Thursday, March 27, 2014

My Struggles and Blessings of Being a Special Needs Parent - Part 3 of 3

This is the conclusion of my 3-part post of my struggles and blessings of being a special needs parents.  Feel free to read part 1 and part 2 if you haven't done so already.

Struggle #6:
I struggle with guilt.  I feel guilty that I'm not doing enough for my children.  I feel guilty that most of my time and energy goes into my children making me feel like I am letting my husband down.  I hate being so exhausted that I have nothing left to give him at the end of the day.  I also feel guilty if and when I take time to care for myself.

Feeling guilty when I do something for myself seems to be the most problematic for me.  With the many therapists coming in and out of our house and the visits with Josh's developmental pediatrician and psychologist, I have heard, "Make sure you take time for yourself.  That's important!" way too often!  However, I rarely heed the advice.  I'm too busy.  Then, when I do take an evening to go out, I don't enjoy myself because I am thinking of all of the housework I could be doing or how I should be helping Tim put the boys to bed.  Often, my mind is my worst enemy.  It is very hard for me to do something for myself.  For my own well-being and that of my family's, this struggle needs significant work.  It's just so hard to find time in our crazy schedules for me to have "me" time.

My husband and I would love to get out more often and enjoy more frequent dates, but duty calls, and because the needs of both boys are complicated, it's not as if is capable of caring for them.  It takes a special and understanding person to know how to meet Josh's needs.  Those kinds of people are hard to come by in our circles, but slowly, we are seeing doors opening in this area.  Now, we need to figure out how to carve out the time to have "us" times.  

Blessing #6:
I am blessed to be used of God to minister to others.  It has been so difficult to go through life feeling the burden to answer God's call in long-term missions when God has seemingly put so many hurdles and obstacles in the way.  There were times when I felt like time was wasting away and I couldn't be serving God.  God has shown me time and time again that He's using me for Kingdom-work in every circumstance He places me.  I don't have to be in a foreign country to be His vessel of ministry.  He gladly uses me in the ordinary details of my everyday life.  More and more, I am amazed by the ways in which I am able to minister to others as a result of the struggles I have faced in my life personally or with Josh or David.  From people I meet in a waiting room, to doctors and therapists, to neighbors and friends, to someone reading my blog...the list could go on for a while.  I am humbled by the knowledge that God chooses to use me in all of my imperfections to be a blessing and ministry to those around me.   

Struggle #7:
I struggle with fears -- fear about whether I am making the right medical decision for my child, fear that I'm not choosing the right consequence for my son's actions, fear about the next bacterial infection, fear of what others will think about me, fear about the future for my sons, fear about whether I am doing enough as a mother or wife, fear about whether I am doing enough for God, fear that I will forget something important in our busy schedule, fear that I am just not good enough for the roles in which I find myself.  I hate the doubts that creep up on me all of the time.  Satan has a way of catching me off guard all too frequently.  On the positive side, I have been driven to trust in God no matter how tough the situation appears.  The more I rely on God to work out the details of my life, it becomes easier to release the fears and cast my burdens and fears on the Lord, for He truly cares for me and will sustain me (Psalm 55:22, I Peter 5:7).

Blessing #7:
I am blessed with peace that passes all understanding.  As a result of facing my fears and difficulties in God's strength and casting my cares on the Lord, I am filled with His perfect peace and rest (Isaiah 26:3, Matthew 11:28-30, John 14:27, Philippians 4:4-7).  Often, I get the question, "How do you manage everything and not get overwhelmed?"  I always answer, "God!" then go on to explain that God gives me His strength and grace to make it through each day and that even in the midst of the scariest of times, God fills me with His peace.  With God, I can truly have peace in the midst of the storm.  My heart can be calm when life's circumstances could fill it with anxiety.  There's no better place to be than resting beside God's quiet waters where even if I find myself in the valley of the shadow of death, I will fear no evil because God is with me filling me with His love and wondrous peace (Psalm 23).

Sunday, March 16, 2014

My Struggles and Blessings of Being a Special Needs Parent - Part 2 of 3

For the first 2 struggles and blessings, see Part 1.  This is the second part of my posts about my struggles and blessings of being a special needs parent.

Struggle #3:
I struggle with self-doubt and helplessness.  I am constantly second-guessing my decisions in parenting, my medical judgment, my ability to be a good wife, and my call in life.  As if parenting isn't hard enough for any given person, the complications of a special needs child, not to mention two, really make things difficult and messy at times.  We have been blessed to work with some great therapists who have been able to guide us in our parenting and choices, particularly in dealing with Josh and understanding what behaviors are simply sin issues, what are a result of his Autism or other mental health diagnoses, when to give consequences, when to take advantage of a teaching moment, when to comfort, when to be firm, etc.  With David, we have had to make many hard decisions, particularly with what surgeries to have him undergo, what immune-enhancing methods to try, and the biggest - having weekly antibody transfusions in which the antibodies I put into his subcutaneous tissue through a pump come from 70+ donors in which he could react to any of the 70 different blood types going into his system.  Then, there's knowing how to address the trauma David has suffered witnessing and experiencing some horrible violence that no child should see or experience when his brother goes into a violent rage.  For both boys, we have had to make tough decisions about medicines, such as David having to be on antibiotics prophylactically for 6 years, or the harsh psych drugs with significant side effects to help make life easier and more balanced for Josh.  These decisions are weighty enough to make me doubt myself.  Add onto those, the negative feedback and judgments of others around me!

I feel utterly helpless when I watch my boys suffer.  I feel helpless watching David succumb to yet another bacterial infection, wondering if he is going to live through it and not being able to take the pain and suffering from him.  I feel helpless watching Josh swing from the extreme moods of bipolar and feel even worse when Josh is aware of the swings and is able to voice how out of control he feels of his own body.  When he cries to God with tears running down his face asking God why he has to be this way, I feel my heart being squeezed to the point of bursting.  I have the power of prayer, but I often forget that it is a power I have, but knowing that God can choose to answer my prayer "yes" or "no" also renders me helpless as I realize that God holds my boys in His hands.  Being helpless in that sense is a good thing because there is no better place for my boys to be, but yet the human side of me wants to do something tangible to ease their pain, suffering, and misery.

Blessing #3:
I am blessed with abounding joy when I see progress or success in my boys.  It could be something as simple as Josh using good eye contact, David doing well on a test in school, hearing Josh appropriately ask an adult in passing how his week was, counting the weeks that go by without another bacterial infection, getting a good behavior report from Josh's teacher or school TSS (therapeutic support staff), seeing a heart of gold in a child who has suffered so much, enjoying stability in Josh's mood for an extended period of time, watching the boys grow and develop, seeing them increase in their spiritual understanding and relationship with God, hearing them play together nicely, watching Josh use a coping skill without prompting, hearing David improve in his violin playing, hearing Josh appropriately use an idiom (because he is very literal, these are hard for him to understand unless someone explains them to him).  I love praising my boys for their accomplishments.  Seeing the joy on their faces when they know they have done well or things are going well fills my heart with sheer gladness.  Sometimes progress for Josh with his Autism and mental health struggles can be very slow or nonexistent, so we gladly rejoice at the small accomplishments he makes that would ordinarily be overlooked in a neurotypical child.  God helps me to find joy in the small things, and that joy helps to sustain me and carry me through the tough times.

Struggle #4:
I struggle with worrying about what other people think of me.  This struggle has been a difficult one to overcome.  I have made significant progress but still have a long way to go in conquering this struggle.

When Josh was younger, he was incapable of using coping skills to help him get through a change of plans, something unexpected, or sensory overload.  As a result, he had countless meltdowns daily.  One of the hardest things to deal with were his fits in grocery stores when he was in full sensory overload.  People would look at me in judgmental ways or actually say things to me or about me in my hearing about how I had no control over my child, I had spoiled my child rotten, I needed to teach my child self-control, or I needed to give my child a good spanking.  These looks and comments pierced my soul.  It didn't take long for me to stop taking Josh to the grocery store as a result.  I still to this day avoid having to bring him into a store if at all possible.

It's been even more painful to suffer people's judgments and comments when it comes from family or church family.  I'm sure everyone means well, but they speak out of ignorance if they have never raised a child with Autism.  Seeing people get frustrated with Josh's behaviors or having people only come to us to complain about Josh's behaviors and never hearing positive things about him can be extremely draining, infuriating, and humiliating.  Even though I know that I am doing all that I can for my son following the best recommendations for addressing negative and positive behaviors and using the wisdom from God that I pray for daily, I can't help but let those comments get to me.  They used to eat away at me.  Thankfully, our family has come to a much greater understanding and our church family is starting to come around.  I am also getting better about just bringing these frustrations to the Lord and leaving them in His hands rather than internalizing them.

I hate it when I feel embarrassed by my son.  It is so selfish of me to be worrying about what others around me are thinking rather than doing all that I can to help my son through his meltdown.  I am working hard and improving in this area as well, but that selfishness still tries to make an appearance each time I deal with a meltdown in public.

Blessing #4:
I am blessed to see answered prayers in abundance as well as be on the receiving end of the prayers of God's saints.  Because our boys have special needs, we have a lot to pray about.  We have a wonderful network of friends and family who pray faithfully for us and who can be called upon to pray for an urgent need.  There is nothing more comforting than knowing saints from all around the world are lifting our family in prayer.

Prayer is powerful, and we have seen some amazing ways in which God has answered our prayers and the prayers prayed on our behalf.  Whether it be having a full night's sleep, a good behavior day, a good report from the doctor, a hospitalization avoided, a medicine that worked, the success of a new therapy, a meal provided by a friend, help with housework, help with childcare, an infection cleared, a successful surgery, etc., God has answered prayer!

We have also seen God move the hearts of friends to pray for us when they have no idea how to specifically pray.  In the past six months, we have had this happen twice.  God has even used someone in another part of the world to do this.  Because of their burden to pray, these friends emailed us to check see how things were going only to find out we were in the midst of a major struggle and that they were unknowingly praying us through it because they were following God's leading.  We are truly blessed to have access to God through prayer, to be prayed for, and to witness God's answers in the lives of our family.  

Struggle #5:
I struggle with selfish thoughts.  This is a hard one to admit to, but I hope that by exposing my sinful heart, I will have renewed determination to continue to work on this struggle.  I have a crazy and hectic life.  My days are filled with phone calls and emails from doctors, therapists, and schools; juggling doctor and therapy appointments; and trying to prevent meltdowns.  That is on top of the normal responsibilities I have in keeping up with housework, laundry, cooking meals, grocery shopping, helping the boys with school work and music lessons, being a wife, working part time...My life is exhausting!  Sometimes, I just want to have a "boring life" and get frustrated that I can't have it.  I question why life has to be so difficult and become discontent with the life God has chosen for me.  Far too often, I find myself begrudgingly processing a negative behavior with Josh or talking him down off the cliff or from a rage.  I often roll my eyes or wish I didn't have to oblige Josh in scratching his back to help him get the sensory input he needs in order to slow his engine down, especially when I am so tired from a long day.  I get frustrated that I have to plan out our weekends to ensure I have time to do David's transfusions.  I hate that we can't be spontaneous since Josh needs to know ahead of time what to expect.  At times, I get bitter that I never get to do something that I want to do or do something for me because I'm too busy doing things for everyone else.  It is so easy to fall into the pattern of feeling sorry for myself, so it's a daily battle to keep my eyes off myself and my circumstances and look to Jesus, the author and finisher of my faith (Hebrews 12:2).

Blessing #5:
I am blessed with growing faith and sanctification.  My life as a special needs parent has been full of very hard and difficult trials.  My faith has been stretched and strengthened in ways that still amaze me in looking back at how far I have come.  I am thankful for the fires that have helped me come forth as gold (Job 23:10).  I wouldn't be who I am today without these countless trials.  Even though I wouldn't have chosen to have them, I am grateful that I did.  My relationship with God is so much closer and stronger because of the countless times I have been brought to my knees, utterly helpless and having to depend completely on God to carry me through.

God has used the good and bad times to grow in my sanctification.  I can't begin to count the times that God has revealed a sin or struggle in my own life through my addressing behavior issues with Josh or David.  Also, God has had to force me to rely on Him instead of myself by giving me trials that are impossible for me to overcome without Him.  This has been a hard thing to deal with because I am independent, strong, a fighter, and I don't give up.  I like to have control, but God has had to show me that even when I think I am in control, I'm really not because He is.  I am finding it easier to rest in Him and turn to Him for strength for each day.  Each day, through the good and bad, God is making me more like Christ.  He is chipping away at the old man and revealing the new.  I am grateful for the way God continues to do good work in my life, but I do long for completion at the day of Jesus Christ (Philippians 1:6).

Sunday, March 9, 2014

My Struggles and Blessings of Being a Special Needs Parent - Part 1 of 3

I recently read a blog post by a mother of a special needs child called 7 Things You Don't Know about a Special Needs Parent that got me thinking about my own experience of being a parent to 2 boys with special needs and how that has revealed struggles I have in my own life as well as blessings I enjoy as a result.  I can't speak for other parents of special needs, but I am sure we all struggle with similar things and face similar blessings.  I thought I'd share my struggles and blessings juxtaposed with each other in a 3-part series of blog posts.

Struggle #1:
I struggle with exhaustion - physical, mental, emotional, and psychological exhaustion - nearly every day.  With balancing and keeping schedule of doctor's appointments, therapist visits, weekly transfusions, meetings with the school, using my time and energy to advocate for my son ensuring he gets the best treatments/services possible, defending or explaining my son's behavior to an upset adult or child, having to to check on a child throughout the night who turns blue, hospital visits, seeing progress, dealing with setbacks -- the list could go on.

I feel like I am on an unending roller coaster completely in the dark never knowing where the next turn will be.  Often, the whiplash from it all takes my breath away.  I am thankful that I don't have to check on David in his sleep to make sure he's still breathing anymore, but the unending battles with his immune disorder and continued struggles with his reflux still can be draining.  Between both boys, I administer 21 medicines in a day, and that doesn't include David's weekly antibody transfusions or medicines they need once in a while.  My days are filled with being a nurse to my own kids, trying to avoid meltdowns, phone calls to doctors or therapists (sometimes multiple in a given day), emailing teachers, coordinating my schedule with my husband's schedule, making sure we have food to eat and clean clothes to wear, eating lunch if I am lucky, and, oh yeah, just trying to survive another day.

Blessing #1:
I am blessed with a superabundance of God's strength and grace.  God promises that His grace is sufficient for me (2 Corinthians 12:9) and that He gives His strength in measure (Psalm 68:35, Isaiah 40:29).  My days are so full of busyness and stress that I need extra grace and strength compared to other mothers just to get through my day.  I have never been lacking even when my circumstances make me feel as if I will most certainly drown.  God has never failed me.  When I have been too weak to walk, He has carried me in His capable arms.  I would not be here today if it were not for God's strength and grace.

Struggle #2:
I struggle with loneliness.  It is so easy to feel isolated as a parent of a special needs child.  You don't get to do the "normal things" other parents do.  You often feel trapped as a prisoner in your own home.  If you do get out, it's to take a child to see a specialist or a therapist or go to the school because there is a problem.  I have turned down many opportunities to socialize because I was afraid to expose my immune deficient child to unnecessary germs or I didn't want to chance a meltdown by my son with Autism.  It's easier to hide, but then loneliness is the result.  Even amid people, I feel lonely because I know people really don't understand, and I find it hard to share my struggles and burdens because it's hard for someone who has never raised a child with special needs to truly understand the hardships.  When my son first got his Autism diagnosis, Autism still wasn't very well-known, although it was on the rise.  I had to explain what Autism was and try to explain why my son was acting the way he was even though he looked "normal."  I didn't know anyone else personally who had a child with Autism.  Now, with Autism at epidemic proportions in the U.S., I have several friends who truly understand my struggles which has helped fill the loneliness void to an extent.

Blessing #2:
I am blessed with countless evidences of God's presence in my family's life as He works in each of our lives.  God promises that He will never leave me or forsake me (Deuteronomy 31:6, Hebrews 13:5) and that He will work all things together for my good and His glory (Romans 8:28).  He has done and continues to do just that.  I witness spiritual growth in each one of us as God does His amazing work in our lives.

I see God at work strengthening David's body, protecting him from illness.  We have seen a miraculous improvement in David's health since his last (3rd) surgery.  There is a chance that we will be backing down the frequency of his transfusions this summer if he continues to do as well as he is currently doing.  We see God giving him a heart of compassion and understanding to those around him.  He is quick to bring troubles (his and others) to God in prayer.  We watched God save David from having a dangerous open heart surgery as a baby and have since found out that he most likely will not need surgery to fix any of his 3 heart defects.  We have watched him grow from a failure-to-thrive infant into a healthy, tall boy who is above the 75th percentile across the board for growth and development.  We also have seen him struggle in his school work and then succeed.

In Josh's life, we rejoice in the small things, particularly the things not many people notice.  We've celebrated the first attempt to initiate imaginative play, making eye contact when talking with a person, working in a group, and accurately interpreting another person's facial expression.  In the past year, we have been thrilled to see Josh be able to use his words to express how he is feeling and what he needs in order to cope with a given feeling.  Two weeks ago, I almost did a happy dance in church when Josh asked an adult how his week was after this adult said hello to him.  I am thrilled with the small victories Josh has in controlling his anger and mood instability, when he willingly uses coping skills (sometimes without any prompting) or goes to his calm down spot.  It is encouraging to hear him crying out to God in prayer to help him when Josh can barely keep up with his oscillating moods.

When some marriages fall apart due to the strain of special needs parenting, God has strengthened ours through each fiery trial we experience.  As we draw closer to God, we find that we draw closer to each other. God has given us wisdom in dealing with our boys and has grown us in our patience with the boys and each other.
Finding beauty even in the cold, bleak winter
Stay tuned for Part 2 of 3...