Getting Real: Questioning a Diagnosis

It has been just over a year since we received the official diagnosis that Little Man had Autism.  It came with relief, answers, and help.  However, in the last year I have found myself living in a lot of doubt.

Autism.  It's a pretty hot topic.  As of now there is only speculation to the cause and "cure" of Autism.  A debate that I am not willing to engage in.  The process to diagnose it can be tedious or simple.  We went the tedious route.  We had phone interviews, a questionnaire (300 pages long), documents from the school, developmental reports, a developmental screening done by a team of experts, and an appointment with the specialist who made the official diagnosis.  It was not done lightly.

At first all of this offered reassurance that yes the diagnosis was right.  However, as time has gone one I have spent hours wondering if something went wrong.  I feel like I'm staninding with a wall of evidence behind me but doubt makes me unable to stand on it's assuances.

Tony and I have sat in a room where we have had multiple professionals say things like, "well, I'm not sure what you told them but..." or "we don't see that here, he's NOT doing that" or "we know a lot of kids have been misdiagnosed."  The "I'm not sure how he got this disagnosis" tends to sting.

As Tony and I dealt with a new situation in which Little Man was not coping well, Tony looked at me and said, "This is how I know it wasn't wrong."  The evidence is there, the behaviors are there.  However, as a mom living in a world that wants to debate my child's disability more then it wants to help my child with his disability it can seem very lonely.

Seeing the Child Through the Disabilty

Little Man's ASD is only one part of who he is.  It affects how he relates to everything in his life but it doesn't not make up his entire person.  Sometimes it can be hard for people to see the child through the disability.  So I would like to take you on a journey of my son and who he is.

He is sweet.  He's got this deep down sweetness that comes out in his giggle, his big dimpled smile, the way he grabs your hand or leans against you leg.

He desires to be "normal".  He doesn't want to be in a world of his own, excluded from others.  He needs help but he wants to have friendships.  He wants to play sports.

He loves his Grandpa and Papa.  The other day he told me, "Member mommy, I live with Dampa.  Ok.  Member?"  They are his favorites.

All boy.  He is 100% boy.  He loves Thomas, Lightening McQueen, Batman, and Spider Man.  He likes to wrestle and crash into furniture.  He loves to be outside and run in circles.  His favorite color is green!

He loves pizza, carrot sticks, and candy (my goodness does he like candy!)

He wants to grow up to be just like Daddy!  He loves Daddy's buttons on his shirts and likes to dress like him.  He is obsessed with Daddy working on the house and is so proud of himself when he gets to be a helper.

He is Momma's Little Man.  "I be with you, Mommy!"  Run to hug me when I pick him up from school screaming, "MOMMMY!"  And when Daddy says to hold an adults hand, he always picks mine.  I am definitely his favorite big person.

There is so much of him that is just like any other little boy.  Adventure and fun!  Climbing and rough housing.  The paper he brought home from school says that when he is 100 he is going to go to work, just like Daddy.  When Sweet Pea declared Mommy the "Prince" he came up and declared that, "Mommy no be prince.  You a girl!  I be the Prince!"

Don't discount who he is as a whole.  He will shock you!

Living with Autism

April is Autism Awareness month.  Recently new statics came out saying that 1 in 68 children have Autism and 1 in 42 boys have Autism.  Most likely you know someone with Autism and I think everyone is pretty "aware" of it.  However, I think it is greatly misunderstood.  I want to focus on Autism this month, on what it is and is not and how it affects our lives, etc. 

Living life with Autism is hard and unpredictable but also full of blessing and wonder. Here are some things I wish everyone knew about our lives with Autism.

1. Our child is on the spectrum. 

Little Man is higher functioning so he is on the upper end of ASD (Autism Spectrum Disorder).  Just because he doesn't sit in a corner spinning plates all day does not mean that he was mis-diagnosed).  If you look at my child as a determination on whether you child is on the spectrum or not you will probably miss something.  Their are "classic" things that most children with Autism struggle with (socialization, communication, eating problems, sensory problems, etc) but each child will display those things differently.  We are constantly learning who he  and how ASD displays it's self in his life.

2. Little Man is SMART!  

 I love to watch people come to this realization.  He is a smart cookie.  He may struggle to verbalize.  He may not yet know his numbers and letters.  Those things do not determine how intelligent he is though.  His biggest strength is that he can look at all these different pieces and put together a bigger picture of something.  Unspoken things or things Tony and I speak "around" do not get past him.

3.  Our lives are a roller coaster ride. 

There is a reason Little Man's therapist ask how his week went.  Some days he is doing great, happy as a lark, talking well.  Other days he struggles to look at us, struggles to talk, lays around and mopes.  Some mornings he starts low but snaps out of it sometime in the day and does great.  And vise versa.  He can have an awful day at school and do exceptionally well at Awana.  We never know how he will handle something and he often shocks us (good or bad) making us very unprepared.

4.  We learn everything. 

Everything Little Man can is because he learned how to do it.  He had to be taught.  He plays imaginative games he learned from his sisters.  He knows how to lie because he watched others do it.  He can take turns in a board game because he was taught.  He builds pyramids when he builds with Legos because that's what mommy builds.  Every moment that he is in our care is a therapeutic moment in which we are teaching him something.  We don't just play memory match to have fun but we do it to teach turn taking, patience, communication, and enjoyment to be with others.  It's about the process, not about the game.

Getting Real: Seeking Help Part 2

You can read part 1 about our journey into the world of counseling here.

We as a family have seen a total of four different Counselors and three Therapist on a regular basis.*  We have had four specialty doctors, one of whom is regularly active in our kids lives.  We have had numerous other therapists and specialist in and out of our lives to help us.  One of our kids have been "specialized" with in the foster care system, which means, among other things, we see a caseworker once a week and a nurse once a month.

*Side Note: I say counselors for those who are helping our family emotionally and therapist for those who are helping our children physically.  That is the easiest way for us to distinguish it in our home.

All of that can be exhausting.  In and out of waiting room with 1 to 3 children to entertain.  Packed lunches and snacks.  Dealing with upset kids because I forgot the water bottles again.  Trying to communicate to each and every one of them what they need to know about that child.  Trying to remember what I have and have not told our caseworker and what paper work I still need to send her.

It gets lonely.  It gets tiring.  It's draining.  There is a lot of guilt associated with it.  From the forgotten water-bottles to lack of implementing a method I should have implemented this week to putting off the one on one counseling session so long that the Counselor doesn't even talk about it any more.

However, though all this I've found this surprising sweetness. Those moments when I get to stand beside another Momma as she talks about her child and the struggle they may be having. 

Oh those are so sweet.  To find a companion. For a brief moment to "get it" with her.  I might not know what goes into her every day but I do know its a great deal.  I know that she feels like she is holding on to her finger tips, fighting with every ounce of her strength for her child.  She has become a mini expert in crisis management, sensory input, speech skills.  And for a small amount of time we both get to see a life with no judgement of how we should be doing it, but rather with an unspoken word encouragement and support.

Getting Real: The Fish Bowl

When we were taking our PRIDE classes to get our Foster License we were told that we would be living in a fish bowl when it came to our parenting.  Everybody would be there to judge us.  We've seen the truth of that-caseworkers, people who go to church, teachers, family, etc.  We've even sat before a judge as lawyers questioned every aspect of it.

If this is true for foster parenting its three times as true for parenting a special needs child (including the lawyer part).  I have never felt so judged and attacked in my parenting as I have when it comes to Little Man.  You have those who view you as soft parents who let his behavior get out of control.  You have others who think you are too hard on him and his autism should be an excuse for his behavior.  You have others who think that if you just provided more positive reinforcement, high expectations, structure, etc then you he would do better.

We have two therapists, a caseworker, a nurse, teachers, social worker, counselor, and more working with him on a regular basis.  Everybody has an opinion, and few of those opinions take into consideration that I'm a momma to three other kids, two of them the same age as Little Man, two of them also high needs.  They don't consider that I'm trying to not drowned my marriage in all of this, and that my husband is my number 1 priority and no child will trump that.  They don't consider that my house hangs on the balance of falling to pieces at any moment and I can't allow that to happen (not with multiple people entering my home every week).

However, there are those people: therapists, friends, family, who cast no judgement and look at the situation in its entirety, whose suggestions are just that.  Many of those people have seen the tears roll down my cheeks, have listened to random rants that are sometimes angry and sometimes sad and sometimes a bit bitter.  They have listened for hours.  I'm beyond thankful for those people, they hold me up.

And then there is Tony.  What would I do without that man?  Not one week goes by that I don't tell him I feel like it's all my fault, it must be.  Not a week goes by that I don't scream at him as a result of someone elses behavior.  Not one week has gone by that something didn't get done for him because of something else that I had to do first.  But there he stands, beside me, leading this family.  I love that man and would have fallen to pieces without him.

I know I'm not alone in these feelings, I also know the opinions won't go away.  All of it is an aspect of raising a child with special needs.  Maybe I grow a thicker skin.  I hope not though.  I hope I learn to hear it but filter it through the truth of Christ first and his value of me, of my husband second and how he views me as a mother, and then those friends and families I treasure who have seen our lives in many different aspects.

If you want an amazing special needs blog post check out this one by Kate at Apply Pie, Anyone? 

10 Fingers, 10 Toes

"Do you want a girl or a boy?"

"All we care is that the baby is healthy and has 10 fingers and 10 toes?"

It's a phrase many parents use when they are expecting a child.  We used it when we were expecting Sweet Pea.  It's the dream every parent wants, to raise a "normal" child.

I'm not sure what every foster and adoptive parent believes about the children they are bringing into their homes.  I think most know that their will be delays and issues.  Some are welcoming children who they know are already diagnosed with special needs.

However, I think most, when they look the full reality of their child's needs in the face, have a grieving process.  There is a process of saying good bye to childhood and adult hood for their kids.  A time of looking at the future and wondering; what is it going to be like.

I have not held Little Man since the day he was born.  But I do, as his mother, have so many hopes and dreams for him.   I want him to live a full and productive life.  I want him to be successful as adult.  But I also know there are so many things I am saying good bye to. 

Each day brings something of joy and success but it also brings a harsh reality of the future we may face.  I love my Little Man, and I will fight hard to help him live life at his very best.  And while he is not "healthy", he is an amazing creation of God.

Book Review: Held: Learning to Live in God's Grip

Recently, I was given the chance to review Held: Learning to Live in God's Grip.  Held is a Bible Study for Special-Needs Parents by Lee and Sandra Peoples.  Lee and Sandra have three boys, one of whom his Autism.  (For those of your interested-The Peoples are also in the process of adoption with their third son.) Lee is a Pastor and their church has sought be create a wonderful Special Needs ministry.

When I heard of the opportunity to review this devotional I was very excited as Little Man's diagnosis is still very fresh.  It came at a perfect time as we walked away from a difficult IEP (Individualized Education Plan) meeting.  Things had gone about opposite of how we thought they would go and it was (still is) a real struggle.  The People's talked honestly about many of their own struggles with Doctors and family and church.  It hit close to home in so many ways.

Lee and Sandra did three things that I love in this book. 1. They focused the whole study on God; how we relate to God as we go through the struggles of raising a child with special needs, the truth of who God is in our lives, and how God expects us to respond in difficult situations.  2. The present the gospel message very clearly, declaring the truth of who Christ is. 3. Everything they say is deeply rooted in God's word.

I do wish that they had placed the scripture references at the top of each section of reading for quick reference and reading.  Some scripture is quoted within the text and others are just mentioned.  I would have been nice to have it listed at the top though.

This book was a quick and easy devotional.  Great for the family who is hopping from appointment to appointment and meeting to meeting.  It would also be a wonderful study to do as a group.  I would personally love to do this with other special need parents and build that community, bond, and support.

Overall, I really enjoyed Held: Learning to Live in God's Grip.  It is definitely a gift I would give to a parent going through the process of diagnosis or a worn out parent tired of therapy and meetings.

Check out Sandra's Blog or (in)able Special Needs Community (part of the (in)courage network) where Sandra contributes. I truly enjoy reading what she writes and I know it will bless you also.

The Day of Diagnosis

We waited almost a year to get the diagnosis.  A year of evaluations, TONS of paper work, and phone calls.  Finally, the day arrived and we packed up our kiddo and headed to the Pediatric Specialists office.  It was our 5 year anniversary and my facebook status said this:

"This night five years ago was a night I got very little sleep as I excitedly waited to marry the most incredible man the next day. Never would I have imagined that five years later would be another night of little sleep as we wait to sit in a doctor's office with one of our kiddos. Excited and nervous to finally get the answers that we set out looking for 11 months ago."

 A couple of hours after walking into the doctors office we walked out this the diagnosis......Autism.

We weren't upset or shocked, just completely relieved.  And we stayed on cloud 9 that night and the rest of the weekend.

Then Monday came.  Our anniversary weekend was over, our diagnosis wasn't as fresh, and we were back to the daily grind.  We were left wondering one thing.....what now?

We had no clue where to go or what to do from here.  We needed to make decisions and didn't know how to make them.  There was one other thing pressing in on me....

"How am I going to raise this child?"

I wish I could say I knew the answer to that question.....I don't.  However, I'm doing what I do best.  Researching, reading books, reading blogs, finding support.  And by the Grace of God we are raising our special needs child one-day-at-a-time.

Favorite Blogs About Foster Care and Adoption

Looking for a good blog about Foster Care or Adoption?  I have several favorites.  I have a lot I read and follow.  Most of those can be found on the side.  So here is my criteria for sharing the ones I did.

1. The blogger has to post pretty regularly.
2. They have to talk about foster care or adoption pretty regularly.
3. They have to be a blog that is both real, but also encouraging.

Life With a Personal God-Jami Kaeb

I have the amazing privilege of knowing Jami in real life.  She has a passion to follow after the heart of Jesus.  She has adopted internationally and through the Foster Care system and is now working on her second international adoption.  She is incredibly real with what God is showing her.

The Zap Life-Aaron and Julie Zapata

I have so blessed to call Aaron and Julie friends.  They haven't been on this Foster Care journey long but God has already taught them so much.  So often I find my head nodding along as I read agreeing with everything they wrote.

One Thankful Mom-Lisa Qualls

I happened to stumble upon Lisa's blog one day and prayed a quick pray of thanks to God.  Lisa is so very real.  She shares her life and her family but is still great at respecting what needs to be private.  She is an encouragement and blessing.  I'm always thrilled to see you put up a blog post, even though I know that often her words will be hard to hear and ever so convicting.

The Forgotten Blog

The Forgotten Initiative was started locally by Jami Kaeb (see above) and has grown throughout the nation.  This blog always has great "in the trenches" stories of the fostering community.  It is motivating.

No Greater Joy Mom-Adeye

Wow! is about all I can say.  Adeye and her husband (who blogs at No Greater Joy Dad) have opened their hope to some tough special needs kids.  They have at least 4, but I believe the number may be greater.  Since we are caring for a special needs child this blog is always a blessing to read.  If you do NOT wanted to be convicted and moved about the turmoil and hardship of special needs children around the world then this is NOT the blog for you!

Do you have a foster or adoption blog that you just love to follow?  Feel free to share in the comments section.

Being Honest About Being Honest

The other day our kiddo had a rough time in Sunday School.  I felt like a miserable failure.  We had put some things into place so that the teacher would not have to go through this, but those things didn't work out.  The extreme agitation stemmed from Mommy and Daddy being gone the night before, so he didn't get everything the way her normally does....then Mommy and Daddy turning right back around and plopping him in Sunday School.

When I picked him up he was the worst I had ever seen.  Tony and I worked to get him calmed down, and we partially succeed (he was still pretty edgy, but not terrible).  We had a potluck at church, so lots of people.  I walked through most of that afternoon on the brink of tears.  I asked Tony if he could tell, he said he couldn't.

Really?  I'm not so good at hiding emotions.

Lots of people asked the, "how are you?" question.  And I know some of those people really did care.  But on my face was a smile and a "I'm alright."  I was NOT going to cry at a church potluck.  I was not going to blubber my way through a story that most people wouldn't understand anyway.  I was NOT going to be honest.

I think most of the time, that's the way it is.  I know that this person and this person and this person are struggling with all these things, but when we come face to face we plaster on fake smiles and say we are fine.  It is hard to find people to be honest with.

Why is that?  Fear of judgement? Fear of understanding? Fear of vulnerability?  Feeling like the other person lacks interest? Or time? Or compassion?  I know that this is true for why I don't take the time to listen to others.

I want to be a better listener, a more empathetic friend, a person to take the time.  I want to be that, because I seriously need others to be that for me at times.