Thursday, October 11, 2012

Depression and divorce overwhelm the ASD community

I've had a lot to blog about lately, but zero time, so I just wanted to write a little update for family and friends that want to know what's happening.  We are about to walk in the Autism Speaks walk this Saturday and I am so pumped.  We met our goal and actually beat it by almost $2000! I had a goal of $2000 and God had plans to double it!  That's pretty amazing.  Jordan had her yearly fundraiser at the local Krogers and we handed out snow cones and raised over $300.  I am so proud of her and her cousins and friends for helping.  Its so awesome to see them working hard and seeing all of this money and being so happy that its all going to charity. 

Jacob has been making tremendous improvements.  He is now mimicking the sounds of songs and simple letters.  He will hum the tune of a couple cartoons he likes and tries to say,"clean up" which sounds more like "keen u", but it is the most precious sound I have ever heard.  The speech therapist said that we are at a very important time in his speech because a lot of children on the spectrum will imitate, but never develop conversational speech.  They call this echolalia. 
Echolalia is the automatic repetition of vocalizations made by another person. It is closely related to echopraxia, the automatic repetition of movements made by another person.
The word "echolalia" is derived from the Greek ἠχώ, meaning "echo" or "to repeat",[1] and λαλιά (laliá) meaning "babbling, meaningless talk"[2] (of onomatopoeic origin, from the verb λαλέω (laléo), meaning "to talk").
Echolalia occurs during human child development, with babies producing vowels, some consonants and echolalia between 6 to 9 months of age.[citation needed] It can also describe a speech disorder in humans with developmental disabilities. (Wikipedia)
You may have seen children that when asked what their name is they reply,"Hi, what's your name?" Instead of actually saying their name.  Also, kids with echolalia can recite entire songs or movie quotes, but can't answer simple questions about their day.  I am confident that Jacob will be able to converse with us.  I am confident that I will hear mommy one day.  He isn't saying anything intentional or to request anything, but it will come. 

His ABA therapist is really amazing and has gotten him used to the PECS system of communication and he can now pick the picture of what item he wants when he is presented with only 2 pictures.  This is so amazing because eventually he will carry around his little book of pictures and be able to tell me when he wants a drink or something to eat.  There are even pictures for "help" and "turn on" and things like that.  I am hoping he will be able to do this by the time he turns 3.  We recently had an episode in a restaurant where Jacob just started screaming in fear and repeating the "g" sound with tears in his eyes and all.  He is not a brat and doesn't ever have temper tantrums, so I was so confused as to what was wrong with him.  He hadn't ever made that sound before.  I may never know what was wrong.  I can only hope that with the PECS system he will soon be able to communicate when something is scaring him or hurting him. 

Tyler, my 3 year old, is becoming irritated and restless when the therapists come.  They usually come with a big bag of toys and he isn't allowed to participate because he hogs all the toys and totally intrudes on therapy time.  I am trying to decide how to handle this.  I don't think having my own bag of toys will do, since part of the problem is that a visitor is bringing them and that is special to him.  I think I may ask a friend to come over maybe once or twice a month with a bag of toys to just play with him for a few minutes.  I am trying to figure out what would be a good way to make him feel special.  Jordan, my daughter, is another story.  She is so special, so caring, and so loving.  She handles Jacob with such sensitivity.  I truly believe that the Lord is using this situation to change her life.  Well, I believe it is changing our whole family.  Although it may seem like it, we do not focus on Jacob and autism all day every day.  I have 3 kids, I home school, I have 2 Bible Studies that I am in outside of church, we have AWANA, children's church choir, Jordan's soccer, Cret's soccer, I have school, and we have lots of family time.  Whew....that is a lot on my plate.  I feel overwhelmed a lot, I have to admit.  I just can't imagine how people do it without leaning solely on Jesus for strength.  I know I couldn't do it.  If my focus was all on Jacob I think I would become depressed, irritable, and anxious.  Its scary and stressful to have a child with a disability.  I heard a preacher on TV say,"The problem with having all of your focus on your circumstances is that you're always in them."

I am so thankful for so many things, but most of all that this diagnosis has brought our family closer together, rather than pulling us apart.  I am now working on my Master's in ABA and in doing so I have had to read about a gazillion research articles.  Many of them focus on depression in moms with children on the spectrum and the divorce rate of parents with children on the spectrum.  The emotional toll on the family is intense.  There is constant therapy, constant doctor visits, constant judgements from others, constant care, constant teaching, constant correcting, constant embarrassment, constant feelings of guilt, and the list goes on.  I have decided to take a stand against this statistic.  I know it sounds silly, who wants to stand "pro-divorce" or "pro-depression"?  Obviously no one, however, it happens to moms and to families and it happens often.  Can I say that my priorities are always where they need to be? No.  Can I say that I don't get run down by the pressure and stress and sadness that accompanies ASD?  No.  However, I am taking a stand against these things.  By taking a stand I am going to be on guard in every way.  How will I do this?  I am going to keep Christ as my main focus.  I am going to arm myself with God's truths, so that I am prepared to handle situations as they arise.  I am going to take my negative thoughts captive.  When you understand your emotions, you can change them.  You are in control of your feelings, your feelings don't control you.  I will transform this diagnosis into something that can bring Glory to God.  Autism can benefit our family and other families and I will work hard to help my son in any way that I can.  I will honor God and Jacob by focusing on my relationship with Christ and my marriage and keeping it strong first and foremost.  I want to encourage you to do the same.  I want to encourage you to take a stand against these statistics.

Here are some truths that keep my priorities Christ, instead of autism and Christ instead of despair:

 Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

(Romans 5:1-5 ESV)

 What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,
 “For your sake we are being killed all the day long;
  we are regarded as sheep to be slaughtered.”
 No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

(Romans 8:31-39 ESV)

 So, whether you eat or drink, or whatever you do, do all to the glory of God.
(1 Corinthians 10:31 ESV)

And he said to him, “You shall love the Lord your God with all your heart and with all your soul and with all your mind. This is the great and first commandment. And a second is like it: You shall love your neighbor as yourself.
(Matthew 22:37-39)

  I appeal to you therefore, brothers, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.

(Romans 12:1-2 ESV)

Please join me in prayer for all the families struggling with depression and marriage problems. 

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