Posts tagged ‘Autism’

May 6th, 2010

He Heals the Broken Hearted

by MB

The righteous cry out, and the LORD hears them;
he delivers them from all their troubles.

The LORD is close to the brokenhearted
and saves those who are crushed in spirit.

A righteous man may have many troubles,
but the LORD delivers him from them all;

Psalms 34:17-19

I’ve been reading various blogs today about moms who are dealing with autism or aspergers.   I can relate to so much of what they say.  The feelings of why God made their child this way, why God was doing this, why other struggles prevented them from seeing that their child had issues, and why they could not accept that God was not punishing them.

All I can say is that I’m angry at times too.  I weep over so much of the things my ASD child has to endure.  I am sad that she has to work so much harder than her siblings or other kids her age and get half the results of what they get.  It’s just not fair.  If I could take on all her struggles for her, I would.  Yet, that would be the easy thing for me as a mom to do.  That would not be hard at all because I could deal with it.  I would be happy to take it on and have my daughter never struggle at all.

At times, the thread of hope is unwinding and about to break.  God does give us more than we can handle sometimes.  We feel like our foot is slipping off the edge.  We’ve lost our focus.  We feel God is being unfair, unkind, and mean.  We just don’t understand that God is doing the best thing for us and for our kids right in this very moment.

And my heart cries out, “God, help me see it!  Help me to know that your plans are always good and right.”  And little by little, He does show me something.  Sometimes its only enough to reassure me that His plans are best.  Sometimes I go in a shell and He reveals nothing to me at all, but I hear Him.  I hear His voice telling me all the many reminders from scripture I’ve dwelled on over the past year.  It wasn’t for nothing.  He was preparing me for this all along.  I am never truly alone, even if I think I am.

My heart hurts for all of you.  I think of those who have such heavy burdens to bear.  I wish I could take them all from you and carry them myself.  It would be easier for me to do than to sit here feeling useless.  I cry with you and mourn over your children as I read your stories.  I suffer with you.  Truly I do.  Such heart breaking things God is letting happen and it makes me cry out and ask Him why too.

I’ve been reading this book called the Heart Mender by Andy Andrews.  I will hopefully have a book review up in the next week or so.  Anyway, one of the characters resonated with me.  Her name is Helen.  I read this, feeling as if the book was talking about my own anger and bitterness at life:

Helen hated Saturdays. But then she hated Wednesdays too. And Mondays. And Thursdays and the rest of the week as well….Saturdays meant that Helen had to be up at 3:30 to brush out her hair, put on the smallest possible amount of makeup with which she could have still appeared to have cared, and slip into the ridiculous white uniform all waitresses south of Virginia seemed to wear. Only then, feeling like a nursing school drop out, would she drive her aunt’s old pickup twelve miles on mostly unpaved roads to unlock a coffee shop that no one patronized until at least 6:00.”

Later in that same chapter you learn that Helen’s husband had been killed by the Germans and her hatred because of that circumstance:

“Removing her dead husband’s few civilian clothes from their closet, Helen stuffed them into a duffel bag. Out of sight, they were also where she could not smell the cologne that lingered in the collars of the shirts, reminding her of the man she had lost, and continuing to fuel her anguish. Helen’s heartache became resentment that she nourished like a baby, feeding it a steady diet of newspaper reports and radio broadcasts about the war in Europe…Helen’s loathing rage was reserved for Germany and her soldiers–the monsters who had killed her husband and destroyed her life.”

Later on in the book she is asked if she is mad at anyone because of her sulky attitude towards people. She goes on to say how she is mad at everyone for everything. She’s mad at people who are happy and in this story, of a couple who has a son with down syndrome and he is always happy. She is remorseful that she is this way, but that is how she feels. I feel this way too sometimes. (Can’t wait to read how this book plays out though). I feel angry about things in my life I can’t control and I lose hope. I feel angry that people still have their fathers, or they got to adopt, or they have kids who are honor students and athletic all stars. This only fuels the anger that I already have, just like Helen.

I’m only half way through this book. I hope Helen gets it. I hope she realizes that she is loved. I hope she understands what true love is and that all her anger towards the Germans and everyone else is somehow lifted and her heart is mended. I hope one day she can see God in it as she looks back on her life. I hope that for myself and for you too.

For a good post about disability and God’s purpose, read this post by John Knight at Desiring God today.

Technorati Tags: , , ,

CategoryAutism, Encouragement | Comment2 Comments »

Tags:
April 3rd, 2010

April is Autism Awareness Month

by MB

The month of April is dedicated to Autism Awareness.  I probably won’t post everyday about autism, but I’d like to share a few things here and there this month that will be helpful to readers.

According to Autism Speaks, one of the nation’s largest advocacy and science organizations, here are some red flags of autism that can be found early on in childhood:

  • No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
  • No babbling by 12 months
  • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
  • No words by 16 months
  • No two-word meaningful phrases (without imitating or repeating) by 24 months
  • Any loss of speech or babbling or social skills at any age

For us, our daughter did speak, although she was a very late talker.  Sentences were slow coming and often really hard to understand.  In hindsight, I wished we would have taken more notice of this but her being our first child, we trusted what our doctors told us.  They weren’t concerned so neither were we.  Even so, many of these signs were not present.  Our daughter spoke, maybe not clearly, but she did and she was always smiling.  Since our daughter is high functioning, I think this had something to do with it.

I would guess that around 4 years, she was starting to fall behind.  Many of the milestones as found here for that age group were not present.  She didn’t tell stories, her speech was not clear, and her sentences were short.  She just seemed to lack in the language department.  She was often found playing by herself and did not like to be around kids.  That’s not to say she never played with them, but she preferred playing by herself.  The biggest thing I noticed with her is that following simple 2 step directions was a chore.  I only say this because the above list are major red flags, but there are other things one should look out for as well.

Here are some helpful websites about autism.  I suggest you check them out!

The Aut Spot

Autism Speaks

Autism Society of America

Autism Directory for the United States

Technorati Tags: ,

CategoryAutism | CommentComments Off

Tags:
April 2nd, 2010

Autism Awareness

by MB

The day is about over.  Today was World Autism Awareness Day.  Noel Piper’s blog, Let the Nations Be Glad has some great posts and video’s all about autism.  One thing she mentions on her blog is that parents who have autistic chidren are often looked down on or treated as if they are bad parents.

In my own experiences and before I knew I had a daughter with autism, I was often left to feel less than perfect because of a melt down or tantrum and the reactions to it.  I remember having my daughter in a homeschool gym class a few years ago and the teacher was not that nice to begin with.  You can imagine how she  treated a kid that didn’t fit the norm.  My daughter was upset, but couldn’t verbalize her frustration, so the gym teacher told her to go sit down and to come back when she could pull it together.  Needless to say,  I never took her back.  I wrote up an email, unknowing to me that she had autism, and told the teacher that she could have been a little more gentle.

There were many times where I felt the need to defend my daughter.  Some people may have thought I was enabling her.  I don’t know.  I just know that I have always had this overwhelming need to stick up and defend her.  Another time at our old church an older couple was leading the Sunday School class.   My daughter is one who gets “stuck in doorways”.  This is fairly common with autistic children.  They are fearful of people, don’t want to socialize or make new friends.  New experiences are scary.  They see the doorway, see the kids, and are not going to move one more inch.  Basically they are paralyzed with fear.  My daughter was in 2nd grade and the meltdown happened. I just didn’t know what to do.   The older couple looked at me like “Wow, what is wrong with her?” Obviously, I took this to heart and felt like the worst mom on the planet.  After all, what kind of mom can’t control their own child?

We’ve had several incidents with family as well.  I’ve been told that my daughter is retarded, stupid, a few fries short of a happy meal..and a few other unkind names.  These have been the hardest for me to look past.  I have learned who I can share things with in my family and who I just can’t.  I have learned who is accepting of my child and who will never have the opportunity because I will not let them near her.  Thankfully, none of these words have been uttered around her.   She is very sensitive and even if her sister calls her “stupid”, she gets really upset.  We don’t allow those names in our home because God doesn’t make trash and that goes for all of our kids.

There  have been so many things I could point out about how people have treated my daughter or our parenting.  Most of it was unwarranted and careless.  Other times, people just were not sure how to handle my daughter.  My daughter exhibits the hand flapping and rocking at times and people have poked fun at that too.  She doesn’t even realize she is doing it most times, which makes me frustrated that anyone would laugh or poke fun about it.  I’m sure there are some weird quirks other people have, but most people don’t point them out.

Autism is not caused by bad parenting or passive parents.  Of course there are times where our daughter is in need of discipline, but sometimes she is having a meltdown because she can’t express herself in the right way.  I had one of those days today.  Everything in her world was falling apart.  We were trying to get ready for a birthday party which required her wearing a dress.  She got her dress on, but when it came time to put on her tights, she was clearly upset.  I then asked her to clip her toe nails (hygiene is not high on her list) and she had a melt down about it.  I gave her a choice in this situation.  I told her that I would not clip her toe nails which I think was the issue here, but when I came back in 15 minutes, I wanted her to have them clipped so we could get her tights on or she would have to stay home from the birthday party.  She stopped crying and I walked away.  15 minutes later she had her toe nails clipped and her tights on with no help from mom.  Some days are much worse.  Hair combing, washing faces, brushing teeth, and pretty much anything that requires good hygiene is always a battle or a melt down.  Sometimes my daughter walking around with a chocolate mustache,  two different colored socks on, and stains on her shirt is just me giving up.   It’s not because I don’t care that her face is a mess and her clothes are not up to par. It’s because I decided it wasn’t worth the battle at that moment in time.  I say all this because I hope that we will be slow to judge and be more aware that not everything is what it seems.

That’s my two cents on the world of autism.  My hope is that we will become more aware of parents who are dealing with challenges that we  can’t comprehend.  My issues are tame compared to some parents I have read about.  I applaud those moms and dads and families that have such a hard, long road ahead yet embrace it as God’s path for them.  May we come alongside them and not judge, but find ways to encourage them.

Technorati Tags:

CategoryAutism, family life | Comment2 Comments »

Tags:
March 31st, 2010

Don’t Waste Your Autism Part 2

by MB

It was evening and I was walking through the Elementary School halls, taking a tour of the classrooms my daughter would be in.  After 5 years of homeschooling, I worried about her.  How would she react to teasing?  What if another 5th Grader harassed her?  What about bullying?  Will the teachers here have her best at heart?  The fears I had seemed overwhelming.

The Special Ed teacher sat down with me and went over some of the things my daughter would be doing.  She would be taking a Math class with other Special Ed children.  Then she’d be in a Reading Chat where they discussed books.  This would be followed up by Speech and Occupational Therapy which mostly consisted of learning how to socialize by playing games and some one on one interaction to develop her motor skills in her hands which seemed to be lacking.  (At first we had thought our daughter had dyslexia but this is a problem with ASD — having weak muscles in the hand).  I looked over the paper work that I was to bring home and discuss with my husband and then sign and return.

What else could I do?  My options were limited.  I did run into another homeschool mom at church and although she was well meaning, I felt as if I had failed the homeschool community.  “Isn’t there some classes you could take that could help you teach her at home?”  Her words wrung in my ears and nagged me.  Was I giving up too fast?  “Another mom here took a week long class for her Aspergers son because she didn’t feel comfortable using the public school system…”  This was followed by more words about how the public school system has agendas.  I’ve heard it all before and while some of it probably is true, it was unhelpful.  My options were : be Super Homeschool Mom who can beat Autism in a single bound and be a loving wife as well as  teacher to my other two children; or I could hire the job out to professionals not associated with the school system and hope our bank funds didn’t run dry as most of that was not covered with insurance; or I could boldly go where no homeschooling mom wanted to go and trust in the school district.  I realized my choice  was to use the public schools and to trust God with my daughter  and my own fears.  This wasn’t an easy choice.  For me to explain what I mean, you only have to look at my local Christian Homeschool Conference Handbook to see that using the public school was only asking for trouble.  Buyer Beware.  I somehow felt less Christian or less “homeschooly”.  I felt ousted, in a way.  In fact, I found more comfort from people who were in the public school system then from those who had homeschooled.

The first week was pretty tough.  My daughter did not want to go to school.  She cried.  And when I say “she cried”, I mean, she sobbed.  She wouldn’t talk to me.  She thought I was the devil.  She didn’t want to be around “other kids”.  She didn’t want another teacher.  She wanted her mom.  It was all she had known and I felt like the biggest jerk for taking that away from her.  She would not even look at me and  anytime I brought up the subject, her demeanor would change.  There were moments when I wondered if it was the right choice.  Was I making her already fragile capabilities of socializing worse by putting her in a social situation where she is already quite fearful?  Days went by and not much changed.  I knew we couldn’t keep going this way and she had to atleast try it out.  I told her if she still hated it after a week, we would talk about it.  I never said we’d pull her out.  I felt the public school had resources that I could not give her.  To throw away this opportunity would be worse than her hating me right now.

It’s the little things that matter to my daughter and when I told her I’d buy her a new backpack, she was all for going to school.  So she picked out a backpack.  It had hearts on it.  And you know what she told me?  She said “Mommy, I’m bringing the love of Jesus to school.  That’s why I have hearts on my backpack”.  I think that statement was more for me than anything else.  I hugged my daughter and I fought back tears knowing that God definitely loved her.  And He loved me too because in that little statement, I felt such peace about everything.  I knew that God had done something wonderful in my daughter and it took Autism to show it to me.

The entire first day I was praying her day went well and hoping she would be ok.  When I came to get her, she was all smiles and telling me just how much she loved school.  I was so blessed to know that she was doing well and loving it.  It’s been about 2 months now and I can only see good things.  God knew this plan was best and He hasn’t failed our family at all.

The school district has been so positive.  All of the teachers and staff have been so reassuring and hopeful.  The outlook on my daughter has been promising instead of negative.  They do seem to have her best interest at heart.  One of the teachers emailed me last week and told me they couldn’t have expected more from her since she was doing so well there.  She was willing to answer the questions and participate.  This is great news because ASD kids don’t like socializing and she has already done so well in this new situation.  She made a friend there too.  The other day she told me that one of the kids in her class goes to church.

Before all of this happened, she was unwilling to go and be in her church class of 5th graders.  Last week, she surprised me and told me that she did want to go.  She took a step of initiative and participated in something that for her is quite scary!  That is just awesome.  Of course, she has a long road ahead, but I can see only good in all of it.  There will be hurdles and struggles to overcome, but I have to keep trusting God that He will guide us where we need to go.

The biggest adjustment, I think, is not  that I have to send her to public school.  It is the feeling that as a mom who has a child with ASD, I have new eyes.  Before I felt like I had a daughter who was purposely trying to make my life difficult.  Now I see that she often just needs me to be patient with her, to tell her what to expect beforehand, and to give her the opportunity and space to make those wise choices that we’ve talked about so much in the early years.  It is me realizing that not everyone understands her.  It is me being the one who will protect her and keep her away from such people who don’t really want to understand.  It’s hard to bring her into field trips designed for homeschool families knowing full well that there are no other autistic kids.  Most people don’t understand when kids who are 11 years old don’t even want to look them in the eye.  They think that I just have a rude daughter.  It’s my job to not label her or make her into a charity case, but to make people aware that my daughter doesn’t operate the same as most kids.  Give her some space and she’ll come around, but for now, expect her to be “weird”.

In the end, I want people to see my daughter not as a defect or a dysfunction.  I don’t want her to just be “that autistic girl”.  I want people to see her how God sees her.  God has had to work in my heart to get me to see that way.  Once I realized it…once I saw her like Psalms 139:15-16, I was able to realize just how much this was God’s plan for her life.  Her frame was never hidden from God when He chose to make her in the secret place and intricately woven in the depths of the earth…God saw her.  He wrote the book on her life.  He knew how the pages would be filled even before she was created.  She is not defined by Autism, but by a loving God who created her this way.

As for homeschooling, I still feel God leading me on this path.  My other daughter wanted to go to public school about a month ago because her sister was going there, and so I gave her a choice.  I was feeling quite burned out and sad that my kids just didn’t want me to do this anymore.  So I gave them an option.  I told them they have to choose and then be able to live with the choice they make.  They came back to me the next day and told me that they wanted me to continue to homeschool them.  I made it clear then that they have to not whine that they want to be in “regular school” then.  They have to live with their choice.  I’m not overly happy with some of the ways I’ve been treated by other homeschoolers.  Some have been completely negative.

The other day, when I was talking to a veteran homeschooling mom, she said “You know, you have to do what is best for your kids.  No regrets.”  She is right.  I hope no other mom has to feel guilty for doing what is best for their kid.  Parents get a ton of support when they choose to pull their kids out of public school and homeschool.  Why can’t the support be extended when we choose to use the public school because that is the best option for our kids?  Homeschool and Public school are options, but our first choice should always be to look to God.  He is the One who holds the answers.  If we fall on Him and trust in Him, we can be certain that His grace will be enough whether we homeschool or not.  Through it all, God has brought me to a place where I know that He uses every bad thing in my life to bring me closer to Himself.  He loves me that much.  Don’t waste your bad situations.  God uses them more than we could ever imagine.

Technorati Tags: ,

CategoryAutism, Don't Waste Your Life | Comment6 Comments »

Tags:
March 31st, 2010

Don't Waste Your Autism Part 2

by MB

It was evening and I was walking through the Elementary School halls, taking a tour of the classrooms my daughter would be in.  After 5 years of homeschooling, I worried about her.  How would she react to teasing?  What if another 5th Grader harassed her?  What about bullying?  Will the teachers here have her best at heart?  The fears I had seemed overwhelming.

The Special Ed teacher sat down with me and went over some of the things my daughter would be doing.  She would be taking a Math class with other Special Ed children.  Then she’d be in a Reading Chat where they discussed books.  This would be followed up by Speech and Occupational Therapy which mostly consisted of learning how to socialize by playing games and some one on one interaction to develop her motor skills in her hands which seemed to be lacking.  (At first we had thought our daughter had dyslexia but this is a problem with ASD — having weak muscles in the hand).  I looked over the paper work that I was to bring home and discuss with my husband and then sign and return.

What else could I do?  My options were limited.  I did run into another homeschool mom at church and although she was well meaning, I felt as if I had failed the homeschool community.  “Isn’t there some classes you could take that could help you teach her at home?”  Her words wrung in my ears and nagged me.  Was I giving up too fast?  “Another mom here took a week long class for her Aspergers son because she didn’t feel comfortable using the public school system…”  This was followed by more words about how the public school system has agendas.  I’ve heard it all before and while some of it probably is true, it was unhelpful.  My options were : be Super Homeschool Mom who can beat Autism in a single bound and be a loving wife as well as  teacher to my other two children; or I could hire the job out to professionals not associated with the school system and hope our bank funds didn’t run dry as most of that was not covered with insurance; or I could boldly go where no homeschooling mom wanted to go and trust in the school district.  I realized my choice  was to use the public schools and to trust God with my daughter  and my own fears.  This wasn’t an easy choice.  For me to explain what I mean, you only have to look at my local Christian Homeschool Conference Handbook to see that using the public school was only asking for trouble.  Buyer Beware.  I somehow felt less Christian or less “homeschooly”.  I felt ousted, in a way.  In fact, I found more comfort from people who were in the public school system then from those who had homeschooled.

The first week was pretty tough.  My daughter did not want to go to school.  She cried.  And when I say “she cried”, I mean, she sobbed.  She wouldn’t talk to me.  She thought I was the devil.  She didn’t want to be around “other kids”.  She didn’t want another teacher.  She wanted her mom.  It was all she had known and I felt like the biggest jerk for taking that away from her.  She would not even look at me and  anytime I brought up the subject, her demeanor would change.  There were moments when I wondered if it was the right choice.  Was I making her already fragile capabilities of socializing worse by putting her in a social situation where she is already quite fearful?  Days went by and not much changed.  I knew we couldn’t keep going this way and she had to atleast try it out.  I told her if she still hated it after a week, we would talk about it.  I never said we’d pull her out.  I felt the public school had resources that I could not give her.  To throw away this opportunity would be worse than her hating me right now.

It’s the little things that matter to my daughter and when I told her I’d buy her a new backpack, she was all for going to school.  So she picked out a backpack.  It had hearts on it.  And you know what she told me?  She said “Mommy, I’m bringing the love of Jesus to school.  That’s why I have hearts on my backpack”.  I think that statement was more for me than anything else.  I hugged my daughter and I fought back tears knowing that God definitely loved her.  And He loved me too because in that little statement, I felt such peace about everything.  I knew that God had done something wonderful in my daughter and it took Autism to show it to me.

The entire first day I was praying her day went well and hoping she would be ok.  When I came to get her, she was all smiles and telling me just how much she loved school.  I was so blessed to know that she was doing well and loving it.  It’s been about 2 months now and I can only see good things.  God knew this plan was best and He hasn’t failed our family at all.

The school district has been so positive.  All of the teachers and staff have been so reassuring and hopeful.  The outlook on my daughter has been promising instead of negative.  They do seem to have her best interest at heart.  One of the teachers emailed me last week and told me they couldn’t have expected more from her since she was doing so well there.  She was willing to answer the questions and participate.  This is great news because ASD kids don’t like socializing and she has already done so well in this new situation.  She made a friend there too.  The other day she told me that one of the kids in her class goes to church.

Before all of this happened, she was unwilling to go and be in her church class of 5th graders.  Last week, she surprised me and told me that she did want to go.  She took a step of initiative and participated in something that for her is quite scary!  That is just awesome.  Of course, she has a long road ahead, but I can see only good in all of it.  There will be hurdles and struggles to overcome, but I have to keep trusting God that He will guide us where we need to go.

The biggest adjustment, I think, is not  that I have to send her to public school.  It is the feeling that as a mom who has a child with ASD, I have new eyes.  Before I felt like I had a daughter who was purposely trying to make my life difficult.  Now I see that she often just needs me to be patient with her, to tell her what to expect beforehand, and to give her the opportunity and space to make those wise choices that we’ve talked about so much in the early years.  It is me realizing that not everyone understands her.  It is me being the one who will protect her and keep her away from such people who don’t really want to understand.  It’s hard to bring her into field trips designed for homeschool families knowing full well that there are no other autistic kids.  Most people don’t understand when kids who are 11 years old don’t even want to look them in the eye.  They think that I just have a rude daughter.  It’s my job to not label her or make her into a charity case, but to make people aware that my daughter doesn’t operate the same as most kids.  Give her some space and she’ll come around, but for now, expect her to be “weird”.

In the end, I want people to see my daughter not as a defect or a dysfunction.  I don’t want her to just be “that autistic girl”.  I want people to see her how God sees her.  God has had to work in my heart to get me to see that way.  Once I realized it…once I saw her like Psalms 139:15-16, I was able to realize just how much this was God’s plan for her life.  Her frame was never hidden from God when He chose to make her in the secret place and intricately woven in the depths of the earth…God saw her.  He wrote the book on her life.  He knew how the pages would be filled even before she was created.  She is not defined by Autism, but by a loving God who created her this way.

As for homeschooling, I still feel God leading me on this path.  My other daughter wanted to go to public school about a month ago because her sister was going there, and so I gave her a choice.  I was feeling quite burned out and sad that my kids just didn’t want me to do this anymore.  So I gave them an option.  I told them they have to choose and then be able to live with the choice they make.  They came back to me the next day and told me that they wanted me to continue to homeschool them.  I made it clear then that they have to not whine that they want to be in “regular school” then.  They have to live with their choice.  I’m not overly happy with some of the ways I’ve been treated by other homeschoolers.  Some have been completely negative.

The other day, when I was talking to a veteran homeschooling mom, she said “You know, you have to do what is best for your kids.  No regrets.”  She is right.  I hope no other mom has to feel guilty for doing what is best for their kid.  Parents get a ton of support when they choose to pull their kids out of public school and homeschool.  Why can’t the support be extended when we choose to use the public school because that is the best option for our kids?  Homeschool and Public school are options, but our first choice should always be to look to God.  He is the One who holds the answers.  If we fall on Him and trust in Him, we can be certain that His grace will be enough whether we homeschool or not.  Through it all, God has brought me to a place where I know that He uses every bad thing in my life to bring me closer to Himself.  He loves me that much.  Don’t waste your bad situations.  God uses them more than we could ever imagine.

Technorati Tags: ,

CategoryAutism, Don't Waste Your Life | Comment6 Comments »

Tags:
« Older Entries