Sunday, December 8, 2013

How can someone say autism is a blessing?


How can I say that autism is a blessing? This issue does cause tension for some special needs parents. Some say autism is horrible and they wouldn't wish it on anyone, some say not to get therapy and let the child be who they are and yet others say autism is a blessing. People say it so often about hard issues that it sometimes sounds very cliche. You always hear, "You never know what God has planned".

 But that's not why I say autism is a blessing. I say it because I truly believe everything boils down to purpose or the end goal. What's my purpose? What is the end goal for Jacob, our family, our lives? I guess from a typical perspective the end goal should look something like Jacob being able to speak, learn, eventually be in class with his peers, go to college, have a nice job and marry. While all of those things are wonderful, that is not our family's primary end goal. Our end goal is to give glory to God in all that we do and to try to honor God by spreading the Gospel. We are not perfect and we most definitely do not live up to this all the time.  However, our goal is to let God use us in whatever ways He chooses to bring people into a saving relationship with Him. I feel humbled and honored because recently the Lord answered a deep desire of my heart. It's been a while now that I have been praying for God to use our situation as a special needs family and Jacob for His glory. I've prayed for God to use our situation and that if even one person hears about the Lord or comes to Christ through this autism journey it's all worth it. No, it's not fun, it is not easy and I wouldn't wish autism on any child, but if God can use it then I want to be at peace with it fully.  Several weeks ago a woman accepted Christ in a special needs Bible Study that I attend. There are no words to express how amazing it is to see someone accept Christ, especially someone hurting and knowing that their life will change in such profound ways. On that day God not only saved her, but he gave me a gift that I can hardly even think about without crying. He showed me the end goal. Instead of just praying about it and thinking about it God showed me right in that very room that even autism can unite people together where the Gospel can be shared and Christ received. Although she received the greatest gift that day I can't help but to get on my knees and thank the Lord for allowing me to see that. That is exactly why I can say autism is a blessing. It not only opens our eyes to the wonderful gifts that special needs people have and the need  that is out there for these families, but it opens doors to share Christ's love and peace and joy in situations where it is extremely hard to find happiness.  I can honestly say that most special needs parents feel that there is little worse than watching your child suffer or watching your child struggle with things that would normally be very simple and easy for others.  Autism is not what I want for Jacob.  Everything in me wants Jacob to be typical.  Everything in me wants Jacob to be able to easily communicate and be safe physically.  However, my prayer is that I can have a devoted surrender (as my Pastor put it today) of my life to the Lord, even in my desires for my child.  I want to have a heart that is willing to grant permission for the Lord to use my family, even my child, in whatever way brings the Father glory. I don't feel that this means not helping my child in every way that I can, but it does mean having a thankful heart and a heart willing to use Jacob's autism for bringing glory to God.  It means setting my desires for things that are for God.  My priorities often get a little out of whack.  This is my prayer...
"If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. 2 Set your minds on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God."  Colossians 3:1-3


1 Peter 3:14-15 says," 4 But even if you should suffer for righteousness' sake, you will be blessed. Have no fear of them, nor be troubled, 15 but in your hearts honor Christ the Lord as holy, always being prepared to make a defense to anyone who asks you for a reason for the hope that is in you; yet do it with gentleness and respect"

There are so many special needs parents, grandparents and children hurting and lost and without hope and there is an answer for them.  Real joy and hope come from Jesus and Jesus alone.  It doesn't come from anything that I do, it doesn't come from more education or therapy or new skills Jacob learns.  I say autism is a blessing because Jacob and his autism allow me to relate to other parents and show them there is still an immeasurable joy in my heart despite these challenges through Jesus and nothing else.

Jesus declared in Matthew 11:27-30, " 27 All things have been handed over to me by my Father, and no one knows the Son except the Father, and no one knows the Father except the Son and anyone to whom the Son chooses to reveal him. 28 Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.”

We all sin. Romans 3:10-12 says, "10 as it is written:“None is righteous, no, not one;11  no one understands;no one seeks for God.12  All have turned aside; together they have become worthless; no one does good,not even one.”


Our sin separates us from God, who is perfect and without sin. Romans 6:23 says,"23 For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord."

 Jesus' death, burial and resurrection was the perfect sacrifice to reconcile us with the Father and all we have to do is repent (acknowledge our sin, to be sorry and turn away from it) and allow Jesus to be The Lord of our lives and accept this free gift. Romans 5:8 says,"but God shows his love for us in that while we were still sinners, Christ died for us." Romans 10:9-10 says,"because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved. 10 For with the heart one believes and is justified, and with the mouth one confesses and is saved."

Once we accept Jesus, the Holy Spirit lives insides of us and we get to live an eternity in Heaven with God. It's so amazing to know the purpose of life. It's amazing to know the joy that only comes when you are free from the bondage of sin and living with a personal relationship with the creator of the universe. You are no longer dead in your sin, but alive in Christ.

I had to share my journey because I have been so touched to have witnessed it. I am so thankful to God for granting me the gift of seeing someone accept Christ through a special needs ministry. It's not that I didn't believe or think it could happen, it happens anywhere. I'm just so grateful. Praise The Lord from whom all blessings flow. God is so good.


Psalm 34
I will bless the Lord at all times;
    his praise shall continually be in my mouth.
My soul makes its boast in the Lord;
    let the humble hear and be glad.
Oh, magnify the Lord with me,
    and let us exalt his name together!

I sought the Lord, and he answered me
    and delivered me from all my fears.
Those who look to him are radiant,
    and their faces shall never be ashamed.
This poor man cried, and the Lord heard him
    and saved him out of all his troubles.
The angel of the Lord encamps
    around those who fear him, and delivers them.
Oh, taste and see that the Lord is good!
    Blessed is the man who takes refuge in him!
Oh, fear the Lord, you his saints,
    for those who fear him have no lack!
10 The young lions suffer want and hunger;
    but those who seek the Lord lack no good thing.
11 Come, O children, listen to me;
    I will teach you the fear of the Lord.
12 What man is there who desires life
    and loves many days, that he may see good?
13 Keep your tongue from evil
    and your lips from speaking deceit.
14 Turn away from evil and do good;
    seek peace and pursue it.
15 The eyes of the Lord are toward the righteous
    and his ears toward their cry.
16 The face of the Lord is against those who do evil,
    to cut off the memory of them from the earth.
17 When the righteous cry for help, the Lord hears
    and delivers them out of all their troubles.
18 The Lord is near to the brokenhearted
    and saves the crushed in spirit.
19 Many are the afflictions of the righteous,
    but the Lord delivers him out of them all.
20 He keeps all his bones;
    not one of them is broken.
21 Affliction will slay the wicked,
    and those who hate the righteous will be condemned.
22 The Lord redeems the life of his servants;
    none of those who take refuge in him will be condemned.


Tuesday, September 24, 2013

Sweet sweet little guy

video
Jacob has really been learning so much in therapy lately.  It amazes us how far he has come with only 4.5 hours of therapy per week.  It really makes me wonder how much he would be learning if he had full time ABA.
Earlier today I was looking back at previous blog postings and found some posts in which I believed Jacob had autism at around 10-11 months! For some reason I had forgotten that it was that early.  I always tell people that I realized it around 15-18 months.  You know, this gives me a lot of hope. If the early warning signs can be shared with as many people as possible, then intervention can begin as young as 1 year old.  Research shows that early intervention is key.  No longer is it ok to take the wait and see approach.  Early intervention cannot hurt a typical child.  It will help anyone, including typically developing children.  I just wanted to encourage you to always share early warning signs and red flags with anyone who may suspect autism.  If we hadn't begun early intervention when we did, there is a significant chance that Jacob would still be non-verbal and not gaining the critical skills that he has learned through therapy.  Jacob is still considered severe, but I am so incredibly thankful to God for how far he has come. 






We had family pictures taken by a sweet friend.  She is so talented and able to capture the cutest pics of Jacob, even with him moving and running around at 90 mph.  She chases after him and catches the sweetest smiles.  Of course, my other two are naturals.
Today I am making it a point to pray and thank God for our many blessings.  Of all of those blessings I am so so thankful for a such a lovable little guy.  I am thankful for his sweet nature.  I am so thankful that he snuggles and hugs and kisses.  Praying today for those families with autistic children that do not like to be held.  I can only imagine how you must feel.  I pray that your little one can learn to show you how much they love you in their own special way.  How about today we all take a moment and pray with full thanksgiving in our hearts to the Lord and Creator of our children, for everything they are and for his perfect plan in our lives.  Let's give thanks for our special children, our typical children and our children in heaven. 

http://www.youtube.com/watch?v=RWJLy3-iRQo
Matt Redman

"10,000 Reasons (Bless The Lord)"
[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore

[Chorus x2]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

Jesus, I'll worship Your holy name
Lord, I'll worship Your holy name

Sing like never before
O my soul
I'll worship Your holy name
Jesus, I'll worship Your holy name
I'll worship Your holy name

Tuesday, September 10, 2013

Much to consider



WOW! A lot has been happening lately.  Jacob has begun special education.  So far, it is going really well.  Every day I pick him up and he is humming or trying to sing the songs that he has learned in school.  His verbal imitation is really improving.  He will imitate most anything you ask him to say and some common phrases.  I have attached a video of him trying to say "I love you, Mommy" with my husband prompting him by not letting him flip until he says it.  It is so precious to hear these words.  I can't wait until he knows what he is saying and actually says it to ME! They have begun potty training him at school and are currently working on getting him to sit still for a short amount of time during his school work or lunch at a desk.  We are also still receiving ABA 3 times a week, which of course is amazing for him.  I am hoping that somehow we can get him more ABA soon.
video

Man, I have had a lot on my mind lately with all the new changes.  With Jacob beginning special ed and his stimming increasing it's all seeming a little more real... I don't know why, but sometimes I feel like I am on a emotional roller coaster regarding Jacob's needs.  Sometimes my heart (my emotions) seem to take over what I know to be truth.  The other day I was thinking about when Jacob was an infant and everything I did (or didn't do).  I was considering things that I should have done differently and once again I got that feeling in the pit of my stomach.  There's absolutely nothing like it.  It's an absolute desperation to just go back in time.  If I only had those infant years back.  It literally made me feel ill.  I was telling my mom about it and just started crying.  What I wouldn't do to help my little guy.  Why didn't I realize then that something was wrong?  Why was I sleeping so much?  Why didn't I try to force eye contact, etc?  I hear this a lot from special needs moms.  There is a guilt that sometimes takes over, even when you know you couldn't change the outcome.  But I realize I have to be really careful when these thoughts arise.  I keep condemning myself.  Over and over in my life I struggle with who I was or what I have done.  A person like me, with my past, has a lot that can creep up to haunt me.  What I could have done differently with Jacob is no exception.  Sometimes thoughts of my past keep me up at night.  As I was reading in one of my Bible Studies I came across a verse...

By this we shall know that we are of the truth and reassure our heart before him, for whenever our heart condemns us, God is greater than our heart, and he knows everything. 1 John 3:19-20

When I surrendered my life to the Lord he forgave me.  All of my past is forgiven.  All of it, and he knows everything.  If you asked the Lord to rule over your life and repented, then all of your past is forgiven.  Whatever you may have done, could have done or should have done does not need to burden you.  You don't need to even forgive yourself, because the Holy creator of the universe already knows all and has forgiven you.  Its so wonderful to know that no matter how strong my emotions can be, God is stronger.  That's amazing to remember when I get down on myself.  I trust that God's word is TRUTH and because I do I need to trust that all is forgiven.  Obviously, learning from mistakes is important.  Living in the past, however, is not productive or helpful.  

Again, in a similar way, I sometimes find myself praying so hard for the Lord to heal Jacob.  I pray while crying out to God to heal my baby.  I pray for Jacob to have the ability to learn like other kids, to speak like other kids, to play like other kids, to eventually be able to live on his own or to get married.  I pray for God to take this cup from him, from us.  But again, I read in his word that there are things that are bigger than us and our comfort of living.  I remember I need to be praying that if its in Gods will that he heal Jacob, but if not, if God can use Jacob's autism for something that could enhance HIS kingdom then to guide me and use us for spreading HIS good news and love.  If Jacob's autism can be used by God to glorify himself than I pray that God will use it and continue to forever.  How incredibly hard it is to keep reminding myself that my will may not align with Gods.  I have to surrender my will and trust HIM.  God has a better plan for us than I ever could.  I need to be in constant prayer that I can see Gods will for us and the path he wants us on instead of constantly focusing on prayer to heal Jakey.  I will continue to educate myself and to help him learn in all the ways that I can, but I want to clearly see what God would have for us and that is done through reading Scripture, prayer, and fasting.  Have you considered asking God how he can use your child and your situation for His glory?  God is so mighty and so just and so loving.  

Remember not the former things, nor consider the things of old. Behold, I am doing a new thing;  now it springs forth, do you not perceive it?  I will make a way in the wilderness and rivers in the desert.  
Isaiah 43:19-20

God will make a way for you, even when it seems so hard and painful, God will make a path and quench your thirst.

Thursday, May 23, 2013

How do my other kids respond to Jacob's needs?

video

Jacob has made some awesome progress lately in therapy.  He is repeating so many words, sometimes they aren't very clear, but he is definitely trying to say specific things.  In Jacob's room he has 3 little bags with the numbers 1, 2, and 3 on them.  He was stimming pretty badly on them during therapy so Mindy decided to turn them into a functional game where she turns them around so he can't see the numbers and then asks what number he wants.  When he says the number she turns it around so he can see it.  He loves this game.  He also repeats YAY and then says DO IT AGAIN.  He is doing so awesome.  So yesterday Mindy asked me to print out number flashcards.  I haven't started to work on numbers with him yet because he still doesn't even request food or toys or me on his own. It just never occurred to me to start with number flashcards while we are still working on flashcards with my picture on them and him identifying it as mommy.  Regardless, I printed them out and today after therapy she came downstairs and said,"Allison, Jacob knows all the numbers 1-10 receptively and expressively.  I put them in an array of 10, 5 at the top and 5 on the bottom in random order and asked him to give me specific numbers and he got them right every single time and said the number (in his own way of course)."  UMMMM....Oh My Gosh! That is so awesome.  Praise the Lord for how far he has come!  He is associating words with meanings and I know its only a matter of time before he can start requesting his other wants and needs and having spontaneous speech.

I wanted to share something that has been on my heart lately.  A sweet friend asked me if my other kids ever get upset because of all the attention Jacob gets.  I think this is a valid question.  This friend is very smart, so I know if she is curious about this many others may be.  Not only that, but how do we (special needs mommies) split up our time so that all of our kid's needs are met?  Well, its not a simple answer.  If I am being totally honest, yes there are times that Jordan or Tyler get upset.  For a while Jacob was having 3 different therapists coming to our house, all with special toys that only Jacob would play with for therapy.  Tyler was getting pretty upset.  So I reached out to friends for ideas and we came up with the idea to have an extra special bag filled with fun toys that I would give to one of Jacob's therapists (to take home with her) and she brought it just for Tyler each time she came.  Sure, it isn't the exact same thing as someone coming and spending time alone with him, but he was happy that he had a special bag of toys each week.  When we have fundraisers, I often let Jordan decide how we are going to do them.  I always assign her to be the one that talks to people about why we are raising money, so that she can take ownership of the hard work and knowing that the money she earns is to help others.  I let her talk about how autism affects her and her baby brother.  I really believe in educating Jordan on everything, age appropriately or when needed.  We don't just talk about God with her, we explain who Jesus is, what He did for us, the desperate need to share the Gospel message with others, why our sin is so serious, and what people in others countries are dealing with.  Likewise, I share with her all about autism.  She knows why Jacob sometimes needs more attention and she definitely knows its not because I love him more.  Our family is just different.  It will always be different.  Because Jacob has super high maintenance needs, we can't afford to put Jordan on the competitive soccer team we all wanted so badly, but Jordan is so compassionate she would never expect that over giving Jacob therapy.  I feel that this is because we are in constant communication about our family and  in constant prayer.  God has given her compassion in a way that I have never seen.  We also feel strongly about not making our family life revolve around our children.  This includes Jacob.  Jordan knows that there are things in the world, many things, that are bigger than her.  I don't tell her this in a mean way or in a way to break her spirit, but in truth.  My kids are so incredibly precious to me, but I also know that its easy for kids to get wrapped up in their own life and for parents to get wrapped up in their children's lives and eventually kids can have that strong sense of entitlement that I had for so long.  Cret and I put God as our first priority and our first love.  Next, we hold our marriage higher than anything else.  I know that our strong marriage will make a huge impact on our family functioning.  We always sing and dance and laugh and giggle with all of our kids.  The only time things look a little different is during therapy sessions when Jacob gets my full attention.  Sometimes I think because this blog is all about Jacob or because I post autism facts on facebook that people may think that our family is all about autism or that all I do or think about is about autism.  Well, autism is a big factor in our family...we can't do a lot of things due to Jacob's special needs, but in our day to day life Jacob, Tyler and Jordan all get about the same attention.  Like my sister told me one time, if one leg is broken you don't put a cast on both legs.  Similarly, as each child has a need or a want for snuggles or attention or schooling, I meet that need.  Jacob just tends to have more needs sometimes and I have to adjust our family because of that.  It is a very difficult balance, but I pray everyday about keeping my priorities in line.  God is my number one, Cret is number two and my kids are more important than anyone else on the planet after that.  That's how I try to make this thing work.  None of this, of course, can be done without The Holy Spirit leading  us and without prayer.  Before I gave my life to Christ, my life as a single mom did revolve around Jordan and myself, but I can tell you neither I nor Jordan were happy or satisfied with that life.   There were many observations from other family members that Jordan was quickly becoming very self absorbed.  One of the many blessings that Jacob has brought into our family is that we have grown to become less self-serving and more others-serving, and even Jordan being only 10 realizes how this has enriched our lives.  She sees that this aligns better with the will of God.  We are called to know God, love God and serve God and because of what the family has learned just with having Jacob and having to meet the needs of Jacob, it has made it easier for us to serve God.  For us, it has been easier to serve God because we are in the mindset of others-serving and not self-serving.  This is what I pray for Jordan and Tyler.   I can see how this is developing Jordan and allowing her to look through a different lens.  Jordan actually seeks out opportunities to help others and to make others happy.  I can see her slowly becoming more servant minded and I know that the Holy Spirit is growing her.  I really had no idea what to do or how to be a parent until I started learning about how God views family and my role as a wife and mom and honestly I am still learning every day.  There are things that I hear my Pastor say sometimes that I am thinking, "DUH, why didn't I or why don't I do that already?"  Man I have a long long way to go and I am not getting everything right.  I am learning and growing as a parent as I am learning and growing in my relationship with the Lord.  But, to go back to the original question... I guess sometimes Jacob does need more of my attention, but I wouldn't have it any other way and neither would my kids.  I thank the Lord everyday for my family exactly as it is.  Its surely isn't easy, but man does God know what He's doing! Praise the Lord for being so sovereign and just and holy and trustworthy. 

Rejoice always, pray without ceasing, give thanks in all circumstances; For this is the will of God in Christ Jesus for you.  1Thessalonians 5:16-18

3 Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. 4 Let each of you look not only to his own interests, but also to the interests of others.
Philippians 2:3-4

Amazing Grace
Amazing grace! How sweet the sound
That saved a wretch like me.
I once was lost, but now am found,
Was blind, but now I see.

'Twas grace that taught my heart to fear,
And grace my fears relieved.
How precious did that grace appear
The hour I first believed.

Through many dangers, toils and snares
I have already come;
'Tis grace has brought me safe thus far
And grace will lead me home.

The Lord has promised good to me
His word my hope secures;
He will my shield and portion be,
As long as life endures.

Yea, when this flesh and heart shall fail,
And mortal life shall cease,
I shall possess within the veil,
A life of joy and peace.

When we've been there ten thousand years
Bright shining as the sun,
We've no less days to sing God's praise
Than when we've first begun.




Sunday, May 5, 2013

DECODING AUTISM

 
Decoding Autism In Our Home

Parenting a child with Autism is often very challenging, but the reward that it yields far exceeds anything that I have ever experienced.   My son, Jacob, has severe autism and speech and language disorder.  He has very little functional speech and does not like contact with most people.  Jacob shakes his heads rapidly and often needs deep pressure to calm down.  He spins in circles and is fascinated with climbing inside of cabinets.  We often find him walking backwards in the house rolling his arms in front of his face and making strange noises.  Sometimes we catch him staring at doorknobs or running in circles around the sofa in peculiar patterns.

Jacob has a very hard time expressing his wants and needs, even non verbally.  Each day he works with therapists to learn simple noun identification and commands such as “sit” and “clap”.   Each morning my oldest two children and I dance and sing “I Love You So Much” for Jacob while he eats breakfast.  Jacob’s therapist gave us songs with common phrases in order for him to learn them.  This has become a wonderful morning routine for our family.  If I forget to sing, my big kids always remind me, “Mommy, we didn’t sing the I love you song for Jakey yet”.  This has become a very special tradition.  As we spend time with Jacob, we often find ourselves having to “decode” what Jacob is trying to tell us.  Jacob’s language consists of humming and making noises to the tunes of songs or things that he hears us say.  If I tell Jacob “good boy” he says, “ooo oiy” in the same tune.  We find that if we get on his level and pay attention to him closely, sometimes we can understand what he wants.  It’s amazing to witness my other kids patiently and compassionately trying to understand Jacob and play with him in his own unique way.  As a mom I find that it is so important to take the time to love each of my children in the way that they need to be loved, even if that means “decoding” a different language.  For our family, loving Jacob means learning his “language of autism”. 

It reminds me of God.  God loves us in such a perfect way.  As much as I love Jacob and would go to the ends of the earth for him, my Father in Heaven loves him more.  He knows every thought in his mind and every word or utterance on his tongue.  What a relief that is to me.  I don't have to figure it all out.  Thank you, God, for knowing Jacob more than I ever will and for loving Jacob more than I ever could.  I pray that you can guide me on how to teach him all about YOU.
 
Psalm 139

1 O Lord, you have searched me and known me!

2 You know when I sit down and when I rise up;

    you discern my thoughts from afar.

3 You search out my path and my lying down

    and are acquainted with all my ways.

4 Even before a word is on my tongue,

    behold, O Lord, you know it altogether.

5 You hem me in, behind and before,

    and lay your hand upon me.

6 Such knowledge is too wonderful for me;
    it is high; I cannot attain it.

 7 Where shall I go from your Spirit?

    Or where shall I flee from your presence?

8 If I ascend to heaven, you are there!

    If I make my bed in Sheol, you are there!

9 If I take the wings of the morning

    and dwell in the uttermost parts of the sea,

10 even there your hand shall lead me,

    and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
    and the light about me be night,”

12 even the darkness is not dark to you;

    the night is bright as the day,

    for darkness is as light with you.

 

13 For you formed my inward parts;

    you knitted me together in my mother's womb.

14 I praise you, for I am fearfully and wonderfully made.[a]

Wonderful are your works;

    my soul knows it very well.


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...
http://youtu.be/MtAmlO4cdhc
  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: http://www.elyrics.net )

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="http://www.elyrics.net">eLyrics.net</a>





 

Friday, April 12, 2013

Autism across the lifespan


In one of my courses, we had to look over a large document about evidence based practices and autism in schools. I came across a section listing the symptoms of autism in all ages.  Most students commented in our class discussion by stating that they feel it is unethical for practitioners to tell parents that their child's autism will go away because it usually does not.  Most people associate autism with specific symptoms, usually those associated with early childhood and when those symptoms are no longer noticeable they hope that their child is cured or others assume the child is no longer autistic.  More often than not children do not outgrow their autism and this particular section discussed the symptoms in older ages.  Obviously, classic autism is still very severe and noticeable in older years, some of these symptoms are the ones that people don't always associate with autism.  Reading it took my breath away.  I, too, try to tell myself that Jacob will grow out of his autism or that his ABA therapy will eventually cure him.  I don't even need a doctor to tell me that, I just want to believe it. I do not think anything is impossible through God, but I trust that God's plan for Jacob is bigger than my own desires. What I want and hope for, may not be what happens.  Either way I will trust Jacob's perfect creator and know that whatever is in store for him is God's perfect plan for him and for our family.  Its hard to see how God can use this situation for His glory if I am in constant turmoil over it.  I want to be informed about what Jacob's future may look like so I am prepared to help him and be the best, most supportive mommy I can be.
 
 I wanted to share the information about "Autism across the lifespan" for parents and others to be able to read and to be aware of.  Also, I feel like there is such a lack of information in the media about autism and older kids and adults.    I must also state that every person with autism is a unique individual.  Some children may lose their autism diagnosis altogether and some may not.  I don't want this to be a discouragement to ASD moms, but more of a reference and possibly a preparation.  If your child had any illness, wouldn't you investigate what would happen and how to appropriately handle the situation?  I suppose that is how I feel about being educated on autism.  I am preparing myself to mother a child with autism for his lifespan, while hoping and praying that there is a possibility that he may lose his diagnosis.  My prayers go out to each and every ASD mom. 
 
This is very basic information on some of the symptoms of autism across a lifespan...
 
} Evidence-based Practice and Autism in the Schools



Autism Across the Lifespan
The symptoms exhibited by a student with ASD may change over time. A
child who receives speech services at age 3 may face very different communication
challenges by the time she reaches her high school years.
Each developmental stage brings its own challenges for all children, and this holds
true for students on the spectrum. You are more likely to see certain symptoms in the
toddler years, but these symptoms may be extremely subtle or non-existent by the
time the student reaches adolescence.
This pattern of development can be very confusing for individuals unfamiliar with the
autism spectrum because they expect the same symptoms to remain fairly constant
over time. In fact, some of these individuals may doubt whether an ASD diagnosis is
warranted due to preconceived notions about what a student with ASD should “look
like” at certain ages.
Table 1 lists some of the various challenges that students with ASD may face across
the years they are served in the schools. It includes an overview of symptoms commonly
observed at different stages in a student’s life. We recommend sharing this
information with colleagues who may have less experience working with students on
the autism spectrum.

 
National Autism Center
 
Domain
Age
Symptoms
 
Social
 Development
Infant/Toddler
•May avoid touch
•May isolate from groups
•An infant may not imitate facial expressions
•Toddlers may not laugh in response to parent’s laughter
•Failure to respond to the emotional needs of others
 
Early School Years
•May not engage in social games
•May prefer younger children
•May appear “bossy” when playing with other children
 
Adolescence/
Early Adulthood
•Gaps in social skills become even more apparent
•Dating challenges
•Social challenges sometimes related to issues such as poor hygiene (e.g., rigid adherence to rules
regarding frequency of bathing)
 
Communication
Development
Infant/Toddler
•May lack speech
•Immediate or delayed echoing of other’s words
•Use of scripted phrases
•May not respond to name
•Unlikely to use gestures
 
Early School Years
•May sound like “little professors” who are lecturing on a topic
•Conversations are one-sided
•May not see how their behavior hurts others
 
Adolescence/
Early Adulthood
•Poor understanding of abstract concepts
•Challenges in understanding jokes or slang
•May mimic language from television or movies, placing them at risk for problems at schools (e.g.,
say “I’m going to get a gun and kill him” as a means of expressing anger or frustration)
 
Restricted,repetitive, nonfunctional patterns of behavior, interest, or activity
 
Infant/Toddler
•Repetitive motor movements like hand-flapping, finger flicking, rocking, etc.
•May line up toys for visual examination
•May categorize toys instead of playing functionally with them
•Some rigidity in routines
 
Early School Years
•Rule-bound
•May create own rules to make sense of the world
 then have a hard time managing when others violate these rules
 
Adolescence/
 Early Adulthood
•May engage in elaborate rituals to avoid motor tics
•May obsess for hours about a brief encounter with a peer
 
Other
Infant/Toddler
•Tantrums
•Sensitivity to light or sound
•Feeding challenges (often associated with texture)
•Safety concerns (e.g., may run outside in bare feet into the snow)
 
Early School Years
•Academic concerns
•Difficulties with concentration and irritability due to sleep or communication problems
•May be disruptive during transitions
•May be clumsy in sports activities
 
Adolescence/
Early Adulthood
•Symptoms of depression or anxiety
•Acting out
•May not understand rules regarding sexual behavior (and may be set up by peers to violate these
rules)
•Increased risk for seizures (associated with onset of puberty