Understanding Asperger's and How YOU Can Help

This is not going to be a very popular post and honestly, I don't care.

When I first heard that Adam Lanza had Asperger's, my heart sank.  Fear filled my body and my thoughts rushed, "What can I do to prevent this from happening to my son?"

Christopher has a horrible anger and rage problem, but he has the biggest heart of any child I have seen before.  Well, that is not true, he has the same generous heart as my Kayla and Kaitlyn.  They bless me over and over when they are more concerned for a homeless person than for themselves, or for a child that won't have, or for an animal on the streets.

While I don't have an answer to that initial question, and to keep fear from rising within me every time I see a picture of one of the babies or a story of Adam Lanza, I pray for my son. I put my hand or hands on him, whichever is available, and I pray.  Let your children hear you pray over them!

I am making a point to make sure Christopher understands the difference between good and evil and how satan can take a simple problem and make it huge.  God has opened the door for me to talk more about Christopher's anger with him since the shooting.  Last night he cried because he didn't understand evil and how rage, when used in a bad way is sin.

I have made it a point to not read much about the children and the shootings.  My heart is breaking and I can't.  However, this morning, I saw an article on Fox10 News that EVERY ONE needs to be read.

Parents, it is YOUR job to educate YOUR CHILDREN about children and adults with special needs!

When you see them teasing or laughing, it is YOUR JOB to stop it!  If you do not stop it, you are just as guilty as the child.

We must educate ourselves on Asperger's.

These kids aren't freaks.  

They are just a little different, in a gifted way, but they are also different in a way that "normal" people will never get.

Why you ask?  I'll be glad to tell you.

1.  They don't judge others for the way they look.

2.  They don't de-friend someone because they react differently.

3.  They don't talk about others in a negative way.

4.  They love unconditionally.

5.  They don't care what you wear (or what they wear for that point! lol)

6.  They don't care if your body does weird things when you are nervous.

7.  They don't criticize a child that is rocking back and forth.

The list could go on, but the point is, these children are the least critical, yet they are picked on the most.

Why you ask?  I'll be glad to tell you.

1.  Because they look just a "little" bit different.

2.  They react differently to new situations or change in schedules.

3.  They are the ones getting talked about and teased.

4.  They are not loved unconditionally.

5.  They usually hate to wear clothes and when they do, they probably don't match.

6.  They have weird body movement called tics.

7.  They rock back and forth or side to side when nervous.

I am not making an excuse for what Adam Lanza did, by no means.

It is horrible and he will be held accountable unto God for each of the lives he took.  We can not allow people to use their disorders or disabilities as an excuse to sin!

I'm just saying, as the mother of a child with Asperger's, Tourettes, OCD/Sensory/Anxiety Disorders, that does get made fun of, I can understand his pain and THAT breaks my heart as well.

WHAT Is Normal?!

I am struggling today.

No, I've been struggling for several weeks now; it's just to the point now I am slap worn down.

In the midst of every day life we expect trials; I know this.  The scriptures tell us in John 16:33 that we WILL have troubles in this world, but that we are to FEAR NOT for He has overcome the world.  It also tells us that IN HIM, we can have peace.  *Sigh . . . . * 

So where is my peace?

While I continue with my journaling, my quiet time, and even recently, our family has started reading the Bible together at night and having a prayer time involving all of us, I still have no peace,  no comfort, no sense of making sense.

Instead, I am angry, jealous, and convinced God messed up big time when He gave me not one, but two special needs children.

I know.  I am sure as you read that you gasped thinking I am a horrible mother; and that is OK for you to think that.

I love my children with all my heart; probably too much. 

In fact, on a side note, let me give you an example of why I say that.

My oldest daughter, Kayla, flew out Thursday night (a week ago tonight) to be with her fiance that is stationed in San Diego, CA.  They were married Friday at 2:45 p.m. Pacific Time at the court house amongst some friends. 

Kayla kept me alive through years of drunken stupidity.  MANY times I wanted to die and had it all figured out how to  make that happen; but the only thing that stopped me was the fear that resonated deep within that if I killed myself, then her dad would raise her.  He was a drunk (and still is) as well.  In my, at the time sick and demented mind, I could do a better job than he could with raising her, so I always chickened out.

I've carried that secret with me for many years, until now. 

While cleaning a house the Friday afternoon after she flew out, I lost it emotionally.  I cried for two house, sobbing and weeping; realizing she was gone.  Amongst my cry out to God, I said, "God, how will I ever go on without her?  She was my life!" 

It was then, I heard from God.

He said, "Stacey, have you ever wept over the things of God like you are weeping over your daughter?"

THEN, I wept in seeking repentance, because the answer, was "No, Lord, I have not."

In trying to keep that ugly honesty in the forefront of my brain, to try and love God more than my children, and to weep over the things that truly cause God pain, in dealing with in general "life" issues, there still remains the fact that I have two special needs children that I love and adore above all things; that bring smiles to my face time after time again, that count of me to help them when they can't make things right; that are sucking the life out of me. 

It is at this point of exhaustion and lack of sleep, lack of answers, and wanting to know what God was thinking when He gave a once drunk, with a HOT temper, two children that would need more love and patience than I can sometimes give.

It is then . . . . . in those weak moments that I become jealous, envious, and yes, sometimes angry over what other have.

No, I am not talking about financially here people.  I am FINALLY at peace with the fact that we are poor.  I am at peace with the fact that we are in a house . . . . no, a home, that is falling apart.  I am at peace with the fact that we have one beautiful car covered in white chipped paint and the beautiful color of . . . . hmmmm, what's that called, rustic red?!  Ha!  I am at peace with the fact that we do not go on vacations, that we do not buy just because.  I am at peace and FINALLY ok with the fact that when my friends are out getting pedicures and their nails done that I am scrubbing mud clumps out my son's fingernails, I am at peace and THANKFUL for hand me down furniture and clothing, and I am at peace with ALL of that because my God has provided again, and again, and again for us . . . He has been faithful above and beyond in meeting the needs of many needs, and EVEN some of those wants we have!   Because of seeing the hand of God so many times in these areas of provisions, I know beyond a shadow of doubt, my God has my family's back . . . .   For THAT I give Him praise!

The jealousy and envy I speak of, that rages in me is one that is so shameful that I hate to even admit.

It's the jealousy of "normal" kids.

Now, before I go on, don't tell me what normal is.  Ok.  I've heard it all before.  I know there are many levels of normality out there.  I also know there are families that have it a lot worse than we do; so I try, in my chaos of a life to be thankful . . . I really do.

The normality I am talking about wanting is a child that can sit still for more than 3 minutes.  A child that doesn't punch and scream and yell at the rest of the family cause he can't figure out what is going on in his brain.  A child that switches from rage to tears in a heart beat when he realizes he just hit his momma, or bit her, or pulls his sister's hair out, or runs screaming from one end of the house to the other without any control because he heard something; or runs out the house screaming bloody murder like he is being beaten and genuinely fearful of his life . . .  Or a child that doesn't wake up screaming and crying because she itches all over, or seams in her pants and shirts don't bother her, and cries for four hours because she can't make just one letter perfect, so the erases, and re-erases, and re-erases over and over trying to form that one. perfect. letter.  Or the child that doesn't have to not only have tags cut out, but even the tagless clothing items don't bother them because even the tagless items still itch because those stupid black letters are rough.  Or a child that isn't afraid to take showers because she can't get dry afterwards and that doesn't cry and try for hours to get dry when they already are.  Or what about a child that is afraid to go pee because she can't get the wet feeling to go away and holds it for 12 hours a day until her stomach hurts.

Those, and many more other reasons, are why I am sincerely struggling and weary this morning.

I know, I know, I know, God has a plan.

I know that in my weakness He is my strength (trust me, He is the one doing ALL the carrying right now). 

I know His grace is sufficient. 

I know God uses cracked vessels (and I definitely have lots of cracks, lumps, and stretches too!).

I know God has a plan. 

I know all the scriptures; I know these things.

But still, even loving my children with all this momma's heart, I find myself wishing for just a glimpse of normality. 

And then, in that same wish for a glimpse of normality, I find myself fearful of how that prayer would be answered; and I try to once again, be grateful for what I have been given.

If you are reading this, your prayers are needed for us today.

Our youngest has a doctor appointment this morning to check for a bladder infection from holding her urine so long and to check into occupational therapy for her.

For the days Christopher has good days, I am thankful; as many of my Kaitlyn's have been horrifying.  When they both are having bad days, it is more draining that words can even explain.

I thank you for your intercession on our family's behalf.  At times, it is the only comfort we have.

In my prayer journal this morning I wrote, "Hear my cries, Lord.  Strengthen and encourage me this day.  I need to see Your hand.  I love you and trust you.  Amen."

Surreal

It's really been an odd week; a good week, a bad week (I am referring to my Friday food week),and an odd week. Kinda surreal; yet solemn. Like I'm disconnected and without emotion; but everything is fine . . . so why?

I don't know.  What I do know is I have eaten, gorged, eaten, gorged, celebrated (by eating) . . need I go on?  NOT been a good week on discipline and focus.

Maybe it is just exhaustion from sharing my testimony at Nothing Lost Outreach on Sunday and knowing full well the spiritual battle that took place that day. It was amazing but freaky . . . but so cool to see the Hand of God!  During the middle of my testimony, one of the men started shouting and causing a distraction.  There was noone around him, so I don't know what happened . . . yes, I do.  It was satan.  He was trying to get my gander!  BUT IT DIDN'T WORK!  As the man was being escorted out, I looked at a friend that was there, we both whispered, "it's ok" to each other simultaneously.  Moments later the room broke out in applause and we glorified God!  Whew!  Covered in awe-bumps right now!

Maybe it is the joy of seeing my daughter happy and in a good, solid relationship . . . and now engaged!   ENGAGED!  I've been praying for her spouse since she was twelve years old when I learned the importance of praying for our children.  My prayer was that God would bring the best the best that He had for her.  He did good.  Her FIANCE' is currently serving in the United States Marine Corps.  He is being stationed to California.  Please pray for him.  Pray for Kayla too.  Schooling is so important; but with her heart torn in the separation; she is just having a tough time.

Maybe it was the news that Christopher's psychiatrist has diagnosed him with encephalopathy with mood disorder and while he does have Asperger's, OCD/Sensory, Anxiety Disorders, based on the DSM manual, if a person/child has a diagnosis of encephalopathy, then it takes precedence over all other diagnosis'. How does this affect Christopher, I have no clue. The psychiatrist described it at a form of brain damage.  How did he get it?  Have no clue.  The thought is it's a birth defect, maybe heredity, who knows.  It would explain; however, why the medications we have tried and changed over and over don't work for long, or at all. But,what I do know, as I have said before, is I don't know God's plan, but I trust it. He created Christopher, and as much as I love him, He loves him even more.

Maybe it is the fact my youngest daughter is so nervous she chews on her hands and has pulled all the skin off her hands.

Maybe it's the fact that God showed Himself faithful yet again not only giving me confirmation in an area, BUT, He also provided! 

Let me explain in that He may be glorified! 

After receiving the diagnosis for Christopher, and being told there is no treatment; I began praying.  I began praying that if God wanted me to have Christopher seen an alternative medicine specialist, that He would confirm it..  I have been praying about a person I heard about named Dr. Jimmie Hill in Pace, FL.  He does Iridology.  I know what you are thinking; but here is the deal.  Nothing else is really working.  So why not?  What else do we have to lose?  (It has also worked out to have Christopher seen by a friend that do biofeedback studies of the brain; not based on the blood pressure and breathing, but reading the brain!  That is another story . . . so I'll move on.)  Well, what has kept me from pursuing it is money.  Alternative Medicine Specialist are not covered by insurance. Now follow me here . . .   Out of the blue, I received an email from a friend that new about Christopher's change in diagnosis and issues.  She told how her daughter had been ill and the doctor's couldn't figure out what was going on, so she went to see "Dr. Hill"in Pace to have her daughter's eyes read!  She was my confirmation to take Christopher!  BUT!  Here is the even COOLER thing!  That same morning, before even getting the email about Dr. Hill from a friend; I received a notification that we had made a mistake on our FAFSA Pell Grant paperwork for Chris and Kayla's schooling.  Even though their school tuition was covered, and because of our unfortunate poverty level, the extra money was put in to our spending account.  No kidding!  Go ahead, SHOUT AND REJOICE!  Guess what else!?!  (YES; there is MORE!)  It is enough to pay the mortgage of the house through Christmas (keeping us in our home through the holiday's ~ hello!  What a blessing THAT is!), pay the property taxes that will be due AND pay for a visit to see Dr. Hill!  Can you say "ONLY GOD CAN GET THE GLORY!"  I even hesitated in sharing this because it's one of those, "what if something breaks and we have to spend that money to fix something; but you know what I know; "My God will supply ALL our needs according to His glorious riches in Christ Jesus!"  Philippians 4:19. 

I am just in awe.

It's surreal.

Its majestic.

All I can do is sigh and bask in His faithfulness.

Glorifying Him . . . . . because I have not walked in victory over my eating :(

Stacey

He has made everything beautiful in it's own time . . . .

Chistopher has had a bad two days, actually a bad two weeks (over-all). Over the last six weeks we have been gradually decreasing Christopher's anxiety medication. The reason for the decrease is because it is known to increase restless legs; and with Christopher's sleeping disorder and restless legs, we needed to make the transition off. He had been on the medication for four years.

We noticed last week everything was making him cry.  Nothing in particular set them off, just tears after tears after tears.  It was manageable, we got through it, but it was exhausting.  It never crossed my mind it could possibly be the medication changes and I still can't say that is what it was. 

As of today, he has been completely off the anxiety medication for two days.

Christopher had a complete melt down this morning which included the emotion, full sensory and violence. He went from hiding under the corner under the table while screaming to running through the house and out the door screaming at the top of his lungs that he hates us and we are idiots. During his rage he yelled at me, "I will stab you!"

These melt downs start and end in the blink of an eye.  This one lasted right at 47 minutes.  Once he came out of the melt down, he allowed me to touch him and hold him in my arms. 

We rocked in the recliner.

As I turned on the television, he saw a rainbow.  I don't know what channel it was on, but scriptures were on the screen.  As I read the scriptures out loud I began praying them over our lives.  When the scriptures stopped a song playing was that sounded like, "glue me together Lord. . . " and then another scripture appeared, it was Ecclesiastes 3:11, "He has made everything beautiful in it's own time." 

How perfect is the timing of such a sweet message.  While I already see my son as beautiful, I know He is working in our life situation to bring about something even better than we can even imagine. 

Where does my hope come from?  My hope, my strength, comes from the Lord ;) 

Continuing to Walk in Victory,

Stacey

God Did Good When He Made Christopher!

My son, my son with so many disorders and "issues,"  the one that gets stared at because he rocks a lot, the one that picks at his bo-bo's cause he is nervous, the one that can't sit still, the one that interupts and goes and goes, that has melt downs and becomes aggressive . . . . that leaves me exhausted day after day, just walked up to me, leaned his head on my left shoulder (the one I am having surgery on), and started whispering.  While he was whispering he was tapping my shoulder.  When I asked him what he was saying, (he ignored me until he was done); he said, "I'm pwaying over you and your shouwder suwgery tomorrow." 

My heart is in awe.  I'm in awe of God giving me a son, that in the midst of a crazy life, pauses to lay his hands on his momma and pray.  I am just speechless. 

Was reminded of Matthew 19:13-15, Then some children were brought to Him so that He might lay His hands on them and pray; and the disciples rebuked them. But Jesus said, “Let the children alone, and do not hinder them from coming to Me; for the kingdom of heaven belongs to such as these.” After laying His hands on them, He departed from there.

God did GOOD when He made Christopher!  I am blessed to be his momma and thankful God chose me to raise such a precious, precious boy.

Thank you Father for your plan.  Thank you that when I don't have the strength to endure You do.  Thank you for allowing me to experience the precious moment of having my six year old son pray over me.  Thank you for showing yourself to me today through my son.  Very special moment Lord, thank you.  I love you, Lord, Amen.

Continuing to Walk in Victory,

Stacey