A SEARCH FOR SIGNIFICANCE

Hi there Its been a long while since we've talked. Ive missed you. We have been busy with life. watching kids and grand kids grow. Watching them become what they will. As we see Gods hand move upon their lives we cant help to be in awe and hold gratitude inside our hearts.
I'm looking forward to this new year as I  slowly putting away all of last years sparkles and ornaments. Its been a really hard but good year.  Every year as I put away Christmas I never put away my joys. REALLY  I keep them out... all year long. This started about 3 or more years ago when I decided I was going to collect Joy. After all everyone collects something right? This year I am thinking of not putting away my peace, my faith, or my love. Yeah I think I'll start collecting those too. As I am putting away last year I'm thinking on the lessons I have learned so I am careful to keep those out too.
Right now I'm remembering a couple weeks before Christmas and decided I wanted to share a thought I had with you. after all you are my very favorite!
I was honored to be invited to a very special show. It wasn't the best light show. It didn't have any headliners that people would know (not to many any way) The band was off time and didn't seem to have there gig together,and the announcer didn't have the poise of Miss America....But still I was honored to sit in the EXTRAORDINARY Picollo school multipurpose room and watch as one by one children would take there place as the star.
I don't think I have ever been more moved or had my breath be so taken away. Tears filled my eyes as I had what might be the biggest and most important revelation of my entire life.
The revelation you ask? Simple my friend it is this one small thing.
We as human beings on this great planet earth all want to be significant. We all want to matter, and whats more important to catch in all this is We all do matter.
I watched as children who couldn't sing would stand on stage or sit in a wheel chair and do what ever they could. They all were moved in someway by the music and when they were done with their turn they would go off stage taller and prouder than when they first went on. I saw them light up and really sit up  taller. I watched as parents sat in that room and clapped and rejoiced at what their kids and these kids could do. It wasn't a night of seeing disabilities It wasn't a night of seeing what has crippled our kids. No it was much more than that. God has made every single one of them for His great purpose just like Hes made everyone. When I thought about this for a while I really believe a wall came down in my heart. We are all so much more alike than different. we all want to be loved, to be treated as an equal, to have a friend even if that doesn't look the same in every ones life.
I understand that this may not be a new thought or some great revelation for you. You may have all ready walked in this before. To me It was life changing. I have been Megan's mommy for 11 years and in that roll I have been nurturer, disciplinarian, and advocate....ah but what a greater advocate I can be for her if I can stand face to face and embrace her as a whole entire person,What a greater advocate I can be for her if I can see her as even more than I have before. My sister in Christ and fellow human walking side by side. I was honored to be at the greatest show ever that night, but I am so very honored to get to help Megan find her significance in this world. I want more than ever to change the worlds view of these kids specially as my view is ever changing. Thank you so much for listening. O and hey have a very wonderful and prosperous new year! I will be back soon

                                        In His LOVE Arlene

This is my life

"Good morning" I say as I go into my daughters room to wake her. She screams "GO AWAY!" I go in about 5 minutes later and give her medication. One to prevent seizures and another that helps her not to be so anxious. On a good day in about 15 minutes she will come out looking for breakfast. I have to turn off food so I can go wash her...because you see she usually has a BM during the night, and she itches her bottom because of discomfort. Her finger nails and hands have to be cleaned before she eats. She doesn't like this at all. I get her in the shower but usually she does not want her shirt off yet.  Picking my battles... shoot let her shirt get wet. I put shampoo on my hand than on her hair as we sing wash wash wash your hair...I say close your eyes (she doesn't) so she gets upset when the shampoo runs into her eyes. we do the same song and dance for rinsing her hair, than on to the wash your body song. some times she likes to stand in the shower for a good 10 minutes she seems to love the water on her back. She sways side to side with her eyes closed.  (wish she could transfer that skill to shampoo time) I finally say out? want out? she says yes. now we sing dry dry dry your hair.....tummy...bottom....well you get the picture. shower time leaves me drenched. time to get dressed. I have to help her get dressed every day...I start it out and she finishes.  We call this minimal support. it can be pretty entertaining sometimes. I will put her pants on the bottom of her legs and she will not pull them up she will just walk around like that not even noticing. That's our Megan Anna Banana. Finally its time to eat and boy is she hungry. I have to remind her to use her fork or spoon about every 3 bites. Shes come a long way. After she eats she clears her plate and says look at my face. I wash her face and hands and get on with my chores. Most of the day she paces through the house and follows me around. I use this to have her help me with house work. When she is home she is with me almost the entire day. She doesn't do well if I shut a door for privacy. I'm used to this day in and day out.

 Some time after Megans diagnoses I was hit with the reality that she may never move out. I understood that her level of care would be higher than all my other children. I laid down plans of going to work or school.   You know what? I never felt like she took my life away from me. I have heard others refer to their situations this way, and my heart breaks for them. The bible says no greater love has no one than this that he should lay down his life for his friends. What greater purpose could one have than to nurture and raise a child of God. Megan has not taken any thing from me. She has given me great purpose and I haven't stopped living, After all this is my life.

What does healed look like?

Last night I watched this movie with my husband, and there was  line in it that sparked somewhere deep in me. Its kinda funny though because I don't remember exactly what it was. I just know the meaning. The show was called that's what I am. It was about an out cast boy. They called him Big G. He was tall and awkward. He had red hair and big ears. In a class project the teacher partners him with a kid that was sorta popular...you know not a geeky awkward guy, but not the foot ball jock either. Any how a friendship blossoms. One night the kinda cool kid asked his mom why God would make some one look like big G. Its not fair he said. I love what his mom said "Perhaps God doesn't think any things wrong with him" hmm That's the phrase. So now I'm asking this: How does God see my kid? what does He see when He looks at her? I'm sure there's not a puzzle shape floating above her head and every one else who's been diagnosed with autism. Couldnt you just see it all sorts of symbols floating above every ones head? No Im sure thatts not how God sees us. God sees the whole person The one He knit together in the womb.
This morning we went to church- Daddy , mommy and, Megi. Caili stayed home because she hasn't been feeling well. As soon as we find our seats the ones in the back reserved just for special needs  (Have I ever told you how much I love our church?) Today was a special day because it was baptism day. Megi loved it and I'm  telling you she was lit up! we worshiped while people were being baptized. Every time a person came up from the water we would cheer and celebrate as I'm sure the angels were. Megan just watched and smiled. I began to tell her in her ear some things about baptism in a way she may understand like "They are getting Jesus." I said things that she has heard in our circle like "They are being born again." One day she may put it all together in that beautiful head of hers. She may even know so much more than she can communicate right now. So back to my question...What does healed look like? If healed means knowing that God is real and that He loves you...hmmm If healed is not worrying about tomorrow or fretting over what others think about you....If healed means talking about God and Jesus to perfect strangers with total boldness...well than I think Megan is more healed than most of us. She begins her prayers with Thank you Lord for Megan....and Thank you Lord for Jesus. Now That's a thankful heart. I am amazed at all God has done in her and how far she has come. Our kids are most precious to all of us...NT, ASD, ADHD, DS, ID, What ever....I think as parents and as the professional community that work with these special ones in our world -we  really need to start asking ourselves...In this child what does healed look like? Megan told me long ago I'm healed in the Holy Spirit....You know what? I believe she is.


In His LOVE

Arlene

TUMMY TROUBLES

I have a feeling this may be the strangest blog ever written or post any way.... probably full of rabbit trails
bare with me its been a tough couple of weeks.


Megan has had tummy trouble since about the age 3 or 4 I'm not really sure when I first noticed it. Either constipated or well the opposite of that. Ill spare the details.

Megan also has some pretty tough behavior challenges hitting, pinching and screaming.

When Megan started going through some hormonal changes her anxiety was over the top which caused her behavior to be  totally UN manageable. Not only that but she would ramble on and on switching moods like a flickering light. She was always a tough one screaming cuss words and hitting most of the time because she was in real pain and didn't know how to say hey my stomach hurts dang it!

We had been praying and praying for God to intervene and help Megan so she wouldn't behave this way. So it was  very painful for me to come to the place where I had to admit that in order for Megan to have any kind of life outside our home we were going to have to give her meds.

I was very clear to the doc about Megs tummy issues I said she can not have meds that will constipate her. Megan was prescribed resperedone. It was an amazing transformation. Its as though the med slows her mind down enough to where she can understand more. Shes able to communicate better and shes more affectionate.

back to the tummy issue
 we finally got a referral to see the only pediatric Gasternoligist in town. only took YEARS!

So We go see Dr. Gregory He seemed very,educated, thorough ,and most of all compassionate. Megan kept saying "Megan's a nice girl" and he would look at her and say "that's what I hear." Megs family Doctor had her on a regiment that wasn't working magnesium citrate 2 oz w. 4 oz of 7-up and only if she didn't go in 3 days. so its been well over a week and still no movement. OK so the tummy doc says to me mom your not gonna like my new regiment. day 1 -10 oz of magnesium citrate3 x.......
he ordered a number of tests including cliac, thyroid, xrays, O AND
 guess what  he looked  up respiridone on his site he needed a password to look up side effects for her meds. Seems to me that parents should be able to have access to this site.  IT stated that 21 % of people who took this med suffered constipation! It didn't say any thing like this  on the site I went to excuse me the sites I went to.
So now of coarse he wants me to now call her Neurologist and have her switch meds.
Since she has had this problem before the med I'm not wanting to jump to this, specially because it helps her tremendously!

We have tried so many different interventions  for both her tummy and behavior ABA,different diets, juicing supplements, nutricuticals... and most have helped in some way...Just not like we would want.

Yeah so Im always talking about poop One of my very first conversations with my pastor some 20 years ago just happened to be about poop (I watched his toddler in the toddler room) Megan is 10 and not yet mastered the potty training thing. She has autism and Mild I.D. for those of you that haven't got the notice yet I. D. is the new M.R. intellectually disabled.

Any how sorry bout the rabbit trail thinking out loud again.I'm just so back and forth right now! So let me tell you what happened tonight.  We chose to start her regiment today. Man this girl is a trooper she drank this stuff 10 oz diluted w. 7up 3x so it was like more than 90 oz of liquid! her tummy is like a watermelon. She kept wanting to get in the tub (do you blame her?)She was soaking in her 3rd bath of the day when she stood up she stood there for about 5 minutes or so I was beyond the bathroom door in my room where i could see her.  All of the sudden She turned grey and her eyes fluttered like someone does when they are about to fall asleep. REMEMBER shes standing in the bathtub. Instantly I was next to her catching her as she fell down it looked like a tiny seizure or fainting spell. after wards I just wanted to cry. she laid  on the floor for a bit as I prayed. OK look I know that resperedone is toxic and I'm a health NUT! I know that her seizure med is also not what we would call "clean" but whats the alternative? My daughter is sick. The things I am putting into her body that help her live a more typical life are poisoning her! how do I continue on this road?  We need answers...She needs a solution.

 You know what People have told me that autism is a blessing from God and I'm sorry but I don't buy it! all these things that seem to be parts of autism in these kids life NOPE- torment and pain not from my LOVING God. Megan is from God but autism is from the pit! God doesn't make us sick He heals I am crying out for the next step in all this.

It is almost 2 AM and she is sleeping next to me as i sit on the couch bloggen away my frustrations. I know God has the answer to all this and I know Hes not hiding them  from me. I'm sure Hes talking to me and telling me whats next I'm just like a child not understanding my Fathers communication, But He is patient and doesn't give up on me. He knows my hearts desire and He is with me in all of this He is with her holding her when she is in pain. My purpose in posting this is not only to blog out my frustrations BUT to be see through. I know there are parents out there that go through this kinda stuff and worse. Sometimes just having another person understanding some  of what you are walking through can be the greatest therapy ever. I'm waiting for His voice for His lead. I know there are others waiting to hear also. As she lays there finally asleep oops spoke to soon any how I was just thanking God for His mighty hand in our lives. I'm so thankful for my relationship with Him. This could be so much worse. My family could be walking through this without knowing Him and His loving mercies wow there is no way I could be walking through this with out Daddy God. You see I always know that no matter how bad things seem at the moment that Hes got great plans for me Jer 29 V 11 is the place He always leads me back to. For I know the plans I have for you says the Lord plans to give you a future and a hope.

Well than I hope you enjoyed sharing our night ...or morning with us. I promise to try and keep my posts shorter and more ... um to the point If you didn't enjoy this post o well Ill have a new one in a couple weeks or so Until next time... Peace

We are the lucky ones

This is an older journal entry that I was reminded about. Its about a year old. thought Ide share.


Our daughter Megan who is almost 10 years old was diagnosed with autism 4 years ago. This has totally changed my life. Our entire family has been affected. I cannot tell you how many times Ive cried because I knew that I wasn’t being the mom the other kids needed. I do think that our family has really suffered in some major ways. In areas like social events (stopped going) fun family vacations (stopped doing) entertaining at our house (not any more) There has been so many times I look over at a little girl having a conversation with her mom and I have felt that Its not fair feeling, why can their daughter do and enjoy a normal life? How did they get so lucky ? yeah the lucky ones.
It has been 4 years since the diagnoses and God has taken us through many things. I am no longer so depressed about our life (her life) She has come a long way and we are so proud of her. Shes a trooper. I don’t usually find myself looking at other families like I used to either, but every once in a while some little thing will happen or remind me... this morning I drove by her school and saw all these cars every where...O yeah there is a 4th grade concert today...OUCH ok that hurts . she will not participate she may not even know they are doing it. As I drive by tears feel my eyes I bow my heart to Daddy God and say help me, turn me around....don’t let me stay in that sorry place of ahhh why are they so lucky??? Whine, whine ,whine. On my drive I’m remembering Our little girl. She sings this ...Hey now this is my desire consume me like a fire cuz i just want somethin beautiful. Touch me I know that I’m in reach cuz i am down on my knees waiting for something beautiful yeahhhhh… she will sing w. me for a long time and I cannot express to you the joy that feels my heart even when the words are wrong and in some funny order O man I godda tell you that’s something beautiful! Then I really like how God just gets in there and can change our way of thinking in an instant even before the sorrow has left completely.I’m reminded about how sometimes as parents of typical kids we can take these things for granite things that parents of special need kiddoes would throw a party over. I remember the first time Megan jumped in a jumping house she was like 6 there were other kids in there too. The only parents that were watching in amazement were Megans parents, yeah us. No one really knew that it took like two hours of step by step... touching the side of the jump house saying jumping is fun ...ect . That day Megan faced a major fear in her life. We were the happiest people in that room I know we were.... Today at Megans school not all the parents but many of them have no clue how wonderful it is that their child can stand on bleachers and sing with a choir. Many of them don’t even want to be there! In a moment my mind is fixed in a different way as I realize something maybe they the typical parents maybe they are missing allot ....wow maybe we are the lucky ones? Just think We are the blessed ones.

Things I never thought I would do....as a mom

I never thought I would chase a stranger down in a store because she was saying mean things to my toddler who was having a HUGE melt down.

I never thought I would have to know how many steps need to be taught  for using the potty,  putting on socks, or clearing a plate.

I never thought I would be buying diapers for a 10 year old.

I never thought I would be going to ABA, speech and Occupational Therapy instead of ballet or baseball.

I never thought I would have to fight so hard for someone to get an education they need and deserve.

I never thought I would learn to block punches from my own child.

I never thought I could feel so desperate to help someone.

I never thought I would fight to get my child in a school made for children with disabilities.

I never thought I would hurt so bad when someone said the word retard even if they didn't mean it "that" way

I never thought I would feel so alone even in the midst of a crowd.

BUT you know what? as heart breaking as this process has been I have found treasure inside the tears.

I never thought I would be so thankful when my child bounced in a bounce house for the first time when she was 7. The only parents even watching were Megan's parents and we were crying from the joy that filled our hearts.

I never thought about what it was to unconditionally love some one. (yeah until now)

I never thought I could be so happy when a child finally read after 9 years!

I never thought I would meet  a group of parents that would be better described as super heroes. Extra ordinary is a perfect way to describe them.

You know what? I really wasn't aware that autism is an entirely  different culture. well I'm well aware now

AND, finally ....

I never thought my heart and my life could ever be and would ever be so full!

She has come so far.

Its amazing how life changes and brings about changes inside of each one of us. We make mistakes, we learn, we grow, and we change. Megan is 10 years old and reads site words. She goes to bed with out a fight. Bath time every night before PJ'S and bed. She sits down at the table to eat every meal. These may not seem like a big deal to most people, but to us these are huge milestones! They told me she'd never read. Trying to get her in a bath or shower used to be an all out war! She would scream , hit ,and pinch, leaving bruises all over our arms. Bed time was also a  nightmare. At dinner our family would sit down to eat but not Megan she would run around. Every once in a while she would come take food off of her plate or our plates, What ever she wanted she would just grab I'm not kidding you here. Dinner at the Misner's was just like a scene taken out of the miracle worker (story of Helen Keller) screaming yelling pounding on doors It was so chaotic! Five years ago I was in a different life than today THANK YOU JESUS! Waking up some mornings finding walls painted with poop, or worse a little girl passed out because she got into the med cabinet and ate her clonidine (The entire bottle!)  which brings me to remember those days...Days of shaming myself because I was falling short on being the good wife and mom I wanted to be.  I mean c'mon what kind of mom wouldn't hear her child get up and get in the medicine? Ill tell you what kind a very tired mom. a very exhausted mom, a mom that was barely hanging on herself. There was a long time in that place where I forgot how to smile. I still fall short at times, but I quit shaming my self. I am so proud of Megan. She has worked  hard on things that come natural to most people. I am thankful to God that He has brought her this far and He is not finished with her yet.You know what? I am thank full to Daddy God that He is not finished with me either. Each day I'm a little closer to what He has made me for. I'm so glad  He finishes what He starts!