Wednesday, December 17, 2014

Sensory Integration Dysfunction...Wait, What?!

What is this you might ask?  This is our newest journey with our beautiful Lia.  While the doctors haven't necessarily been wrong about the other diagnoses...this has just been added to the list. Some of you may think, no way, no child can keep having so many different diagnoses.

Well, she does.

Our brain is such a complex system, so many functions going on at once, some brains are just wired a little different.

Now, I do believe a lot of Lia's diagnoses are related.  And this last one is the one that excites me the most.

You may think I'm crazy for saying this, but when you live with your child day in and day out and she is truly the hardest part of your day, every day, draining almost every ounce of energy from you and you don't know why...as a mother I HAVE TO FIGURE THIS OUT.  I NEED an answer almost as much as I need air to breath.  This may seem dramatic to you, but when the world (other than her teachers and therapists) say things like, "she's such a joy, she's such a great kid!  We just love, Lia." And while I love my child, I think to myself how come this is so hard for me to see? It makes you want to find out if you're crazy or not.

It turns out I'm only a little crazy ;)

I want to put it in some perspective for you:  I want you to think of each of your children or your child, now do they behave better for you or do they behave better for others?  I am guessing the latter. That's pretty typical.  I need you to understand that I have three other children, so I do have some perspective here.  I know that kids will be kids and that most children tell lies and that kids are never going to be totally obedient, but Lia is not your typical kid.  As her play therapist says, Lia is the master manipulator, everything she does is to an extreme.  It's a gift.  She is gifted.

This is both good and bad.

Good because her brain is like a sponge.  She has an IQ of over an 130.  She is gifted in art, language, math, and vocabulary.

What could be bad about this you might ask?  Having a smart kid is every parents dream, right?

Of course, but gifted doesn't mean the same thing as being smart.

Many gifted kids flunk out of school.  Many gifted kids give up easily and turn to drugs, alcohol and crime.  Many gifted kids become lazy and manipulate the system.  This is a social problem.  SO MANY GIFTED KIDS GO UNNOTICED .  And when they are diagnosed there aren't enough programs available to help them.  But this is a whole other issue....

What I'm trying to say is being gifted isn't just about being smart.  Usually with gifted children comes issues like severe anxiety.  Not the kind you get before a job interview or when you go out on a first date, their anxiety can be so overwhelming that other functions of the brain go out the window.  So we deal with peeing in pants during the day, lots and lots of lying, complete and total meltdowns, yelling and screaming that our rules and her life isn't fair, throwing herself against walls and doors, she won't sleep at night, she draws on furniture and scratches into furniture. And what's hard is we don't always know when this is going to happen, but I will tell you this...she usually always does it within the four walls of our own home.

We don't like going on vacations.  Because vacations means major change.  Lia doesn't do well with even small changes from our daily schedules.  But we do it for our children and our family, and we always know that we will be dealing with the monster version of Lia when we get home...why?  Well we may have finally, after four years of searching found a big missing link: Sensory Integration Dysfunction.  

We took Lia to Primary Children's for some testing...and sure enough she has it.  In fact she is so severe that the OT (Occupational Therapist) said she hadn't seen it affect a child this bad in all her testing, unless that child was autistic.

So what does this mean...I'm getting to that.  But first I want to help you understand why I am writing this.  While it is therapy to get all my feelings out in hopes that someone will understand how I am feeling every day and have empathy... My main hope is to help those who are feeling as defeated as I am.  I want you to see that maybe this is an answer for your child as well.

Lia from a very young age did not like textures.  She would gag easy and she would hold food in her mouth for hours...it was awful.  She hated socks and certain fabrics. She seemed calm but wasn't very affectionate as a baby.  Sensory babies are just like this.  Sensory Integration Dysfunction is where a person does not process sound, light, touch, smells, or any of the senses in a way that most of us do. In fact as they get older it usually disrupts almost every aspect of their lives, causing in some cases extreme anxiety, anger, and withdrawn feelings.

They have a hard time staying on task and may appear clumsy or awkward. Their fine motor skills aren't great and they struggle socially with their peers. They have a hard time following rules, they need certain types of touch, with Lia I have to hold her super tight or rub her arms and legs fairly hard for her to feel calm. Most are also very very sensitive emotionally.

There is a whole world out there for these kids.  I really believe that this is what we have been looking for for our Lia.  I pray that our days will get a little easier as we start her new therapy.  It has truly been a journey.  So many days I just want to give up and just see what happens, but when I see that she really does have these diagnoses and that there is help for her and us, I keep moving on.  She may never be my easy child...but if I can get her in a place where she can feel a world free of an overload of senses, then it will be worth it.

With love,
Niki

Wednesday, October 8, 2014

Not Easy to Like and Feeling Helpless...but Looking to Hope.

I know it's been awhile since I wrote a post.  And to my surprise I have had a few people ask if I had any updates about Lia.  Well...I do.

This last year has been one of the hardest for me in a while.  I'm not exactly sure why?

I think I've just felt overwhelmed with so many things going on that I finally just broke down and I'm still trying to recover.

However with all of life's curve balls and stresses that we all feel, still, our number one worry is our dear Lia.

While we struggle with therapy sessions with Jared once a week and the worry of him not catching up completely, his disposition is such that he's easy to like, he is happy and loving and overall a great little boy.

While this may sound harsh and cruel, Lia's disposition is such that she's much harder to like on a daily basis.  She whines and cries a lot, she fights and throws amazing tantrums and she can just be plain mean.  And that becomes draining after 5 years.  Leaving me feeling helpless and tired.

After working with psychologists, therapists, teachers and now a psychiatrist, we finally have an idea of what we are dealing with.  Lia was diagnosed with clinical anxiety, sensory motor disorder and she is gifted.  Thus creating a rather difficult combination for all in involved.  She shows signs of autism, but doesn't qualify for their help.  She struggles with school in many ways, yet she is so smart that there is no program to help her.

Once again, I feel helpless.  Helpless as her mother.  
As she has no idea how much we truly love her and want to fight for her.




We hear things like, "I won't follow your rules." "I don't need you." "I hate you." "I want a new family." "You don't care about me." on a daily basis from Lia.  There is so much lying and disregard to our family rules that we can't trust anything she says.

Her teacher is struggling with her as well.  We have had meetings and email constantly.

We have also found that Lia is allergic to red and yellow dyes in food.  Any and all kinds of yummy candy, chips, frosting and even vitamins push her over the edge.  I call it the Dr. Jekyll and Mr. Hyde reaction.  I know right away when she has come into contact with these dyes.

Overall, most days we just survive day to day.  We have tools and we have tried oils.  The only thing we haven't tried really, are meds.  While I'm in no way opposed to medication (I feel they can be very beneficial) it's still hard for me to accept that my almost 6 year old may need medication to function well throughout her life.

In the end, if you see that I'm more reserved, or I stay in my house a little more...just know that I'm tired.  I'm stressed and what we are dealing with isn't just a phase, like so many have lovingly tried to tell me.  Lia's little brain was given some real big challenges that she is working on dealing with. While we as her parents have been given the difficult opportunity to grow from all of this; we are making slow progress and feel that many days we are failing.  It has taken its toll on our family.

Lots of love,
A hopeful but tired mama

Tuesday, May 27, 2014

I was terrified....My fear came true.

Many of you know that we have adopted two of our four children.  



Our Lia came to us through adoption.  We never met her birth mom or dad and we have never had any contact with them since her birthmother closed the adoption when Lia turned 6 months old.  This has been both a blessing and a curse for me as Lia's mother.  As it is easier not to have contact, but harder in regards to Lia ever wanting to meet with her birthparents.

Lia is a very passionate, inquisitive girl.  She thinks things through, she worries and stresses about almost everything.  Her sensitivity level is high, so when something changes in her life, she tends to not deal well with it.

However, along with that passionate personality comes a fun loving, super caring, smart girl.  She can love you almost to death.

But with that passion, my fear of her understanding that she was adopted has scared me for a long time now.

Lia has always known she is adopted.  However, she hasn't always known what adoption means. Because of her personality, I have felt that I needed to, at least, wait until she asked me what it meant or where she came from...and so I did.  I know her so well that I knew it would push her further than she's ever been pushed before.  And I wasn't sure if she or I could handle that.

I was terrified.

And tonight that fear became a reality.

After reading a story about bravery, we talked about what we could be brave about.  Lia said, "I can be brave about being adopted." (yes, I started to cry) I know now she had been thinking about it more then I had known.

Then she looked at me with those big brown eyes and asked what adoption actually meant and where she had come from.  So I told her.  I told her she came to us through her birth parents.  She asked me their names, so I told her.  We haven't talked about her birthparents before.  So this was VERY hard for her.  She said she wanted to go live with them.  This was VERY hard for me.  She said she wanted to get to know them and see them every day.  I told her it wasn't possible.  This was VERY hard for her.  She told me she missed them and wished they would have kept her.  This was VERY hard for me.

I hugged her and stroked her hair.  We cried.  A lot.  I told her that they love her very much.  I told her they knew the life they had would never be the best life for her.  I told her that God had a plan for all of us and that He needed her to come through them to be with us.  I told her so many of her family and friends are adopted.  I told her it was what made her, Lia.  I told her that she has four parents that love her, but we were the ones who could care for her in this life.

She hugged me harder.  She told me I was the best mom in the world.  I told her I knew she was supposed to be my daughter.  I told her that one day, if we can, we will try to meet them, but if not, she will be able to find them in heaven.  She liked that too.  In the end, Lia was brave.  Her little 5 year old going on 30 self, took it all in.  I know this discussion isn't over.  And I know her pain and suffering isn't over either, but she was brave and I am proud to be her mother.

I learned something tonight:

We may not understand's God's plan for us.  It may seem ridiculous and hard.  There may be 20 easier ways for us to accomplish what we think He wants us to do or learn.  But He knows us better than we know ourselves.  He loves us more than we love ourselves.  Don't you think He would have in mind what's best for us?  Her trial of adoption has already helped her grow.  I told Lia that she had a choice, she could either be angry and be alone in her grief or she could see how beautiful adoption is and share it with others and one day help those who are struggling with being adopted.  And her young sweet mind said, I want to help others.

What a gift.

My fears came true.  But once again, God showed me that His plan is much better than my own.

Lots of love,
Niki


Wednesday, February 5, 2014

Clinical Anxiety and Borderline HFA = One Overwhelmed Mama

So many times, as parents, I think we watch our children and wonder, "Am I doing a good job?  Can I do a better job?  Do I really know what they need or how to be the parent they need?"

I will admit, I'm a worrier.  I worry almost about everything.  I worry if I'm too strict or too lax, I worry about my family's safety daily, I worry about health, sickness, pain, and mostly...

...I worry if I'm being the mom each one of my children need.

Each child is so insanely different.  You finally think you have parenting down and then boom, the next one comes out laughing and tells you otherwise.

How do you know how to work with each little amazingly completely different spirit?

To be honest, I am in no way sure of that answer....but just like the rest of you, I'm doing my best.

I want to make sure you all understand how much I love each one of my children. They have all come with so many unique and amazing gifts.  Each one giving me both joy and heartache.

As you know, I have discussed some of our challenges with our little Lia.  The name of my blog is about her.  Since she was two, her strong spirited personality has brought me to my knees almost daily. When we had her tested at 3 because of her severe behavior issues in public, we were told she was gifted.

"She's really smart." The doctor told me.  "This will be a real challenge."  She continued.  We did 8 months of play therapy and Lia got so much better...for awhile.

Lia is 5 now.  And while she is bright, loving and determined we have seen a change...or a lack of change, when we thought for sure we would see one.  Her daily tantrums, lies, yelling and screaming in my face, her inability to deal with change, surprises and everyday humor has worn me to a frazzle....

After Lia's diagnosis, I hoped we had a handle on things.  I hoped we were going to be okay.  I hoped I wouldn't have to worry any more...but I was wrong.

Something just didn't sit right.  And for awhile I didn't say anything.  I trusted the doctor...who in the end wasn't wrong, but because Lia was so young, she wasn't able to be complete in her testing.

So, after many weeks of her anger and severe tantrums at age 5, I had to find help....

And today we have just found out that our Lia, while not possessing the syndrome, was diagnosed with borderline HFA or High Functional Autism, which means she scores high on two out of the four criteria that would diagnose her with autism.  She also has and clinical anxiety, along with being gifted.



I feel overwhelmed.

I feel defeated.

I feel tired.

We will take this one step at a time.  I am not completely surprised, but at the same time I feel lost and scared.

Lia has been a challenge for me as a mother.  But I am fighting for her.  And I will always fight for her.

I love being a mother.  But, being a mother has been one of my most difficult trials.

Its funny, getting them here was also one of my biggest trials.... ;)

I would love any comments that may help us.

Lots of love,
Niki