To the new parent with A special child

I have been thinking about the days when Megan was first being diagnosed. Life has changed so much since then.

 I was wondering how many moms and dads out there are just entering into the culture of autism, or any other realm of special needs. Can I tell you something?  I understand your hurt. I know what its like to be crushed as you watch your little one display odd behaviors. Behaviors that society will label them an out cast for. Behaviors that are weird and that will cause others to back away from you or judge you for.

 Dear one I want you to know right now that This is not a judgement on you from God. This is not a LIFE imprisonment. This WILL change you and it will crush you, push you down and, destroy who you are right now. This will take all that you have deemed important and push it back . Somethings that you find very important right now will not even make it on your priority list any longer. You will cry, You will be angry and dear one you will grieve.

 If you go through the process with God you will come to accept and appreciate your life. You will learn how to truly give your love away unconditionally, and in doing so you will learn what real joy is. You will be a master at having peace even in the middle of chaos. You will learn to fight the devil like never before because my friend you will be fighting for the life of your child .... I love that plaque that is forever etched in my soul, I'm not sure who wrote this or if I'm wording it correctly but  It reads something like this, "Having a child is the only way we get to see our heart walking around on the outside". Awww Isn't that so true?

 I know that when you had this child , when you first met him or when you named her....I know that you were not planning on hours of therapy ... OT, PT, ABA, You may not know what all those letters stand for now but Dear one you will. The ballet and baseball may happen but will be pushed aside for these instead. You may get to learn things about nutrition and supplements that you never wanted to know. Yes eating may never be the same again.
You see life as you know it today will simply fade away.

Dear one remember this God is good, He loves you ,and your little one. He did not give your child autism or what ever diagnoses is being considered. He didn't do it but oh He can make glory out of it. I know that reading this right now may be hard and you may be angry, You may even be angry at God. I was. If you are, simply tell Him. He can handle your anger, and He all ready knows about it any way. He wants to comfort you and wash your tears. He wants you to know Dear one that He will be with you every step of the way during this process and all other processes to come. It will be better if you notice Him there with you. I promise He will never leave you. He loves your child more then you do and has a great plan for them. He does not see disabilities OH no I believe in every one of us what He sees is His heart walking around on the outside.

Its so amazing now to look back at what my life was, at who I used to be. I am okay....NO I'm better then okay I am more of what God has created me to be. Dear one I love you and pray that you will live Gods full purpose for your life.

In His LOVE
Arlene

ALL THE TIME

God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.

Waken up brand new day bow my head
 God have your way
 Lead me guide me through again
Where you want me Lord do send


Getting ready for the plan
 Appointments commitments
Done all I can
Showered and dressed just one more thing
Wake up dear one and get her ready.

God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.

Special ones with special needs
Cant really get the meaning of plans
Yelling screaming apparently apposed
Calling to reschedule  appointments again.

Blender broken fridge is leaking
Anxiety rises w. each appointment made.
My life is different at times lonely
Don't wanna live my life afraid.

God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.


Feelings of helplessness and self pity arise
As fear tries to make its way in.
Than He reminds me of this mornings prayers
I hear me say where u want me do send

Apparently He wants me here
 In the midst of His spirit
Inside my home
Where we dance and sing and praise our God
Even when none of our plans get done.

God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.

In His LOVE Arlene

Megs Gluten free casen free protien bars

We usually let our little dog Miss Bell sleep in bed with us. She's warm and cuddly but most of all she will awaken me if Megan gets out of bed, because Jesus knows I will sleep right through it all. Where did the days go when I could hear my little one suck her thumb or roll over? Man I was sharp, let me tell you. No one could sneak up, sneak out, sneak nothing! Well not any more. You see; when my head hits the pillow the world disappears. I don't know why. Not much has changed. Yes I am older, but that is NOT the reason for my coma like sleep. You see, the reason is simple. When it’s finally time for sleep I am exhausted baby!

OK, now that we've got that clear. I will just get on to what this whole blog is about any way. The other night while I was sleeping Meg got up! The dog was not in my bed. She was in her crate like a good little dog. NOT! I heard my husband waking me up like this "Honey Megan's up" or something like that. Well you get the point, right?

I get up to find her in the kitchen. She is saying things about food mostly chocolate. I thought perhaps she was hungry. YEAH maybe that's why she's up so late. I did what any good nurturing mommy would do. I tried to give her food. She was not interested in eating at all, which is rare for Megan Anna Banana. (That’s what I call her) THEN I saw why she was not hungry. There on the table was evidence that she had been up allot longer than we knew. Her box of gluten free protein bars. A box of 12 bars almost GONE! $17.00 a box! "OY vey!" Barbara Streisand said that one time and I thought it may be fitting for this. (I'm not really sure what it means)

I don't know about you but I am not going to just go out and buy another box! I can't just get these at any store. Megan's food needs to be purchased at Whole foods and that store happens to be like 35 minutes away from my house! Still Meg would need some kind of protein bar that would be readily available. So I thought, "Hey, why can't I make some protein bars for her? Someone had to come up with that protein bar recipe, right? Then charged 17 bucks a box! So I began to look at recipes and think about what I would want in her bars and I must say I made some pretty good, pretty healthy, good for Megi protein bars.

I thought I would share the recipe with y'all. I hope you enjoy it.

I went to allreccipes.com and ended up using the Farina bars recipe for the backbone of my recipe.

MEGS G-FREE C-FREE YUMMY

COCONUT CHOCOLATE

PROTEIN BARS

1/4 cup Earth balance softened soy free

1/4 cup unsweetened applesauce

1/2 cup organic sugar

3 teaspoons ground flax seed

1/4 cup powder cocoa

1/3 cup honey

2 tablespoons lemon zest (don't know if I really used that much)

2 cups dry cream of buckwheat

2 teaspoons baking powder

1/4 teaspoon ground Cinnamon

1 cup coconut Amando yogurt

3 egg whites 1 yoke

1/2 cup flaked coconut, organic unsweetend

1/2 cup sliced walnuts (optional)
Today we added chocolate chips too :) (no longer optional ) YUM

Directions

1. Preheat oven to 350 degrees F (175 degrees C). Grease a 9x13 inch baking pan.

2. In a large bowl, cream together the butter, applesauce, sugar and honey until smooth. Mix in the lemon zest. Combine the cream of buckwheat, flax seed,cocoa, baking powder and Cinnamon; stir into the creamed mixture. Blend in the yogurt and egg whites. Try not to over mix, or the bars will fall. Finally, mix in the coconut and chopped or smashed walnuts if you like them. Spread the mixture evenly into the prepared pan.

3. Bake for 45 to 55 minutes in the preheated oven, until the edges are brown but not the top. Cool and cut into bars.

This is why no one else eats what Meg makes , She likes to taste after each stir.

Megs faverite add on

look at my

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