Thursday, May 23, 2013

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

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 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.