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Posts Tagged ‘God’

A lot can be said about prayer.  Most prayers are in moments of crisis.  Even non-believers are said to have prayed to God in emergency situations.  Prayer is simply this:  Talking to God.   I do know that God wants us to talk to Him all the time, not just when we are in trouble.  I have been guilty of only praying when I need something. But that doesn’t mean God doesn’t listen. He does. 

You can imagine that this past year I’ve been doing a lot of praying.  It seems like we are always struggling with” Matt” issues.  Most of my prayers went something like this:

 “Please, God….please help Matthew.”

“Please help our family”

“Please help him to have a good day at school.”

“Please help him to sleep through the night.”

“Please help him get through the morning without an outbust.”

“Please help him walk to the school bus without an outburst.”

“Please give us strength to survive the weekend.”

Please give us strength to survive the next hour.”

When times are dark, its normal to feel as though God is at a distance. It’s also normal to feel as though He isn’t even there.  Seeds of doubt are planted, and hope is lost. 

Deep in my heart, I know that hope is not lost. Hope is what gets me up in the morning.  Hope is what gets me to church even though there are many times I don’t feel like going.  Like this last Sunday for example.  Matt had a tough weekend. We were unsuccessful getting the meds down him, he didn’t like what was for breakfast, and he became enraged several times because Alec looked at him weird. I just didn’t feel like going to church.  I didn’t feel like seeing happy families with their happy children walking together happily into the sanctuary. Nice christian attitude of mine, hu?  Truth is, I don’t believe that there is one christian in this whole world who can say they haven’t felt that way once or twice. But after the sermon is over, I always feel better. I am always glad that we came. 

Our pastor’s sermon was about prayer.  It was about praying during all seasons of our lives. Not just the season’s of strife, but also during times when things are going well.  He said “praying should be like breathing”. Yes, it’s that important.  After church, I took inventory of my priorities.  Prayer didn’t land very high on my list of priorities. I just did it when it was convenient for me.  I also realised there was a small part of me that doubted God was even listening.  I mean, if He was, then why hasn’t He answered me by now?  He knows what I want. Why do I have to keep telling Him?  After giving it a lot of thought, I realized how ungrateful that sounded.  Throughout this past Sunday and Monday, I prayed.  I praised God for all the blessings that we have. I prayed for other people, not just me.  I asked for forgiveness for doubting Him and trying to control everything.  And of course I prayed for our family.  When I started praying for Matthew’s outbursts to settle, I felt the doubt creep in.  As if Matthew can go an entire day without freaking out at home.  Yah, right! It’s been almost a month since Matt went a whole day without a meltdown and that was because he was sick! But I prayed anyway. I prayed that Matthew would have peaceful days at home. Yesterday was Tuesday.  Matt did not have one meltdown at home yesterday. Not one. He hasn’t melted down today either! Haven’t heard the day care report yet but he did great at school! He even played with his brother for an hour! I can’t remember the last time that has happened! Some peopel might think this mellow behavior is a result of the new medicine he is on.  I dont’ think so because we’ve had little success getting him to actually ingest the stuff.  The taste is nasty and he gags and spits it up.  Never underestimate the power of prayer!  I know I won’t!

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It’s been over a month since my last post.  I still had the Christmas theme template activated.  It’s nice to finally change that. 

 The last month has been pretty much a blur.  Christmas has come and gone.  We survived 2 weeks of the kids being out of school. But just barely.  Just because Christmas break is over and school is back in session, doesn’t mean that Matthew is ready to immediately fall back into the original routine. His volatile behavior has hit a new peak. Over the past few weeks, it has become crystal clear to me that Matt’s first priority over everything else is to seek control.  Not necessarily in a dogmatic sort of way.  It’s more like he realises our world makes no sense to him so he wants to create his own world and we all better adapt to it….or esle!  Ok, I guess that’s a little dogmatic.  The screaming, throwing, hitting, kicking, and breaking was becoming a daily event.  Some days, it was an hourly event.  Anything and everything would trigger an outburst.  In these past few weeks I have felt anger, fear, desperation, and despair.   “What is going on with  him?”  “Why can’t we help him?”  “What are we doing wrong?” 

John and I have learned very quickly that most of our problem solving with Matthew is aquired through trial and error.  If one thing doesn’t work, try another.  If what worked before isn’t working now, try something new. Seek the advice on what is working for other parents of autistic children. But lately, things had become so intense and difficult with Matt over the past month that we ran out of ideas of what to try. Keep in mind, we were mentally and emotionally drained.  So I finally called his doctor. “How is Matt’s sleeping?”, she asked.  “Poor as usual”, I answered.  “He still wakes up in the middle of the night and he  still can’t sleep past 4am.” 

So, she agreed that the current medicine he has been taking for the past 3 years has lost its effectiveness.   As of 10 days ago, Matt began a new medicine that is an antidepressant. The primary reason for Matt taking it is so that he can sleep better.  It works, Praise God!  Sleeping in untill 6am is just blissful!  He has been less volatile as well. Could this be the answer?  Maybe for now.  But as we all know, life is a rollercoaster. To me it’s like being on a sailboat in the middle of an ocean.  The waters are calm and it’s peaceful.  But I know there will be a storm coming eventually.  I don’t fret about the storm.  It’s going to come whether I freak out or not.  I use that peaceful time to rest up, enjoy my family, and enjoy my life.  I thank God for giving me the calm days and I pray for more of them.  But when the storm hits, I brace myself and know that we are not  going to go through it alone.  Praise God for that!

 

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Remember to count your blessings.

This is something that God is repeatedly telling me on a daily basis.  So many times I find myself thinking. “This just isn’t fair!”  For example, when I get a last-minute phone call to go take the kids to the park and meet up with friends.  Easy thing to do, right? Especially since we live right across the street from the park.  But it’s not easy.  First of all, we only take Matthew to the park when there are very few other kids there.  Or better yet, no kids!  The noise and chaos of many other kids sets Matt off in a tailspin and the end result is me packing my 60lb screaming child and carrying him back home.   If it’s just Alec, then no problem.  But it usually is never just Alec.  So often the answer to the invite is, “No I’m sorry, we can’t make it”.  I hang up the phone and think sadly, ‘This just isn’t fair!’

Another thing I find myself griping about is the beach.  John’s Grandmother owns this beach house right off of Cannon Beach and all members of his side of the family get to stay there whenever they want to get away. For free.  What a gift!  The last time we went there for a weekend with the kids was a disaster. We ended up leaving the very next day.  But before leaving the beach house I read through the beach house journal.  It’s a cute journal that family members write in to document their time at the beach house and the fun things that they did. The rule is that you write about your adventures before you leave. I read through all the other entries from other family members.  They looked like they had so much fun.

I tried to think of what to write.  What fun things did we do?  Hmmmm.  Well, we ate some pizza. That was good.  Matt  knocked over the recliner chair in a rage……not so good. We went to the Seaside local swimming pool….for 10 minutes.  That was kind of good. Matt called the female life guard a boy…..not good. Really, the whole trip was a blurr. Most of the time I stayed in the beach house with Matt while John took Alec to do fun things. Even though John insisted that I take Alec and he stay with Matt, I just told them to go on ahead because I knew Matt would be way worse for John than he was for me.  This just isn’t fair!!

But during these pity-party moments of mine, God’s voice is louder saying, “Count your blessings. How have I blessed you? ”

I go over in my head of the many things I have to be thankful for.  Does it make the pain go away?  No….not right away.   But it does keep me from becoming bitter.  It especially helps me to be thankful. And instead of whining about how unfair it is that we don’t get to enjoy the beach as much other people do, I’m thanking God that we have a beach to go to.  That we have a working car to get us there. That He provides us with the finances so that we can pay for the $10/gallon fuel to get us to the beach.   (Ok, I am exaggerating about the fuel cost but not by much!)

So for Thanksgiving, these are the things that I am thankful for…but there is so much more than what is on this list

HAPPY THANKSGIVING EVERYONE AND GOD BLESS!!!

I am Thankful for

A God who loves and forgives me even when I don’t deserve it. He sacrificed His son for me. For all fo us.

John. My husband. My best friend.

Alec

Matthew

My mom and Dad

My Brother (don’t tell him)

My Grandparents, Aunts, Uncles, Cousins

My in-laws and all their children

My friends, new and old.

Teachers…all teachers. ESPECIALLY my kids Teachers. They are my family

My church

My legs

My health

My dog and cats

Doctors. Many don’t get the credit they deserve.

My neighbors. Who don’t bat an eye at the craziness they see that comes from our home 🙂

Full Sail Amber ale (I’m only human!)

I am thankful for whoever is taking the time to read this. May God bless  you.

Alec and Me. One of our happier moments at the beach

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Ok, God has seen me through this last storm so I can now rest.  Of course, I manged to catch a cold during this time of rest but fighting a cold is a cake walk  in comparison to what our family has gone through these past few months.  Matthew….oh Matthew. Our youngest of two very spirited children.  He has autism.  Of course when you mention that a child has autism, that leaves very little to understand. Autism is a developmental disorder. It’s a huge spectrum.  Think of a line on a graph. There’s anywhere from severe autism to mild which is where you see Asperger Syndrome. Asperger syndrome is also called high-functioning autism.  My son is in the moderate area of the autism spectrum.  He is 7 and he is the most complicating soul I have ever met and I’m crazy about him. His older brother Alec, my other spirited gift from God, is definitely not one to be ignored.  Although he is a ‘typical’ child, he definitely has his moments.  In fact, he is who helped us understand this whole concept of Autism, PDD-NOS, Asperger’s……etc. 

When Alec was just 18 months old, I was very concerned with the fact that he wasn’t speaking.  My good friend’s little girl was practically rattling off sentences. Alec said nothing.  Alec didn’t even point. It was strange. But him being my first, I had nobody else to compare him to.  As he was getting close to age 2, (I was pregnant again at the time) I became concerned that he wasn’t hearing well. He wouldn’t understand any of my directions.  So I made a phone call to our local Early Intervention.  So begins the adventure of our lifetime:  

Alec was just 2 years old and my hope for EI was to get him to see their Speech Pathologist since he didn’t have any…. well….speech. I seriously thought that a few session with the speech path would help him catch up.  But oddly enough, they wanted to send a “family consultant” out to our home to interview us and observe Alec instead.  That was fine.  The consultant was very nice.  It was also agreed that, yes, Alec needed speech therapy. A month went by and Matthew was born.  My sweet little baby who never cried except for when he was hungry or needed a diaper change.  But Alec, was going into toddler stage. Instead of talking though, he did a lot of screaming, and throwing, and head-butting I recall.  One day an occupational therapist from EI decides to give me a call. I didn’t even know what an occupational therapist (ot) was or what he did but he was very nice, just the same.  The one strange thing about him though was that he would ask me all sorts of questions about Alec….as if he had met him already.   “Does your son scream a lot?”  he asked.  “Yes”, I answered.  “Does he cover his ears all the time?” he asked. “Yes again.” Then he asked, “Does he meltdown in the grocery store?”  “Does he like spinning things such as fans, wheel,….etc. ”  Wow, I thought.  How does this guy know all this?  The OT explained Sensory Integration in kids. It was complicating but it did make sense.  Alec could not filter certain things out causing him to have difficulties processing things in his brain. No wonder the kid was throwing tantrums.  Normal sights and sounds in the store…..well I can just drowned them out. But poor Alec, it was like being stuck on the tilt-a-whirl for 30 minutes straight.  So now we have speech disorder and sensory disorder. Sure with some speech and OT  he will be as good as new…..right? 

Looking back I realised that EI was priming us for the fact that Alec was on the autism spectrum. They didn’t come right out and tell us and for good reason too.  It was a few months before they brought up the “A” word.  Our reaction was denile and anger and we were determined to prove otherwise.  Even the Autism Specialist identified him as being on the spectrum.  Our last stop on our lets-prove-them-all-wrong tour was a trip to OHSU where we scheduled an all-day evaluation clinic for him. Then we could  find out that this kid is NORMAL, but with a few quirks. I remember the trip out there was excruciating. John had to exit the freeway 4 times to find me a restroom, I was so nervous.  Well the clinic was not at all intimidating. At the very end of his long evaluation (by several other experts) came the final results.  “Your son does display autistic-like behaviors. But overall, they are so mild that he barely fits on the spectrum. It’s like he’s a typical child with a sprinkling of autism, he could very well outgrow many of these symptoms and not be on the spectrum a year from now, but that’s not a guarantee.”   My reaction:  “I’ll take it!”  John’s reaction. “I spent thousands of dollars to hear that?!” 

But I have to say, a year later, along with therapies and a gluten and casein free diet, doctors agreed that Alec no longer fit on the autism spectrum. Of course there were some characteristics still present but not enough to meet the “criteria” to be diagnosed wtih autism spectrum disorder.  PRAISE THE LORD!!!  Almost all the books you read on autsim so far say you can’t be cured.  But I felt that the fact Alec was so mild, you CAN outgrow some of this stuff.  So when Alec turned 4, he was already on the fast track to being a “normal” kid. He still had issues but much milder than we were anticipating.  By this time, Matthew was almost 2.  Not talking, not pointing,  not understanding simple diretion……here we go again.

…….

Ok, where was I?  Oh ya.  The year 2004 was quickly approaching and John and I were on cloud nine with Alec’s incredible improvement in his language skills.  The rate in daily tantrum throwing dropped 80%!!  The rate of my tantrum throwing dropped 70%…..I mean, I still had John to tolerate (hehe).  Ok, dumb joke. Those who know me well know that I seldom throw tantrums.  In fact I have always been pretty good at putting on the I’m-a-good-mom-who-has-incredible-self-control show.  Note that I said “show”  The stress I endured had other ways of manifesting itself.  I will give it to you in three words, Irritable Bowel Syndrome! Oh ya, 2 more words for you: Acid Reflux.  And let’s not forget Sleep Disorder. 

So last I left off, Alec is doing great and Matthew is our new concern.  What were the odds having two kids with the same issues?? I didn’t realize at the time that the odds of having more than one child with autism was relatively high.  But this time, John and I were better prepared for the things that lied ahead. The evaluations, the dr visits, the therapies  and the mountains on top of mountains of surveys to fill out! Never ever ending. And keep in mind, Alec was still receiving therapy as well.  We held high hopes though that Matt’s outcome would be the same as Alec’s.  But when Matt was approaching age 4, we had to admit this was not a reality. Matt was barely talking yet.  If anything, he was just hitting and screaming.  His tantrums became so bad that I couldn’t even get him to his OT appointments because he would freak out in the car and undo his seat belt. On the freeway!   Taking him to the grocery store and reseraunts was out of the question too.  You parents know what I mean!   Now I don’t want paint him as this violent, screaming maniac though. He isn’t. He actually is very intelligent.  He has a very sensitive and sweet side.  Many kids with autism lack empathy.  That part in their brain that acknowledges the pain of others just simply isn’t there for many of these kids. Matt does have that.  He cares. Sometimes he is so sensitive to other people’s pain, that another person crying can cause him to have a meltdown. Once he saw me crying and it was so hard for him to see that he tried poking my eyes to make it stop. Kind of like kinking a hose.  So then that made me laugh…which wasn’t good because then he thought poking me in the eyes brought me happiness. 

So now I am fast-forwarding to today.  There is so much in between but that would take an eternity for me to write.  Alec is now a “typical” 3rd grader at a wonderful school and he no longer needs the speech and occupational therapies.   Ok, I call him “typical” but lets be very clear….this kid is could potentially rule the country..and I don’t necessarily mean that in a good way.

Matthew is attending a special ed school with teachers who love him as much as we do! God has really blessed our family when it comes to our kids and their education.  Our hopes for Matt though is that he could be mainstreamed at least an hour a day into a regular first grace class. He would need his assistant. It hasn’t happened yet this year.  Matthew has had a very very hard year. He has these times where he spikes in language and the growth is amazing.   And then there are times where impulse control takes a nose-dive.  These roller-coasters never come to a complete stop and lately the storms have just been rolling in one after another. 

Matt is currently on a waiting list to see a team of doctors at OHSU’s Child Development program.  It’s an all-day clinic and very thorough.  This is the same clinic that diagnosed Alec with his “Sprinkling of Autism”.  I feel they were right on with him.  Maybe we can get a more intense evaluation with Matt.  See how we can help him with his behavior problems. It’s become more difficult as well as desperate lately since he is now a 60lb 7 yr-old and I am just a 95lb 5ft tall 34-year-old. When this kid blows..he blows. Things get broken and I fear him doing serious harm to himself or one of us. 

Two weeks ago, the behavior issues hit an all high peak.  He melted down between 4-8 times a day and up to 12 times a day on weekends. These meltdown aren’t  your typical throw-your-self-on-the-ground-and-kick-and-scream tantrums.  These were “I-want-to-kill-you but I am going to destroy everything that isn’t nailed down first!!”  Yes he does say “I want to kill you!”  And I wanted this kid to talk more??

By now, you are probably horrified. “How could this family let this kid get so out of control?!  They can’t blame it all on Autism!”  Well first of all, those who know us and Matthew and who have seen what we deal with first hand, would most likely be coming to our defense.  Along with other parents with autistic children.  God has given me the gift of patience and self-control.  We are still trying to figure out what God did with Matthew’s but we are hoping that when God finds it, He will ship it Next Day Air.  (Ok another stupid joke, sorry)

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