Autism Awareness and the Gospel

Joshua is on the far right of the picture

Once again, our family is doing everything we can to raise awareness of Autism in light of April being Autism Awareness Month.  April 2 is Wold Autism Awareness Day where many buildings and people light it up blue.  We participate in these activities in honor of our precious son Joshua (8 years old) who has Autism.  He has Pervasive Developmental Disorder (PDD-NOS), which is a moderately-functioning form of Autism.  A year ago, his diagnosis was changed from Asperger's Syndrome (high-functioning Autism) to PDD because of concurrent mental health issues he now struggles with which decreases his functionality.  If you are not familiar with what Autism is, please see the description at the end of this post.

I have been very burdened to pull the Gospel into Autism Awareness.  Too often, we look at the deficits those affected by Autism have rather than seeing them for who God made them to be.  God has made each person PERFECTLY - He does not make mistakes!  If there is any doubt, read these verses:

"For you formed my inward parts; you knitted me together in my mother's womb." (Psalm 139:13-14a,ESV)  

"Then the LORD said to him [Moses], 'Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?'"     (Exodus 4:11, ESV) 

"...bring my sons from afar and my daughters from the end of the earth, everyone who is called by my name, whom I created for my glory, whom I formed and made." (Isaiah 43:6b-7, ESV)

God made my son and others with Autism exactly the way He had designed and intended.  Josh's Autism is not a mistake.  It is God's design to show the glory of God in a lost and broken world. Joshua is VALUABLE.  What some may see as a weakness, God deems IMPORTANT.

"Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows." (Matthew 10:29-31, ESV)

"On the contrary, the parts of the body that seem to be weaker are indispensable..." (1 Corinthians 12:22b, ESV)

"But he [the Lord] said to me [Paul], 'My grace is sufficient for you, for my power is made perfect in weakness.'" (2 Corinthians 12:9a, ESV)

Joshua is NOT Autistic!  He has Autism!  He is not defined by his developmental disorder!  It is simply a characteristic that God placed in Josh's life to proclaim God's glory!  Joshua is an image-bearer of Christ, a child of the King.  His sins have been forgiven and washed clean by the blood of Jesus Christ, and by God's grace through faith, Joshua has an eternal home waiting for him in God's eternal presence where Joshua will some day have a perfect body without any limitations where he can continue to glorify God for all of eternity!

God has some incredibly big plans for this young man!  We feel overwhelmed yet honored at the task God has equipped and entrusted us with in raising this child up in the nurture and admonition of the Lord for God's honor and glory!

"For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope." (Jeremiah 29:11, ESV)

The next time you hear about Autism or see a person with Autism, don't forget to look at them through the lens of the Gospel!  Praise God for His handiwork!

Autism or Autism Spectrum Disorder are the umbrella terms for a range of developmental disorders that cause difficulty with social interaction, verbal and non-verbal communication, and repetitive behaviors and often, many other struggles as well as some special gifts.  These difficulties present in varying degrees in different people.  I heard the saying once, "If you have seen 1 child with Autism, you have seen 1 child with Autism."  That statement is so true!  Each individual with Autism is uniquely themselves with their strengths and weaknesses.  The disorders under the spectrum classification of Autism from lowest functioning to highest functioning are:  Autistic disorder, Rett Syndrome, Childhood Disintegrative Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Asperger's Syndrome.  For further information, check out the Autism Speaks website or see my previous blog posts linked below.

As of last year, 1 in 88 children in the United States have Autism making it an epidemic.  It is our responsibility, especially as Christians, to raise awareness and help these children and adults alike know how important they are and to help them feel accepted as Christ accepts us!

Past blog posts about Autism (most recent to oldest):

Russell World Autism Awareness Day 2012

The Impact of Autism

Lighting it Up Blue for Autism Awareness

Autism Awareness Month

Laughter in the Midst of Sorrow

Once again, I have been silent on the blog front because of the trials that continue to bombard us from every side.  I decided it's about time I write down my thoughts.

After battling for David's new health insurance to cover his antibody blood transfusions, we finally got things settled and calmed down by the end of October.  We saw God work a miracle first-hand in getting the infusion supplies covered only causing David to get his next transfusion 1 day late instead of 4 days late as circumstances had determined.  Another exciting praise is that David remains HEALTHY!  He has been infection-free since the end of August--right before his September 7 surgery.  This means his surgery was successful, and our prayers have been answered.

Our greatest struggle has been with Joshua.  As I mentioned in my last blog post, we and his doctor took him off of one of his medications since it was causing his behaviors to worsen instead of improve.  However, we didn't replace it with a different drug.  Because he struggles with a mood disorder (which the doctors believe is bi-polar, but he's too young for the official diagnosis), he needed to remain on a mood stabilizer but be on one that didn't make his behaviors worse.  After he stopped the problematic drug, he got so much better, and we saw the old Josh for the first time since I had begun my battles with the chronic migraine over a year ago.  However, after a little over a week, his behaviors worsened again as he became emotionally/psychologically unstable.  In November, we put him on a different mood stabilizer, but it was too late.  He went into crisis mode.  In addition to episodes of paranoia, his melt-downs were becoming extremely violent and very long.  Tim was no longer able to control him which was very scary for the safety of our family as well as Josh's.  On November 13, we made the very difficult, heart-wrenching decision to admit Josh into a psych hospital for the second time (he was hospitalized in Feb. 2012).  He was hospitalized for 14 days and did really well on new meds and in the controlled environment.  He came home on the 26th.  He started to struggle with falling asleep in the middle of class as a result of the new medications.  When I called the hospital psychiatrist about it that Thursday,  he told me to give Josh's am dose with his bedtime dose.  The next day, I did not give him his am dose, and he saw his outpatient psychiatrist who told me Josh looked way too sedated and that his dose needed to be decreased by half.  By the afternoon, he fell over asleep while standing up and dancing during a music assembly at school.  The school nurse called me because they couldn't get him to wake up, and it was hard for her to tell he was breathing.  I picked him up and took him to the ER where we found out he was having drug-induced narcolepsy-like symptoms.  He was also wheezing, so the doctor chose to give him a double albuteral nebulizer treatment to slam his system into overdrive and open his airways.  The treatment worked, and his vitals remained stable afterward, so they discharged him.  Since then, after dealing with some severe melt-downs, things have finally seemed to stabilize, and Josh has been doing much better this past week.

Josh's hospitalization was very difficult on us because we felt like failures in being able to help Josh even though we were reassured that we did everything possible to help him and that mood disorders are very difficult to treat.  We missed Josh greatly.  We were allowed to visit him 4 days a week.  Some visits were really discouraging but others were encouraging.  Poor David suffered the most without having his brother, best friend, and play mate with him.  All 3 of us had heavy hearts as we went throughout our days leaning on God's strength and grace to get us through each day, for that was the only way we survived.

We are concerned about David as a result of everything he has witnessed and experienced with Josh and his issues.  Since Josh's hospitalization, David has become very emotional and is having a difficult time focusing.  We thought things would improve when Josh got home, but they have only worsened.  David is usually the first victim of Josh's anger melt-downs.  He has been kicked, punched, bitten, and leveled to the ground.  He has also witnessed his mom and dad getting violently attacked and has heard some awful words coming out of Josh's mouth when he would verbally abuse us.  No 6 year old child should have to experience these things.  He does not like to talk about his feelings, so we are having a hard time understanding what is going on inside of him.

Needless to say, in all of this, our hearts have been extremely heavy and filled with great sorrow.  Many tears have been shed.  Reminding ourselves of God's promises has been the only thing to keep us from being swallowed up in the suffocating darkness of our grief.  God never stopped holding us.  Even in the midst of our deepest sorrow and most difficult days, He provided times of laughter and gladness to help us carry on.

We experienced the truth of Proverbs 17:22 (ESV) firsthand:

"A joyful heart is good medicine,
but a crushed spirit dries up the bones."

 We happened to capture two particular incidents where God gave us laughter in the midst of our sorrow on video, so we share those times with you:

You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
that my glory may sing your praise and not be silent.
O LORD my God, I will give thanks to you forever!
(Psalm 30:11-12 ESV)

I find great hope and comfort as I relate to the Psalmist's words in this wonderful passage (with emphasis added:

I love the LORD, because he has heard
my voice and my pleas for mercy.
Because he inclined his ear to me,
therefore I will call on him as long as I live.
The snares of death encompassed me;
the pangs of Sheol laid hold on me;
I suffered distress and anguish.
Then I called on the name of the LORD:
“O LORD, I pray, deliver my soul!”
Gracious is the LORD, and righteous;
our God is merciful.
The LORD preserves the simple;
when I was brought low, he saved me.
Return, O my soul, to your rest;
for the LORD has dealt bountifully with you.
For you have delivered my soul from death,
my eyes from tears,
my feet from stumbling;
I will walk before the LORD
in the land of the living.
(Psalm 116:1-9 ESV) 

Holding On: When it's all you can do

Our family has had a rough past year and a half, but the last month has been extremely difficult and honestly has brought me to my breaking point.  We came back from our amazing time in Turkey only to be faced with incredible challenges with Joshua, our oldest who has been struggling with his Autism and related mental health issues since February when he had to be hospitalized at that point.  We have had multiple medical consults, behavioral specialist consults, medication adjustments, and meetings with our pastor, but yet things continue to spiral out of hand and we find ourselves desperately at a loss with how to deal with our son.  Our biggest fear is that we are going to lose him because of his behavior/anger issues.

I had a repeat brain MRI the week I returned to the States which showed that my brain lesion has grown slightly and is now lighting up with the contrast dye.  In addition, two new spots are forming in my frontal lobe of my brain.  My neurologist is convinced I have Multiple Sclerosis (MS) even though I don't have any other symptoms of the disease and had a negative lumbar puncture back in November when I was hospitalized.  She is sending me to a MS specialist at Jefferson University Hospital who I will see July 16 to get his take on the whole situation.  Even if it is MS, it does not explain my constant headaches/migraines since Nov. 1 which have prevented me from being pain-free longer than 4-5 hours on a good day.  My neurologist has basically given up on trying to find an explanation for the headaches and is content to keep me on the seizure medicine I have been on since January which causes neuropathy symptoms that I have to live with and that become intolerable if I take a higher dose to try to be pain-free from headache pain.

Then, there's sweet David who has been struggling physically once again the past few months, and has already had 2 serious infections since we returned back to the States.  He was infection-free from November-February, which is the longest stretch of time he has gone in his whole entire life.  Since then, he has had 5 bacterial infections with this last one giving us quite the scare this past week.  He had a really high fever (he went as high as 104.2) for 5 1/2 days straight despite starting an antibiotic the second day for tonsillitis.  He had been put on a prophylactic antibiotic the week before because of his increase of infections lately and had some blood work done to see how his antibody levels were doing.  Even with the prophylactic antibiotic, David came down with the tonsillitis, so his doctor did a throat culture just to make sure it was a bacterial infection.  It was a good thing he did that because when his fever persisted, his doctor sent him to the ER this past Thursday for a full work-up.  While we were in the ER, David's doctor got the throat culture results back showing his infection was from heavy growth of staph aureus (bacteria) which was sensitive to a different type of antibiotic.  So, David was discharged from the ER on the new antibiotic, and finally his fever cycle broke.  However, because he has had tonsillitis 9 times since last Spring, he now has to have a tonsillectomy (his 3rd surgery in his 5 years of life).  We meet with his ENT on Wednesday to schedule the surgery.

Tim is left to be the strong one to hold the rest of us together.  We are thankful he is strong and healthy. 

Needless to say, with everything going on, we have been feeling like we are constantly fighting to keep our heads above water, and we are weakening fast.  I feel like I have entered a spiritual desert.  I know God is with me.  His strength and grace are what carry me through each day and have allowed me to survive the past few weeks.  However, I am getting a first-hand experience of what David must has felt those times he wrote the Psalms that cry out to God asking Him where He is or why He had forsaken him.  Each time, David came around and acknowledged God's presence, but the feelings of God being distant were very real.  I totally understand how that feels.  My heart is hurting so much for my boys and their struggles that I find myself at a total loss for words when it comes to prayer.  I am glad that God knows my heart and my thoughts before I think them or say them.  I am glad that feeling God is distant is just that - a feeling.  I am glad that I know that God has not truly forsaken me and that God is with me each painful step of the way. 

I am reminded of the poem, "Footprints in the Sand" where when only one set of footsteps was seen it was because God was carrying the author.  I am definitely too weak to walk this path any longer on my own.  I am totally relying on God to carry me the rest of the way.  I look forward to the day when He gently lowers me back to the ground placing me and leading me beside the still waters (Psalm 23:2).

The Impact of Autism

Autism, a complex, neuro-developmental disorder of the brain that affects social interaction, communication, and causes repetitive/restrictive behavior/interests is becoming more and more prevalent in today's world yet remains without a cure or known cause.  Now as many as 1 in 88 children are diagnosed with Autism.  In fact, according to a Center for Disease Control study, a new case of Autism is being diagnosed every 20 minutes in the United States.  The facts alone are staggering!  Awareness needs to be spread!  April is Autism Awareness Month, and April 2 is World Autism Awareness Day where the world lights it up Blue for Autism Awareness.  With increased awareness comes greater understanding and more acceptance of those individuals affected by Autism.  The more people know, the more attention is given for funding of studies to discover a cure and a cause.

Awareness is so important.  Our family works hard to raise awareness each year because Autism is very personal to us since our 7 year old son Joshua was diagnosed with Asperger's Syndrome, high-functioning Autism, when he was 4 years old.  Along with raising awareness of Autism in general, we find it is important to raise awareness of the personal aspects of Autism.  Not many people take time to think about the ways Autism truly impacts a family or community.  In fact, many people never move beyond the statistics.

As Christians, we recognize that Autism is a disability as a result of the fall.  It is a normal result of a world that has become abnormal as a direct result of sin.  Autism does not change the fact that Josh was created in God's image.  God did not make a mistake when he formed Joshua in my womb.  God made Joshua just the way he is for his good and for God's glory.  God gave Joshua to us as parents to mold and shape for God's glory and service in His Kingdom.  We teach him the Bible and the things of the Lord just like we do our 5 year old son David.  We have the same expectations for the outcomes in our son's lives.  Our methods may need to be altered from time to time to fit the various needs of Joshua, but in all actuality, isn't that like parenting any set of different children?

There have been times where God has used Josh's lack of social awareness to further the Gospel.  Because Josh is not afraid to say anything to anybody, there have been times where he has boldly proclaimed the Gospel to neighbors where we have been more timid in how we bring up the topic.  By his going straight to the point, he opened the door wide open for us to step right in and have wonderful discussions about our faith.  What a blessing!

However, raising a child with Autism definitely has its struggles.  The past 5 months have been the most difficult months we have faced yet, and they followed the best several months we had experienced with Joshua.  He had been doing so well with the different therapies where he was learning different social skill and self awareness tools.  In fact, he was doing so well, that his wrap around services he had been receiving for the past 2 years (provided him with a mobile therapist who came to the house and school to help him with social skills and a behavior therapist who helped us in the home) were discontinued because he had completed all of his treatment goals.  The problem was that I had become suddenly sick with severe migraines, and my doctors found a lesion on my brain.  With no answers and no relief to my pain, I was not able to answer Josh's questions of when I was going to get better and what was wrong with me.  This caused a great deal of anxiety for him since with Autism, one needs to always feel in control and know what to expect (the unknown is very scary).  This led to Josh's undoing despite our attempt to get him help.

Navigating the difficult road of mental health dealing with inpatient hospitalization, outpatient therapy, family based services, psychiatrists, psychologists, social workers, therapists, and coordinating care with the school therapy team, pediatrician, and developmental pediatrician is enough to warrant another full-time personal assistant job.  I have come to feel as if the phone is a permanent attachment to my head.  Feeling overwhelmed and completely inadequate is becoming a normal feeling.

When Joshua comes home from school each day, there's the constant attempts to keep him calm and prevent him from getting overwhelmed.  Tim and I are constantly doubting our judgment and ability yet having to make fast, pressured decisions, trusting God's wisdom to guide us.  We are struggling to balance the time and energy we are fueling into Josh with the time we need to give to David who is so kind and understanding through all of this.  We pray that God will protect David's sensitive heart and prevent him from becoming bitter.  We fall into bed each night absolutely exhausted by the emotional and physical strain of helping Josh cope with life right now.

It's an overwhelming feeling parenting a child with Autism, especially when things aren't going well.  It's lonely many times.  Too many people who don't understand are quick to judge.  Going to a store can be a very overwhelming experience for an autistic child because it is sensory overload due to the lights, sounds, images, and people.  A melt-down can easily happen, and if it does, too many people are quick to blame the parents for bad parenting or the child for being spoiled.  No one stops to think that the child is in complete sensory overload and can no longer cope with his environment.  Not many people understand how difficult is can be sometimes to parent a child with Autism, so many times, help is not offered.  Getting a break is hard to come by many times.

However, being a Christian parent of a child with Autism, you look into the face of your child and see the image of God and know that it's a blessing to raise your child for God's glory.  It's a comfort to know that you can ask for God's wisdom, and know He promises to give it generously (James 1:5).  You have constant access to God's grace which is always sufficient (II Corinthians 12:9).  We do not need to worry about anything, but we can go to God in prayer and be filled with His peace (Philippians 4:6-7).  We can trust in God for all things (Proverbs 3:5-6).  

Autism brings struggles and blessings.  There are joys and sorrows.  In the end, we are thankful to God for our precious gift - Joshua Caleb Russell!  Our lives will be forever changed because of the blessing of having him in our lives.

A Year in Review

As I reflect on Mary's song in response to God's work in her life, I find that I too can praise God as she has for the work God has done in my own life.

...“My soul magnifies the Lord, and my spirit rejoices in God my Savior,
for he has looked on the humble estate of his servant...
...for he who is mighty has done great things for me, and holy is his name.
And his mercy is for those who fear him from generation to generation.
(Luke 1:46-50 ESV)

This year has been extremely full.  I started off my year successfully completing my nursing boards and getting my RN license.  By April, I had a job through Personal Health Care as a home health nurse for special needs pediatric clients.  It definitely was not the hospital maternity job I wanted, but I have come to love my job and my clients tremendously.

In April, Tim and I took a large leap of faith in our pursuit to fulfill God's call on our lives for service in missions as we went on a Vision Trip to Bulgaria to see if that is where God would have us serve Him full time.  Our time there was amazing, and we could definitely see ourselves fitting into the ministries there and into the missionary family that is already serving there.  However, through many different circumstances God has brought into our lives this year, our pursuit of missions has once again been put on hold.

Sofia, Bulgaria

Joshua, now 7 years old, has had a good year in many ways.  He has come a significant way in his therapies for his Asperger's Syndrome.  He's definitely had some really rough spots this year with increased anxiety and behavior issues causing the addition of a new medication as well as dose adjustments to both to help him with his anxiety, impulse control, and focusing ability.  The most exciting parts of his year were when we passed his food challenges for both eggs and peanuts officially allowing him to be food-allergy free and lightening my purse significantly with not having to carry benadryl and epi-pens all of the time.

Joshua, 7 yrs. old

Josh is having a great year in second grade.  We are thankful for a really great special ed team this year who work really well with Josh and treat us as equal team members keeping us very informed.  Josh met all of his behavior goals for his wraparound services who provided him with a behavior specialist and mobile therapist for help in the home as well as school.

David, now 5 years old, has had another rough year physically with his continued battle with bacterial infections due to his immune dysfunction.  He has stumped doctors in his ability to come down with tonsillitis while on Augmentin to treat another bacterial infection 2 different times!  He managed to squeak by the threat of impending surgery thankfully by his body deciding to not come down with a 6th bout of tonsillitis, for which we are thankful since he has already had to have 2 other surgeries in past years thanks to recurring bacterial infections.  We had to make the most difficult decision regarding his health late this summer when after much testing, no cause could be found for his body's inability to produce enough IgG antibodies which are needed to fight off bacterial infections.  He was given the official diagnosis of Primary Immune Deficiency Disorder, and since after being on a prophylactic antibiotic for over a year, he was still getting infections 1-2 times each month, the only other treatment option was for him to get antibody blood transfusions.  These transfusions, because they are only antibodies in plasma, are from 70+ donors instead of the usual 1 donor for whole blood.  The good thing is that because it is not whole blood, it can undergo more rigid cleansing processes.  However, the risk of a blood-borne transmission is still present.  Since we had exhausted all other options, we  decided to go through with the transfusions, and David started them at the beginning of September.  Thankfully, they are done subcutaneously with the use of a pump and take only an hour each time.  We only have to do them once a week now, so it's not too time consuming.  I am able to do the transfusions so we don't have to rely on a nurse coming to the house or having to take David to a hospital where he will be exposed to more germs.  After a couple of infections before reaching therapeutic antibody levels, David has now been infection free for almost 2 months which is the longest he has gone in his entire life!

David, 5 yrs. old

David started Kindergarten this Fall at West-Mont Christian Academy.  He has a harem of girls who follow him around at school, and he loves it!  We are thankful for his sweet spirit and his desire to make good choices to glorify God.

Tim has been thoroughly enjoying his job as financial adviser, and his job flexibility has been a blessing in light of my recent illness.  Tim has had to step up and do a lot at home to take over many of my responsibilities.  He never complains and is a real encouragement to me.  We praise the Lord for the health and strength with which He has blessed Tim.

Having a migraine for 2 months straight now is definitely taking its toll on my body and my spirit, but God has been faithful, and His grace has been sufficient.  I am still awaiting some test results and have a few more specialist appointments coming up this month.  I just weaned off of my old drug due to problematic side effects and started a new drug, so I've been dealing with a great deal of pain as a result of the weaning process and am hoping that the side effects of this new drug are less severe.  I am learning to rely on God in a deeper way and have experienced His peace on a completely broader level throughout this painful and scary time of learning about my brain lesion and going through so many tests for so many scary diseases.  Thankfully the worst possibilities have been ruled out, but we remain without answers for what it is and what is causing the migraine pain or the neurological symptoms.  Having to wait for God's timing in all of this has been hard and the temptation to despair gets stronger as time passes, but the only thing we can do is wait on the Lord and trust Him to accomplish His will in our lives.

God has taught me so much through all of this.  The promise of Philippians 4:7 has come to mean a lot to me:  "And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus" (ESV).  In our devotions together, Tim and I are continuing to use the Table Talk magazine, and we just finished the discussion on Philippians this month.  I was really encouraged by the reminder the writer of Dec. 23's article gave us in his discussion of Philippians 4:13, "I can do all things through Him who strengthens me:" 

"Our peace amid joy and tribulation is not based on our ability to calmly face life but on the facts that we belong to Christ, that He never lets us go, and that He is faithful to give us the grace to live for Him no matter our circumstances...If we depend on our own power and character in the midst of storms, we will by no means find lasting peace.  But when we trust in Christ and seek to do everything in Him, we can serve Him faithfully.  This does not mean that our concerns do--or even should--go away; rather it means that our concerns no longer define our lives and bind us with worry.  On the contrary, we rest satisfied in the Lord no matter what happens around us."

Our prayer is not only that we not lose site of these valuable truths and our faith remains strong, but we pray that this will be so in the lives of all our families and friends so that they too can relish in God's love and perfect peace!  

Migraine Update

Today marks officially 1 month of having a migraine - definitely not something to brag about!  However, today was also significant in 2 other ways:  I found out that all but one of the Multiple Sclerosis results from my lumbar puncture last Monday are back and all negative (we are thankful for that; the other test result is more sensitive, but my neurosurgeon feels that in light of the others all being negative, there's really nothing to worry about),and I saw a Jefferson University Hospital neurologist (this is significant for this area because apparently, Jefferson has the best reputation when it comes to neurology).  We are thankful I was able to get in to see her, and we were really impressed with her knowledge and ability to look into all aspects of my case and piece everything together. 

I went into the appointment desperately praying that she would know what was wrong with me and know just how to fix things.  That did not happen because she admitted that she does not know for sure what it is, although she has a couple of ideas.  However, I feel she is my best shot of getting to the bottom of things because she is very aggressive in getting a diagnosis and is not content just trying to treat my pain.

So, the plan (as complicated as it's getting - sorry it's so long!):
1.  I need to get a MRA (Magnetic resonance angiography), which is a brain MRI done differently in order to study the arteriole system - One suspicion is that I have an aneurism. -- I was able to schedule this for Tuesday, Dec. 6 at 6:45a.m. (they want me to be the first person in because of my latex allergy).

2. Next week I will also get more blood work done, this time to have a more extensive work-up to make sure I don't have vasculitis. 

3.  I had stopped taking Depakote as of Sunday to see if the tremors I was having would go away or not since I first noticed the tremors when I was taking 1000mg of it.  The tremors have greatly lessened but are still present, and this neurologist thinks it may be another neurological symptom.  To be sure, I am to stay off of the Depakote and allow it to fully get out of my system.  My levels will be checked in my blood when I get my blood work done next week.  If I am clear, I will start on Lamictal, another strong anti-seizure medicine that has been successful in treating migraines.  To avoid drug interactions, I have to have Depakote completely out of my system.  This will mean, that my pain will progressively get worse as the Depakote leaves.  I have already begun to see this effect over the past few days, although the Elavil I am on is helping to prevent my pain from escalating to what it was before being hospitalized.

4.  I need to see a neuro-opthamologist to get my depth perception checked out, because it appears that my depth perception is not right which culminated in an accident this morning when I was walking down the stairs with Josh's uniform.  I thought I had just stepped off the last step, but actually had 2 more steps to go, so I fell down the stairs and sprained my ankle.

5.  The neurologist found weakness and diminished sensation in my left leg/foot which could be a result of the lesion on the right side of my brain.  My neurologist will do 3 more tests on me at my next visit (Dec. 20) to help her get a better picture of what is going on.  One of those 3 tests will be an EEG to make sure there is no connection with the 2 seizures I had back in 1999 when I was diagnosed with neurocardiogenic syncope and had the seizures after I had passed out both times.

As you can see, this neurologist is extremely thorough!  We are praying that within a few weeks time, we may finally have a diagnosis and a plan of action.  We remain confident that no matter what happens, God is in control and is working in through this whole situation for our good and for His glory!

Please continue to keep all of us in your prayers as my own condition weighs heavily on all of us.  Joshua is continuing to have a lot of anxiety over my situation which causes behavior issues at school and home.  As of today, he is going to have some medication adjustments to help him be able to function better in light of his Asperger's Syndrome.  We are also looking for a good child psychologist who might be able to help Joshua process his feelings better.  David is quiet in his reaction to this whole situation, which is easy for us to overlook, so we are trying to be better attentive to his needs.  Since he's becoming the artist of the family, we are trying to encourage him to express his feelings through art.  His health has been stable now for almost a month since his last infection of tonsillitis and pneumonia at the beginning of November.  His antibody transfusions continue to go well, and this week, he finally got to stop his prophylactic antibiotic with the hope that the transfusions have reached a sufficient level in his blood to help his body fight off infection.

We are so thankful that God's grace is sufficient even in these "thorns" in our family's lives.  His strength is what carries us through each day, and His peace keeps our hearts calm as we rest in His care.

We were so thankful that we were able to continue with our Thanksgiving plans and go to my parents' house.  My brother was kind enough to do our family portrait on my parents' property.

 

Complete Submission

Exhaustion, confusion, struggle, doubt, fear, pain, heartache, frustration...all sum up our time since returning from Bulgaria and trying to recover from jet lag.  We haven't even been back a week, and so much has happened that being in Bulgaria seems like a thing of the distant past.  All we can say is that our adversary, the Devil is seriously coming down hard on us attacking our faith and trust in God in a relentless manner.  It all came to a head for me two days ago, and although my faith was greatly shaken, it was not lost.  Through the Godly counsel and wisdom of a friend yesterday, the faint light I saw in my dark world became a beacon that strengthened my resolve to put myself at the feet of Jesus in complete submission to His will for my life.

For the first time in my life, I have come to the realization that my circumstances are completely beyond my own control.  I have no clue how things are going to work out or what my future is going to look like, and there's absolutely nothing I can do about but surrender my will and heart's desires to my omnipotent, sovereign Lord.  However, this is so much easier said than done.  I am getting a glimpse of how Joshua feels in his Asperger's mind when he realizes when a situation is happening and there's nothing he can do to control it.  It's frightening, anxiety provoking, and very unsettling.  I am so thankful that I don't have to deal with these feelings alone but can cast my cares and anxieties on the Lord, for He will answer my prayers and sustain me (Psalm 55:22; Philippians 4:6,7; I Peter 5:7). The struggle is far from over, but by God's grace and strength, I will endure, and I will be victorious.  There's nothing better than being in the very capable arms of God and being at His mercy for direction in my life.  Along with turning to the Bible and prayer for my spiritual battles, I find it helpful for me to write my feelings and the things that I am learning down in the form of poetry.  Just like many of the great Psalms we have were written during David's times of struggles and challenges of faith, most of my poems are an outpouring of my heart's cries to the Lord or the quiet peace and assurance God fills within my spirit.  In my pleas to God yesterday, I wrote this prayer to God:

The Cry of My Heart
By: Christine Russell

O Lord, I cry out to you today
Because my heart is bleeding and my broken spirit is weak--
Life's circumstances have crumbled around me and look bleak.
Through my human eyes, my situation looks dark and drear,
Yet deep within my soul, I find comfort that You are near.
My faith is faltering -- Help my unbelief, I pray.

O Lord, I am floundering to know Your will.
I know in my heart my own plans of what I want to do,
But I know following Your plan will carry me through
The struggles and fears, the bitterness and strife,
The pain and sorrows of this fallen world and life.
My plans I lay at your alter -- Your will I must fulfill.

O Lord, I ask for Your abundant mercy and grace,
The strength to mount up on wings as eagles is what I need.
Help me to acknowledge You in all my ways and straighten my paths I plead.
You alone are the maker and keeper of my soul.
It's in Your peace that I rest even when billows roll.
My body is frail -- Give me the strength to finish this race.

(c) 2011. Christine Russell.

Great Autism Resources Sale

In honor of Autism Awareness Month, Sourcebooks is having a GREAT sale on various autism books, but only for the next 2 weeks.  If you have a family member with autism, or if you know of a friend impacted by autism, or if you are a teacher of children with autism, or if you simply want to know and understand more about autism, TAKE ADVANTAGE of this GREAT SALE!  Also, don't forget to pass the word along!  This sale is too great to pass it by!

I had the chance to read through 3 of the books being sold for this promotion, and I can honestly say, all 3 are fabulous resources.  There are pluses to each one of them.  I'm sure the others listed are great as well.  If you are interested in getting any of the 3 that I read, I will describe each one for you to help you better decide what you want to get, but really, at $2.99 each, you could buy all 3!

The Asperger's Answer Book by Susan Ashley, Ph.D. is a great resource if you are suspecting Asperger's in your child or someone close to you or if you've just recently been given a diagnosis for a child you care for or if you simply want to understand more about Asperger's Syndrome.  It's even a great resource for teachers of kids with Asperger's! I love the way the book is put together.  The 12 chapters all address particular issues related to Asperger's, and at the beginning of each chapter, several related questions are listed to address that particular topic.  It makes the book really easy to use and the information extremely simple to access.  For instance, if I wante4d to understand better my son's sensory issues, I can go right to Chapter 8: Language, Motor Skills, and Sensory Sensitivity on p 167 according to the chapter index.  Once there, I will see the questions and find the question "What is tactile sensitivity?"  That's what I want to know about since my son has issues with clothing and textures of different objects.  I then go straight to that section and begin to read.
In addition to being a vast wealth of information on Asperger's, many questions address how I can help my child with a certain struggle such as "How can I best help my child when he is having an outburst? (Chapter 10).  Entering the world of Autism can be extremely overwhelming with the amount of information out there.  There's also a lot of terminology thrown around that you won't understand at first, and this book defines those really well.  Trying to deal with the struggles of Autism and keep up with all of the therapies can leave a parent with little time to simply read and try to figure Autism out.  This book is a huge time saver because of the way it's organized.  It's a go-to book when my son is struggling to understand emotions or when I need to know how I can help him at school through the IEP process.  If you are just starting to suspect Asperger's in a child, this book starts out explaining what those symptoms look like and how to go about getting a child evaluated.  Many different classes of doctors can give an official diagnosis, so it's also overwhelming about who to go to and what the differences are in the different kinds of doctors out there.  I love the way the book thoroughly explains all of this so you can make an educated decision based on what you think is best for your child.  I HIGHLY recommend this book for anyone who needs/wants to know more about Asperger's.

Children with High-Functioning Autism by Claire E. Hughes-Lynch is also a great book.  I love her style of writing because it is down to earth, engaging, and really easy to read.  She is a Ph.D in special education and gifted education and has a child with high-functioning autism (PDD-NOS) and another one with autistic-like behaviors (Generalized Anxiety Disorder and Tourette's Syndrome).  Needless to say, not only does she have book knowledge about autism, but she has personal parenting experience as well.  She writes this book by using metaphors of going on a journey to different countries to describe caring for "normal" children, those severely intellectually/developmentally challenged, and those who fall in between the two.  It really paints a neat picture in helping to understand how the knowledge and treatment has to be different for each class.  She delves into many of the suspected causes of autism and uses a lot of sources to back up her thoughts and facts.  However, she also freely gives her own opinion while letting you know it's just an opinion and not a proven fact.
I really appreciate her candor and her honesty as she writes the book and gives such appropriate examples from her own experiences with her children or those she has crossed paths with through her life.  She also does a great job explaining the different Autism Spectrum Disorders, which is also a widely confusing topic.  I like the way she covers all of the major topics and really gives good insight into the various areas particularly with treatments, school accommodations (including homeschooling), and the often-neglected issue of siblings and spouses (this is close to my heart since I recognize how easily all of the autistic therapies can suck away every last ounce of strength and energy leaving nothing left for the siblings not to mention your spouse).  This is truly a great resource for a parent of a child with high-functioning autism.

School Success for Kids with Asperger's Syndrome is a very practical book for dealing with school-related issues.  It's a great resource for parents as well as for teachers.  Stephan M. Silverman and Rich Weinfeld do a great job explaining the typical struggles of a child with Asperger's and providing great strategies and tools for dealing with those issues that can be easily put into practice in home and in the school setting.  They also help provide guidance in working the education system and all of the confusing aspects of special education and IEPs.  I also like the fact that they provide information related to college, work, and independent living which is so important to know and understand.  Even though my son is only 6, it helps me to know what to anticipate in the future and how I can be helping him learn these necessary tools to help him be successful in his adult life.  This topic is really being worked on and developed right now in light of the increasing numbers of children being diagnosed with Asperger's as well as other disorders of the autism spectrum.  It's encouraging to know that resources are being put into place to address these issues.

Lighting it Up Blue for Autism Awareness

As I mentioned in my previous post about Autism Awareness Month, World Autism Awareness Day is April 2.  April 1st and 2nd are set apart to kick off Autism Awareness Month of April.  A group of children recorded a song to help encourage people to "light it up blue" to help spread the word.  It was put into a great video that I was so encouraged and touched by.  Watch it here:

We lit our house up blue to honor Joshua and spread the word around.  We've decided to keep our lights blue for the whole month of April in honor of the Autism Awareness theme.  Here are a couple of pictures that we took to show how we lit it up blue.

Front porch (picture taken by Tim)

I decided to get creative and experiment with a puzzle piece which is a symbol for autism.  My husband was so patient with me and held that puzzle piece through so many shots.

Our light out back.  By this time, Tim's arm was cramping from holding the puzzle piece, and my hands were cramping from holding the camera! :-)

 Also, along with the idea of lighting it up blue, people are encouraged to wear blue on April 1st and 2nd.  Our whole family participated (including my mom and sister).  On Saturday (April 2), we went to a Reading Royals Ice Hockey game sporting our blue clothing.  Here are pictures of us:

Autism Awareness Month

Joshua at 3 months old

Joshua at 1 year of age

Today marks the 1st day of Autism Awareness Month where attempts are made to raise awareness of this fastest growing developmental disorder in the world.  In the U.S. 1 in 110 children are diagnosed with an autism spectrum disorder with 1 in 70 boys being diagnosed.  Research is being done to determine the cause.  There is no cure, but intensive early therapies can really improve the quality of life and function.  So, the hope is that if more people are aware of the disorder, they can be alert to the symptoms to help others get an early diagnosis and therefore early treatment.

Just before he turned 2 years old

3 years old

At 4, Joshua started taking violin lessons since music has always been an obsession for him.  However, playing the violin lasted only 1.5 years.  He's now playing the guitar and piano along with any other instrument he can get his hands on.  This was taken in April 2009, when Joshua was diagnosed with Asperger's Syndrome

 Joshua was diagnosed at 4 and began intensive therapies right away.  Now at 6, he has made some incredible progress socially and behaviorally as a result of these therapies.  Several of his therapists over these past two years have made comments about how fast he picks up on the therapies and utilizes them.  In the first year of therapy, his therapist told us that what Josh accomplished in 3 months, many kids can't even come close to accomplishing in 1 year!  We praise the Lord for the brilliant mind He has given Josh and for the eager spirit he has to try the things he's being taught.  He still has a long way to go, especially socially, but each therapy will bring him closer to the potential to live a "fairly normal" adult life that his diagnosing psychologist says is possible for him because of his early diagnosis and treatment.

At 5

April 2nd is World Autism Day.  To commemorate it, people all over the world "Light it up Blue" by wearing blue, using blue lights, hanging blue signs, and wearing blue autism pins and such.  The Empire State Building lights it up blue each year along with other buildings throughout the world.  April 1-2 is used as the kickoff to the month along with the celebration of World Autism Day on the 2nd.  Won't you join the growing number of people who rally together from around the world to rally autism awareness?  Take a look at my Blue Page and browse the sight to learn more about the "Light it up Blue" Campaign as well as information about autism.

Crazy 6 year old so full of life

See my Lighting it up Blue post to see what we did in honor of World Autism Day!

Ministering to those with Special Needs - Part 4

My heart has been so full the past several weeks with a desire to love and minister to those with special needs (as if you couldn’t tell by my series of posts regarding special needs :-) -- <See all posts in this Special Needs 4-Part Series>). The more I dwell on this, the bigger my dreams get.

As serving God in Bulgaria becomes more of a reality, I often think about the children and families there who are affected by autism (I’ve been told that Bulgaria has the highest incidence of autism in all of Eastern Europe). I wonder about how I could reach out and show them the love of Christ. In searching my autism resources online or talking with people, I discover ministries and ways to do just this. I have been told of a man who started an autism school in India touching the lives of so many there, including impacting the president of India himself. I just learned today of a ministry in Indiana that just opened up an orphanage for special needs children in Uganda (http://www.ekisa.org/), where those with special needs are considered “cursed.” I don’t know if I could do anything as grand, but I pray that God could use me in my everyday life at least. I understand the loneliness, the struggles, the disdain and misjudgments of others. I know what it feels like to long to talk to someone who understands me and my child. I pray that God can lead me to people who feel just like me, and through our common connection, I would then have the opportunity to share the Gospel. Without Christ, the hardships of caring for a special needs child can be overwhelming. Many days, it’s only God’s grace that sustains me and brings me to the end of another day or allows me to have the strength and courage to wake up and begin another day. My heart hurts for those who go through life without knowing the comfort of God’s grace that sustains and peace that surpasses all understanding.

These thoughts then lead me to the here and now. In the Pottstown region alone, there are many families affected by autism. I hear story after story from Josh’s behavior specialist. In doing my own research or using the resources given me by the behavior specialist, I have realized that there are not too many connections in our area for parents to commiserate or get kids together for a play date. I have been thinking about how I could reach out to the community wondering if I should start an autism play group or a parents of autistic children support group. Doing something would be better than nothing. I then think about the church and how the church body could be ministering to these families and wonder how to incorporate my own dreams into a ministry outwork of our church. It’s a perfect way to demonstrate the love of Christ.

After all, I overheard one mother talking to another at my son’s special Olympics swim class telling her that she takes her son to particular church just because there is a ministry just for kids like him, and she feels it’s a good outlet for him. What a great way to open the door for the Gospel to be proclaimed! Our denomination has a special needs ministry and is training churches to minister to these special groups of people (http://pcamna.org/specialneeds/index.php). I am so excited about this work and have been in contact with the director multiple times. I am looking forward to meeting her in person this weekend. I pray that other churches will be burdened to take on this ministry to be a blessing in their own communities.

As my mind rapidly swirls in thoughts and dreams regarding the potential to minister, I pray that God would keep my heart open and receptive to the ministry opportunities He brings me daily and that He would burden the hearts of others to love these special children and adults and their families.

Joshua and David enjoy one of the many cool sensory activities at the Special Needs Class at the Spring Valley YMCA.

Ministering to those with Special Needs - Part 3

<See all posts in this Special Needs 4-Part Series>

How to minister to the caregivers of those with special needs:

• Provide a meal during a difficult time or just because - I never realized how exhausting caring for a special needs child can be.  As I said in my previous post, it can be draining!  Many times, after a rough battle with Josh and his anxiety-induced behavior issues, the last thing I want to do is scramble to throw together a last minute dinner.  There have also been times where I really should have taken more time to process an event with Josh to help him better understand what the problem was in a given situation, but having to care for the rest of the family caused me to stop short and lose the great teaching moment.  It's a hard balance.  There have been times when I have been ministered to by dear friends who have provided a meal for various reasons.  Each time, even if I feel awkward in even accepting the meal, I am so grateful for their kindness.  Not having to prepare just one meal makes my life a little easier.  If you know a special needs family, perhaps you should attempt to make a meal for them even this week to be a blessing - just because!  Call them up and tell them you will be bringing by a meal on a specific day unless another day would be better.  If they are anything like me, they will try to decline, but don't back down.  Take the opportunity to tell them that God has laid them on your heart this week, and you want to be a blessing to them in this way.
• Offer to watch/care for the special needs person so that they can get out and run errands or get a much needed sanity break!  Warning:  If you do this, don't complain about petty behaviors to them afterward making them feel guilty for leaving their child with you in the first place!  Accept the challenges that come with the favor and better learn how to pray for these caregivers!  
• Offer to do something special with the siblings of a special needs child.  Oftentimes, the siblings get unintentionally neglected because of all of the time and energy that goes into caring for a special needs child.  Also, sometimes the siblings just feel left out because their special needs sibling gets to do "special & fun" things for special needs kids, and they get left out.
• Offer your services to the caregivers - offer to go pick up groceries, clean the house, do dishes, etc.  These will be a true blessing to the caregivers who often don't have time to stay on top of these duties or not have the energy to do them.
• PRAY!!!!!!!!!  These caregivers need all of the prayer they can get!  Take the time to pray for them on a daily basis that they would have the grace and strength for each day and find ways to care for themselves.  Pray that they would not become weary in well-doing and find joy in their service for the Lord.
  

Caregivers often feel all alone in the world.  Surround them with love and friendship and help them know the comforts of God's love and care!  Build them up and strengthen them!

Ministering to those with Special Needs - Part 2

<See all posts in this Special Needs 4-Part Series>

How can we minister to those with special needs and those who care for them and how can we do it so that they can see the love of Christ?  My mind has been spinning in countless directions thinking about this concept.  I've finally decided I need to organize my thoughts into groups, so here goes nothing!

Reaching those with special needs around me:

• Get to know those with special needs - talk to them, treat them like normal people, let them know through your conversation with them that you are interested in what they have to say and that you care about them as a person.  It is so easy to feel awkward around these people and be at a loss to say.  The temptation to look the other way and keep walking is great.  Put yourself out there and make an effort to stop and be a ministry just like the Good Samaritan did when he saw the beaten man on the street.  Even if you make a fool of yourself, most likely, that special needs person is VERY forgiving and is simply touched you stopped to acknowledge him/her to even realize the errors in your attempt to converse.
• Smile often and give compliments.  Hugs are great too, if appropriate.
• If the special needs child is a child, set up play dates with your children - help your child(ren) to embrace those with special needs and learn that they are the same inside.
• Again, if you are dealing with a child, get on their level and PLAY with them!  Make them feel important and loved.

Thoughts of how this idea can be carried out cross-culturally:

• The need to feel loved and acknowledged is pretty much universal!  The above techniques work for any culture!  Love and compassion is the key!  Jesus realized this and acted it out in the various kinds of people from various cultures that He ministered to during his earthly ministry! 

Next, I will discuss ways to minister to those who care for those with special needs, which I believe is just as important!

Josh and even David love going to the Special Needs Play Class at the Spring Valley YMCA - a great opportunity to play, have fun, get sensory stimulation, and make new friends

Ministering to those with Special Needs - Part 1

<See all posts in this Special Needs 4-Part Series>

Never in a million years did I ever dream of raising a special needs child of my own, but God called me to the amazing task and gave me the gift of Joshua Caleb.  My eyes have been truly open to the challenges parents and caregivers face taking care of a child with special needs.  With as difficult as it has been for me so far, I also recognize that I have it so much easier than most parents who have a special needs child because my child is considered "high-functioning."

On Joshua's 1st Christmas, we put him in one of his gift bags because he was our gift from God for that year.  Little did we know how special of a gift God had really given us.  We can't imagine life without him!

Ever since Joshua was diagnosed with Asperger's Syndrome, an Autism Spectrum disorder, I looked at this neurodevelopmental disorder as a challenge, a difficulty, a thwart to my plans for the mission field.  This diagnosis had a negative connotation in my mind.  However, God opened my eyes to the truth back in November 2010 during the MTW Missions conference when I was talking with a pastor who had led the seminar "Lord, Here am I, But What About my Children" I had just attended.   I was asking him about our specific family issues related to serving as missionaries.  When I told him about Josh's autism diagnosis, he laughed, catching me off-guard.  He then asked if we'd ever be interested in serving as missionaries in Bulgaria (the 3rd person to ask us that very question).  I asked why, and he responded, "Because Bulgaria has the highest incidence of autism in all of Eastern Europe, and they are behind the times in the therapies and services that the U.S. has.  Don't you think that when God called you to be a missionary when you were 11 that God called you knowing He was going to give you an autistic child?  Could it be that God is going to use you in a way He wouldn't have been able to use you otherwise because you have a child with autism?"

Those two questions revolutionized the way I thought.  In that moment, I was convicted of my lack of faith regarding the sovereignty of God (having an autistic child didn't catch God off-guard or thwart His plans) and my negative perspective of Josh's diagnosis.  Asperger's Syndrome is not a negative thing, but it's a GIFT!  God gave me the gift called Joshua for my good and His glory!  It's an honor and privilege to raise this loving child with his difficulties and his joys!  It's also very humbling that God would consider me worthy for the task not to mention call me to minister because of this gift He has blessed me with.

The more I understand and experience first-hand the world of special needs, the more my heart is challenged about ways to minister to this special group and those who love them and care for them.  Caring for these special people is a joy, but is not always easy.  Oftentimes, I find myself physically, emotionally, psychologically, and mentally exhausted, especially when Josh has been really struggling with anxiety issues related to change or the unknown which often leads to lack of focusing and staying on task and behavior issues.  I have gained a lot of insight about the needs of the caregivers of special needs people and now understand better how I can minister to them because of my own experience.  I also know the pains of feeling different and struggling to fit into a world that is very unforgiving because I've witnessed it through my own son's eyes.  These special people need to know the love of God.  God made them special because they are each equippede with special blessings that God has given to them for their good and His glory.  We need to surround them with God's love and enable them to glorify God through their lives and abilities.  I intentionally say "abilities" because what most call "disabilities" (giving a negative connotation) are actually "abilities" in other ways - a blind person can be gifted with acute hearing, a person who can't walk might be gifted with his hands; a child who is socially awkward as in Asperger's can be gifted with an amazing mind, etc).

Check back soon for a follow-up post of ways to minister to special needs individuals as well as their caregivers as I continue to explore ways God has called me to minister to these wonderful people.

One of Joshua's highlights of his week is his Special Olympics Swim Team practice.  He loves swimming, and it is wonderful therapy for him!