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!

KNOWN AND FULLY KNOWN

What is it like in your home careing for your little one or not so little one? what do you think about as you change a diaper of a 10 year old who is obviosly going into puberty? Have you ever wondered what its is all for? Does she even know what we do for her? Does she know how much she has changed our lives? Will he ever know how much we love him?
Last week I heard something on 700 club that will forever change the way I see Megan and all children with different needs.
John Piper was on the show that day. For those who havnt heard about him...He is a man who died for like 90 minutes and visited Heaven. He said so much that was good, but it was when Gorden asked this question that I was made to be still. "Did you see any children in Heaven?" Johns answere was NO. John said that children are great but they arnt much on fellowship. He said that he belives that we are all fully developed in Heaven. Do you hear what I hear? Angels singing! DO YOU HEAR WHAT I HEAR? When Megan is in Heaven she will KNOW and be FULLY KNOWN! We will connect in a way My heart has longed to connect! She will be able to tell us all the things she has known,but could not express. We have a daughter that has gone to Heaven 21 years ago. Her name is Sierrah. I have always looked forward to seeing her and having fellowship with her, but I have not thought about the great healing that will take place when we finally reach our eternal destination! Glory be to God! She will know me, and I will know her. Your child little or big, verbal or non verbal, tormented with fear, or stuck in wheel chair! All these conditions TEMPORARY!In Heaven our children will be fully developed, and at peace! they will know us and we will know them Known and fully known.

1 Corinthians 13:12 (New International Version)
12 Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

Just do whats next

Its wonderful how God can use His word, written and spoken over and over again. Years ago I remember hearing a tape of Elizabeth Elliott. Her message was just do the next thing. It was mainly about people asking God about the call on their lives. God what do you want me to do? Elliott said do what ever the Lord has in front of you at that time and do it unto God. Just do the next thing. This word has been used over and over again in my life, and I'm sure Its not done being used.
Any one who knows us knows that we have 3 special need kiddoes one is an adult, one almost adult and our youngest is Megan. God only knows where her potential can take her. We really do not know what megan will be able to do. I mean c,mon exsperts told me that she wouldnt ever be able to read! At the age of eight this very same child began to read.
Having a child with special needs brings up many questions that parents of typical developing children do not have to ask. Questions like, Will he ever know how i love him? Will she ever move out? Will we have to put her in a therapeutic home? Will He ever be able to work? Will she be able to marry and parent a child, Who will care for my child when I am no longer living? How about will he ever be potty trained? These questions are enough to overwhelm us as parents. If we can simply learn just to do the next thing than we can approach life in a peacefull and well balanced matter.

Do whats next: by Me Arlene Misner

Its ok just do the next thing...
no what ifs to dred no fear to follow
just have joy in today
and faith for tomorrow.
Dont worry, dont fret,
what good will it do?
Remember...
God has great plans for you!
Just read the word
than do your best
and trust in God
to do the rest!

Kick autisms a--

As I begin this blog I am remembering how lonely this road has been ,but how blessed our lives have become. There is such a depth of love in our marriage and in our family that was not here before. This is going to be about overcoming and being real in all the muck or poop of it.
Today I want to start with a light hearted funny. Sometimes our daughter says the funniest but most real things I ever hear. Today we had a visiter and Megan as always wants to educate her about autism. Megan says I have autism. she says it a couple of times than says Im kicken autisms ass! LOL o my without even thinking Wendy and I started celebrating! Does Megan know thats what we are doing? Does she understand? I belive she understands so much more than she can communicate to us. The funny things about stuff she says like the last remark is we dont talk like that. Im sure I havnt used that phrase, not out loud any way! But that is what we are doing. Megan has come so far and can communicate so much more. We are not done! They said shed never be able to communicate back and forth...but she does. They said she wouldnt ever read ....but she does. In all of this i find that when we were trying to teach Megan, We were the ones who have learned the most, not because our abilities but because of hers.