part of it ever since he was conceived. The nurses told me that they thought he was probably just cranky at the hospital because it was so quiet there. One lady came in and said "don't you have other children?" I told them "sure enough" and they said that Finn was use to the noise from when he was in utero and that's why he was upset...and he needed more food than just colostrum since he was such a big boy. :)


Sara said...

I was thinking about you and prayed for you today. My Abigail has two ear infections and CAN NOT hear very well right now. It is DRIVING ME CRAZY! and I hate myself for getting so frustrated with her. I know she can't help it. I started thinking about what it would be like to have a deaf child and how difficult it would be. That reminded me of you and some of my other friends with special needs children and gave me a chance to stop and pray for you all.

I know exactly what you mean about the little ones making you tired and keeping you busy! I can totally relate to that part of your life, but I just have no reference point for the extra energy and patience it takes when you have a special needs child in the mix.

I know that there must be many times you feel like you have nothing left in your tank, yet you have to find it somewhere because your children need you. I will continue to pray for you -- that the Lord will continue to fill you and that you will find times of peace and rest often throughout your days.

Jeanie said...

I'm sorry Springy! I wish I could come give you a day off. I know Holland can be a blessing and at the same time very exhausting. It sucks up everything you've got and wants more. Just wish I could come do some loving on you and your littles. Praying for you!
By the way, don't stop sharing! It helps me know the best way to pray for you, my special girl!

Julianna said...

Hey Alyssa! My heart breaks for you as you share your heart. You are a good mama. Know that.

As a former teacher, I know that kids with AS need A LOT of structure. A picture schedule works really well... make a bunch of pictures of different activities he might do and put velcro on the back and then have a strip on the refrigerator or something so he can easily see it and keep track of his day. Take pics of him, brushing teeth, playing outside, reading, drawing, bathing, etc. so he can have predictability.
With Finn's arrival he is bound to act up, totally normal and again, not your fault.

Lots and lots of structure will keep him from being bored.

Cindy said...

I know that feeling of wanting to get off the ride! One time when Billy came home after a very long day....I met him at the door and said i'm going for a walk...and i just walked out.

He came out and asked me...Are you coming back? I said MAYBE!

CorleyAunt said...

Julianna has VERY sound advice. Also, thinking about the cold water thing, see if you can find a small drinking cup with a lid and handle (or even a small mason jar with lid) that Brady can fill HIMSELF at the faucet and then place in the refrigerator for his special Cheetah Water. :>D This will allow him to feel "in charge" of his special need and will also give him insight into the "doing" of one of his needs. Also, don't forget to direct his attention to his siblings and ask him, "Brady, do you see Tristan doing _____(whatever the behavior is that is working your last nerve)? No? What IS he doing? What do you think YOU should do right now?" This will help him not only be socially aware of the others in the family but redirect his attention to solving his problem of the moment. Are you looking into online support groups for parents of AS kids? Might be worthwhile for you. Love you and praying...

Julianna said...

Alyssa, they are called PECS and you can download them free off of the internet. Here is a link to get you started:

Erika T. said...

Thanks for being so honest, Alyssa. I feel ya on the having to depend on the Lord every HOUR. Life is so sweet as a kid and sometimes it just gets so HARD as a woman (and I don't even have kids to add into the mix!). Your honesty encouraged me today. I'll hang in there even as you are. Love you and love sharing your life with you through your blog.

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