Wednesday, April 17, 2013

A Hard Day

So, you know those days that I have talked about that are just hard and emotionally draining?  Yep, today was that kind of day.  We started Jacob's official evaluations on Monday.  Monday, Cret and I had a 2 hour interview with the evaluation team discussing Jacob and what he can and can't do.  Today the speech and developmental teachers assessed him.  Luckily, Mindy (Jacob's BCBA) came with us because Jacob was not able to do many of their tasks at all.  Mindy was able to show them what Jacob is capable of within a structured learning environment.  The reason we brought Mindy was because she believed that it was likely Jacob would test so poorly that he may be put in the life skills class.  It is still possible that they will put him in that class. The problem with that class for Jacob is that it isn't structured learning and if the children aren't behaving in age appropriate ways, it will only teach Jacob the wrong way to behave.  We are wanting him to be in a SCD (severe communication disorder) class or something similar.  It may not seem like a big deal, but to me it is a huge deal.  Our insurance doesn't cover the therapy that Jacob needs, the therapy that so many research studies have proved to be effective for kids on the spectrum.  Getting him in to a SCD class is our closest thing to actual ABA therapy.  Right now, he gets 4.5 hr/week of therapy.  School is about 15-20 hr/week I believe.  I know those classes aren't 1 on 1 ABA, but we would be so grateful for it, nonetheless.   

In the evaluation they were asking him to match a real cup to a picture of a cup, which he was not able to do.  They also gave him a baby doll and a bottle to see if he would feed the baby on his own or after they asked him to.  He was terrified of the doll and kept throwing it.  He just fixated on the bottle.  They also gave him a top and spinned it to see if he would request them to spin it again.  I was so happy to see that he eventually gave the top to the teacher, however he did not make eye contact or make any gestures to get her to spin it.  He repeated many sounds and words for them which was excellent.  The teacher noted that all of what he said and played was what he had learned from structured teaching.  There wasn't much that he was able to do that hadn't been taught, like pretend play or random words for requests.  She said that it told her that a class with a lot of free time may not be best for him, since he doesn't do anything productive in free time.  He spent some time self stimming.  They did many trials with him to test his abilities.  He kept looking at me and then at Mindy over and over.  I could tell he was uncomfortable and didn't understand what was going on.  He was very scared of a couple of the toys they introduced.  They continued to work with him and  then I went out in the hallway with the teacher and she asked me numerous questions about what he was capable of doing and saying.  That's pretty much when I lost it and started crying.  This is torture for me.  If I am going to be honest, I just don't know how ready I feel for all of this. I don't feel ready to accept that I am a special needs mom and probably will be forever.  I am just so sad right now.  I don't want things to be so hard for Jacob.  I want him to learn easily.  It just feels like something is crushing my chest today.  I am so sad for him and I guess I am feeling sad for me too.  All I could think in that room was, "My poor baby, my poor precious baby, I would do anything in the world to help you.  God please show me how to help him learn."  It is ripping at my heart to watch him struggle with things that are so easy for most people.  I just want to have answers for him.  I want to be able to look at my son without a thousand questions and thoughts running through my mind. 

When I left, I sat in the parking lot and just prayed.  I know that this is a situation that I can't handle on my own.  God has allowed this situation in my life that feels so hard and so heavy.  I am so thankful for that.  It sounds weird, but I know God is showing me right now that I cannot do this without HIM.  It's a reminder that no amount of schooling or mothering or teaching or skills that Jacob learns or anything can bring me true joy or get me through life, except HIM.   I am so thankful that God allows me such obvious situations that remind me that life just isn't OK without HIM.  I also have to remember that the ultimate goal is for God to be glorified.  It is easy to think and say and type, but so much harder to trust and believe and act on as I am going through this.  Please pray for our family as we continue on this journey with Jacob and his placement over the next month.  God knows exactly what's best for Jacob and I am praying for peace no matter what that may be.  I truly believe God has amazing things in store for Jacob's life in order to bring HIM glory. 

Psalm 55:22 Cast your burden on the LORD, and he will sustain you; he will never permit the righteous to be moved.
Philippians 4:13 I can do all things through him who stregthens me. 
1Corinthians 10:13 No temtation has overtaken you that is not common to man.  God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.
2Corinthians 4:16-18 So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal. 
John 16:33 I have said these things to you, that in me you may have peace.  In the world you will have tribulation.  But take heart; I have overcome the world."

I posted a song on my facebook and I wanted to share it with those of you who are not friends with me on facebook.  When I am having a very hard day or sad, I find myself repeating the lyrics "Thank the Lord, oh my soul, thank the Lord".  I am so thankful to be worshiping a God that is so powerful, fathiful, mighty, all knowing, loving, just, and trustworthy.  This song shows me some perspective when I am having a hard day.  Here is the link to hear it...
  For the beauty
For Your goodness
And Your wisdom, awesome God
Praise the Lord, O my soul
Praise the Lord

For You power
For Your honor
And Your splendor, Mighty God
Praise the Lord, O my soul
Praise the Lord

I will worship You
I will bless Your name forever
I will worship You
Bless the Lord, O my soul
Bless the Lord

For Your kindness
For Your favor
And Your mercy, Gracious One
( From: )

Thank the Lord, O my soul
Thank the Lord

For Your fire
For Your testing
And Your Spirit, Holy One
Thank the Lord, O my soul
Thank the Lord

For Your suffering
For Your anguish
And Your sorrow, Humble King
Bless the Lord, O my soul
Bless the Lord

For Your victory
For Your triumph
For Your soon coming reign over all
Lyrics from <a href=""></a>


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