Friday, December 7, 2012

Faith

 
Faith.  We hear it a lot, but what does it mean?  In church the other day we were hearing about Mary.  She was about 16 (possibly younger) when the angel appeared to tell her she would give birth to the Savior of the World.  She was already engaged, still a virgin, and she knew what this would mean.  It makes you wonder if she even thought about the consequences.  People would stare at her.  People would judge her.  People would falsely accuse her of adultery.  What would Joseph say?  All of these things could have been running through her head.  Can you even imagine in today's society how fast that news would spread?  Yet what was her reaction to this news?  It wasn't worry, it wasn't hesitation.  The Bible says... "And Mary said," Behold, I am the servant of the Lord; let it be to me according to your word..." Luke 1:38
 
WOW! She expressed her dedication to God and to His will in her life no matter what that meant.  She also said a beautiful song to the Lord later in the chapter.  Her love and devotion to God was apparent through her faithfulness.  Her mature and bold faith is something that is very special.  It got me to thinking about my faith.  I think that I have it, but is my life an example of a faithful woman?  Would my legacy be of someone who had great faith?  I am not sure if that is the way I am viewed or not, but I want to live out a faith that can not be shattered by my circumstances.  Sometimes, my emotions seem to take over my life.  I have to put a stop to that.  I am in control of my emotions, not the other way around. 
 
The other day a therapist came over.  She is new to Jacob and we started signing all the paperwork to get the ball rolling for enrolling him into special education within the public school system.  Children start at 3 years old when they are disabled or have special needs.  She told me that recently one of her severely autistic nonverbal kids was only approved for speech therapy 2 times a week for 30 minutes.  This was beyond upsetting news to me.  I had planned on Jacob entering school 5 days a week for a few hours per day.  We can't afford the therapy he needs and this was to be one of the most important things that he could ever be in at this age! Then it started....PANIC. He NEEDS this therapy, he NEEDS this education.  What will we do if they don't accept him?  I kept thinking, "I will hire a lawyer, that's what! I will hire 3 lawyers!" I kept imagining all the "what if's" in my mind and how I would react.  Then I realized that my worry, my panic, my fear, was the exact opposite of having faith.  I need to be prepared, educated, and ready to fight for my sons rights, but I need to trust God in this situation. I need to live a life of joy and peace, not fear and worry.  What can we do in times like this?  Remind ourselves that God is holy.  God is wise.  God is just.  God is sovereign.  Nothing happens without God allowing it to happen.  So with this I will pray that God's will be done in Jacob's life and that whatever the plan is for Jacob that I will remain faithful. 
 
1 Corinthians 10:13 says...
"No temptation 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 to able to endure it."
 
I need to prepare my heart for these ups and downs with Jacob and his journey.  I need to be on guard at all times so that I don't give in to fear and panic.  I need to prepare my heart by studying God's Word and praying for guidance for our lives.  I need to do all this while giving thanks for the many blessings that God is giving us each day. 
 
BLESSINGS:
Jacob has been using his PECS (Picture Exchange Communication System) very well in therapy and has translated it into the real world quite well, so far.  He will request pizza, milk, certain toys and so forth.  He still sometimes just wants to play with the cards and chew on them so we are working on making it just a form of communication and not a toy.  If any moms have any advise on this please pass it on.  He also is mimicking so many words, songs, and phrases! Anything that is in the form of a song he will try to repeat in his own cute way.  I don't know that many people on the outside would understand what he is saying, but I can recognize it by the tune.  It is very precious.  He played pretend the other day with Jordan, which was huge! She was vacuuming and he got his popper and rolled it around making a vacuum sound.  He also insists on Tyler chasing him around with the popper.  He asks him to play it with him by pushing the popper in Tyler's face and screaming.  ha ha Tyler likes it though and chases him all around.  I love this sweet little family.  I love how much progress Jacob is making with ABA therapy.  He has also mastered his first 24 piece jigsaw puzzle where the picture is not given on the board.  Its even difficult for Tyler to do, but Jacob does it with no problem.  I will be getting him some harder puzzles soon.  Anyways, these are all things that I am so so thankful for. 
 
Most of all this holiday season I am thankful for God sending Jesus to die on the cross to pay the penalty of sin.  God is perfect and our sin separates us from Him for all eternity.  If we believe  and confess Jesus is the Lord over our lives and repent than we can be reconciled to the Father and spend our eternity in Heaven. 
 
 If you would like to know about having a relationship with God please email me.  I know how hard it can be raising a child with ASD.  I know the confusion and despair.  I can relate to some of  the challenges that you face daily.  I understand that the future holds so many questions when you have a child with a disability.  So much seems uncertain.  I can tell you one thing for certain, though.  When you have a relationship with Jesus you CAN be certain of the future.  If there is one thing I want for my son it is for him to know and love Jesus as much as his mind will let him.  I will settle for nothing less. 
 
 
 
 


Thursday, November 8, 2012

Be informed, be proactive

Jacob has been engaging in some silly behaviors lately and I wanted to post them.  Every time he hears a loud noise or a song that makes him excited he stops whatever he is doing and stands up and starts running in circles as fast as he can.  When he hears the vaccuum he smiles and follows it all around the house.  He hugs the air vent and listens to it for long periods of time, no matter how much we pull him away from it.  He follows his shadow around the house and sometimes holds his own shadow's hand.  He mimics some tunes of songs that he hears on the tv by humming them.  He is now officially requesting the IPad by saying,"I I I".  YAY! He can't handle different foods touching each other on his plate, he always seperates them and when he is done he always throws the rest of the food on the floor.  If you hand him a ball, he will immediately run to a hard floor to drop it to hear the sound it makes.  He walks backwards while rolling his hands really slowly in front of his face.  He plays the IPad with his feet, even including puzzles.  Whenever he runs, he takes super fast tiny steps and it looks so hilarious.  He always takes off running the moment he sees his therapist.  He is so special and makes us laugh so much.  I just wanted to have these silly moments that our family loves so much posted to remember. 

I have run across a few situations lately in which very well meaning friends of mine feel that a child they know is on the spectrum, but that their parents have no idea.  They weren't telling me in a gossipy sort of way and never mention names, but they are genuinely concerned about whether they should mention anything to the parent.  They don't know if they should tell them or not.  This is a difficult topic for me, in particular.  Do I think the parents should be made aware?  YES, absolutely.  Is it an easy thing to do? No way.  Some parents take it personal.  Some parents who have children on the higher end of the spectrum believe their children are gifted because of their above average language skills and have a hard time accepting the diagnosis.  Even in my text books it states that many parents that have the hardest time accepting the diagnosis are the ones with children with higher IQ's.  Their kids seem like little "Einsteins" though socially they are very delayed or impaired.  Also, many people don't know or understand the early signs of autism.  Many people don't want to believe that their child may be on the spectrum.  The only problem about the parent not knowing or accepting it is that they are missing a very important opportunity for their child to learn.  The important thing to understand is WHY early intervention is so important.  People hear about early intervention and even talk about how good it is that people "catch" it early, but most people don't understand the true significance of detecting the signs and acting on it at an early age.  It is not only because of the extra years that they recieve therapy, but about the way the human brain works.  I wanted to write a post to inform everyone about the early warning signs and red flags so that you can help your loved one. 

 

EARLY SYMPTOMS OF AUTISM (Under 12 months)

 
1. Decreased social responsiveness
Examples:
* Responding to their name
* Looking at people
* Joint-attention
2. Atypical Sensory-Regulatory Behaviors
Examples:
* Increased mouthing of objects
*Unusual vision attention patterns
* Increased irritability
 

EARLY SYMPTOMS OF AUTISM (Second Year)

 
1. Adversion to social touch or proximity
2. Lack of appropriate gaze
3. Lack of warm, joyful expressions with directed gaze
4. Lack of sharing interest or enjoyment
5. Lack of response to name
6. Lack of coordination of gaze
7. Lack of showing objects
8. Repetitive movements or body gesturing
9. Repetivive movements of objects

 

EARLY SYMPTOMS OF AUTISM (Ages 2-Preschool)

 
1. No smiling in response to a smile
2. Lack of response to name
3. Not able to follow a point
4. Lack of initiating a request verbally or non verbally
5. Lack of joining into play with an adult
6. Lack of eye contact
7. Lack of pointing to objects desired
8. Repetitive behaviors or patterns
9.  Out of the ordinary tantrums
10. Difficulty with change or transition

 

Ok, so why is early intervention so important? 

Research proves that kids who receive intensive early intervention services are more likely to have improved long-term outcomes. Early intervention can maximize their learning potential by addressing communication, problem behaviors, play skills and overall skill development from a very early age. We know, through extensive brain research, that neural plasticity (the brains ability to learn new skills) decreases with age. When children are very young their neural plasticity is high, but as they get older it decreases. When this plasticity decrease, it becomes more difficult to learn new skills.  Autistic children in particular avoid things that are stressful or difficult, so the older they get, the harder it is to teach these skills.  This could cause them to become more isolated or withdrawn. This is not to say that any age is too late to begin intervention.  Intervention can help anyone with ASD at any age.  The fact is that beginning early, while the brain is still malleable, gives the child their best chances of success. 
 
I have a good friend who came to bring me dinner the other day as I was recovering from surgery.  She told me that she was beginning the process of getting her 2 sons into speech therapy.  Neither of them show any red flags of autism, however, she is so proactive in parenting that she has noticed things that other parents may have otherwise overlooked or just not acted on.  Her oldest son has a very hard time articulating his words.  Her younger son, who is 2, should know around 350 words and doesn't.  This doesn't sound like a big deal, huh?  Well, I think it is so fabulous that she is being proactive.  She sees a problem developmentally and is acting on it.  Whether the doctors tell her to go forward with speech or not, she is doing what she feels is best for her son.  Its inspiring to me to see moms who are on fire about motherhood.  They care about the details of their children.  I feel that mommyhood is a ministry.  With any ministry, one should strive to do their very best for the Lord. 


Colossians 3:23-24

English Standard Version (ESV)
23 Whatever you do, work heartily, as for the Lord and not for men, 24 knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ.
 
A while ago, I made a video of Jacob and his early symptoms.  If you would like to view it click on the link below or copy and paste:
 


Thursday, November 1, 2012

Halloween


 
Halloween was so fun for the kids. I had to stay home to recover, but they all went trick or treating. Jacob had a panic attack about his dinosaur mask and refused to wear it, but his costume was still cute. I got a video of him at one house and he would hold his daddy's hand and walk up the driveway with all the kids and then reach for his daddy to hold him when the people would answer the door. I'm pretty sure he was just as excited as he was scared. I was just glad he was able to join in on the fun with his siblings and cousins
 
This month Jacob will be 2 1/2.  I feel like Jacob's autism is becoming somewhat more obvious.  He spins in circles over and over making strange finger movements.  He still is not requesting anything using words, except with his therapist when he occasionally says "on" for a specific toy, and he isn't calling me "mommy" or his dad "daddy".  He is using his PECS pretty well. The other day I was determined to play a game with him or read a book to him and I couldn't get him to look at me for more than a second.  I tried everything I knew how to do, but he just wouldn't play with me.  Its been hard the past few weeks.  I don't really know why I am feeling overly sensitive about it again, but I guess I just hoped that he would be further along by now.  Or maybe its just the weird feeling that I get every few months when I am reminded that although he is making improvements, he still  has special needs.  It becomes our normal and then I am reminded of what kids his age should be doing and then I feel sad about it.  Its usually when a friend with a child his age comes around and I see all of the things they are doing and saying.  As he is getting older, the things he should be doing are becoming greater and greater and that makes the gap so much larger to me I suppose. 
 
I had surgery recently and my step mom has come to help out and she keeps reminding me how sweet Jacob is.  His autism is severe, but his behaviors are not aggressive or violent.  The only real tantrums or fits of aggression that we see so far are when we keep the IPad from him or when we come in from outside.  Being considered severely autistic means that he has major developmental delay, major speech delay, and major repetitive behaviors.  Most people think that to be considered severe the child has to be very aggressive.   I am so thankful he is such a sweet boy and loves me.  He love to snuggle but he doesn't snuggle like a normal child, he likes to sit in people's lap facing out.  He doesn't do it with everyone, just a few special people. 
 
Grandma happened to be one of those people and I am so thankful they bonded.  One day, while he was doing some particularly strange movements and spinning, Grandma said,"He is beautiful to watch."  In that moment I stopped feeling so sad.  Normally each time he engages in repetitive behavior I feel a little sad for him.  I probably feel a little sad for me too.  My tummy gets a little nervous and my heart sinks a bit. This time it was nice to be reminded of how unique he is.  Since then, I have been watching him and seeing the beauty of his uniqueness.  I can't wait to see what God has in store for him.  My sweet boy is different.  He may always be different and I am learning to accept and enjoy it. 
 
I was reminded of this poem I read a while back describing what its like to raise a child with a disability.  I wanted to post it for those of you who haven't read it.  Enjoy your child, enjoy their differences and wait to see what God has in store for them.
 
 
Welcome to Hollandc1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever go away... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



 

Autism Speaks Walk 2012





 
The Autism Speaks Walk was awesome this year.  We had friends and family there supporting us and it really was an amazing experience.  I am so honored that I was able to be in the Grand Club for raising nearly $4,000.  I hope next year will be an even bigger success!
 
On another note, I thought it would be important to mention that this year's walk was way easier than last year.  Last year, we had just gotten the diagnosis.  As I walked I took pictures of all the signs on the side of the path with the statistics.  I watched all of the kids with autism and how they acted around their families.  I cried and cried.  It was a sad day for me.  I can't explain the feelings exactly.  It was just rough.  This year, however, it was so different.  I walked with hope.  Friends and family came to walk with us and it was fun.  I watched the kids with autism and smiled, knowing that my special little boy will make me just as happy and they do to their families.  It was so much better than last year. 
 
I write this to those parents who have recently received a diagnosis for their child.  It does get better.  I know it will never be easy, but it definitely isn't hopeless and it does get better.  Its only been about a year and I feel so much better than I did before. Your child will bring more joy to you than you can imagine. 
 
I want to thank everyone who donated or participated in one of our fundraisers.  Thank you so much.  If you have any ideas of how I can do an even bigger scale fundraiser please email me. 
 
 


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. 

Tuesday, September 11, 2012

FIRST WORD!!

Jacob is finally starting to really increase his babbling and is even echoing what he hears from us.  He repeats E-I-E-I-O by singing "E-I-E-I-uh" its so cute.  He has been babbling dada for a while and also sings along to the Talking Words Factory by singing "uh-uh-eeeeeeeee" when they sing factory.  Today, however, he clearly said "IN" when his speech therapist was having him put puzzle pieces in a bag and she was saying "IN" to him.  When I told the doctor that Jacob would say dada when we said it she said it didn't count as a word because he wasn't actually using the word about his dada.  This may just be echolalic speech, but since he was in fact putting something in, I am choosing to call it his first word!!!!!!!!!!!  Woo hoo.  I can't tell you how much I love this sweet lil guy.  I downloaded his singing on YouTube.  If you would like to see it please go to http://www.youtube.com/watch?v=AE43JUYRRCk&feature=youtube_gdata_player

Jacob's ABA therapist will start working with him Monday, Wednesday, and Friday each week for an hour and a half each time beginning next week. I am totally excited for that to start.  She will come to our home and help him with behaviors, speech, concentration, etc.  I will post blog updates as he grows and learns new things. 

Jacob has gotten a new coach at church.  She has worked with autistic kids before in the school system and seems AMAZING.  Jacob has been doing really well in his new age appropriate class at church and I am so thankful for that.  If it weren't for the class going outside (where he tends to eat rocks and fall off the jungle gym) I don't know that he would need a coach.  They are saying that he is doing most of what the other kids are doing, however, I know that he isn't listening or understanding anything because he doesn't understand most commands or communication except simple "no" or "come here".  I think he will show his true colors a bit more when they start expecting more from him, such as to sit down at a table for a while or listen to a lesson without getting up.  He just isn't capable of those things yet, but I am hopeful that he will be soon.  I just can't explain how thankful I am for my church.  This year they have begun a coaching program for the special needs kids and I am just so thankful that they are willing to meet the needs of all their members.  It is so nice to feel so loved by my church family.  If you aren't involved in a church I really encourage you to find one in your community.  Being a parent of a special needs child is so difficult.   I can't stress enough how having a strong support system grounded in Christ is just what we as parents need.  I love the constant encouragement to stay in the Word, stay focused on what really matters and just people who genuinely care about our well-being.  This past Sunday, I had a friend come up to me and hand me this super cute Autism Speaks notebook just to show me she was thinking about me.  I don't think she even realizes what an encouragement that is. It is so nice to be able to serve God by serving others at the same time.  Its just nice to keep my focus on HIM.   I am so so thankful for my church. 

Meanwhile, I have started school myself.  I am enrolled in the Applied Behavior Analysis program at Ball State University working towards my Masters degree.  Many people in my classes are professionals and have been working with kids with autism so I find myself at a disadvantage in some areas, but being a mom of an autistic child has helped me in other ways.  For instance, every single book I read and all the information I learn is to help my child and therefore I am not simply studying to pass, I am studying to truly learn.  This has been great for me because I have aced all my tests and essays so far! Yippie.  It has been challenging to juggle all my responsibilities.  Between my family, homeschooling, my school, Jacobs therapy, Church service and Bible Studies, I definitely have my hands full, but I am really excited about this year and ready to take it all on.  Everyone keeps asking me how I am going to do it and I just have to say that God gives me the strength to do what I need to do.  I have prayed about where to step down, where to step up and I feel like I have a good balance of things in my schedule with my priorities still where they need to be.  My studying mostly takes place in the middle of the night while the family is sleeping.  I am a night owl so it works.  People have also inquired about what I plan to do with my degree.  I am not getting educated to make a career of it, I am getting this education to be the best mom I can be to my son.  I don't think its a necessity for a mom of a child with autism, but since I was reading every book I possibly could anyways then it seemed appropriate to go ahead and learn from professionals and from research.  What do I plan on doing with my education?  For now, my plans are to just keep learning until I know how to teach and train Jacob.  After my kids are older, I would really like to train other parents to do therapy for their children.  I would especially like to help families with lower incomes or that do not have insurance coverage.  A typical ABA therapist makes anywhere from $80-$220 per hour.  Not a lot of people can pay for that type of therapy or training, especially since research reccomends 30-40 hours per week of ABA.  I just hope I can help other parents to teach their own children so they aren't driven into poverty due to these fees, or just left helpless.  Those are my goals.  Please pray for our family as we have so much on our plate this year.  Please continue to pray for Jacob's development.  I sure would love to hear him say "mommy" or some sort of communication that is purposeful by the time he turns 3.  I think I want that to be a goal we focus on in therapy. 

BIG HUGE thanks to all that donated and participated in the fundraiser and raffle I had.  I am so thankful for the outpouring of love and support we are receiving.  God is so so good! We are still planning on doing some other fundraisers at the local grocery store and if you feel like donating directly to autism speaks please visit www.walknowforautismspeaks.org/houston/rejoiceforjacob
 

Sunday, August 26, 2012

Raffle for Autism Speaks

 
Autism Speaks Raffle
Prize: Nola Party Bucket with Stand $110
Raffle tickets $5 each
 
Thank you for participating.  Every penny will be donated to the Autism Speaks Organization in Jacobs name. For every $5 you donate a ticket will be added to raffle in your name.  This prize will be new in the box. Thanks to Susan Stillman, Willow House representative, for donating this prize.
 

Tuesday, August 21, 2012

Tongue tie release











 These are pics from the hospital while we were waiting for surgery and when they were taking Jacobs vitals.  He wasn't nervous because he had no idea what was about to happen. 


These pictures were from immediately following the procedure in recovery.  He was in some pain and confused from the anesthesia.  He had a hard time adjusting to the feeling of the stitches in his mouth.  This was not something I was prepared for.  I knew there would be a little pain, but Jacob refused to eat, drink, or swallow for 2 days because of the stitches.  We had to use a syringe to force fluids in him to keep him hydrated.  After the third day he was so hungry he finally started eating again. 


This is the way he hung his tongue out for 2 full days.  He was drooling all over himself like crazy. It was pretty funny.  I am so thankful for a successful surgery and for the prayers from everyone. It has now been a few weeks since the surgery and we are surprised to see that he has started making new sounds such as the "g" sound and the "k" sound a few times.  He seems to be babbling a lot more.  I am so excited that the surgery was helpful. For those moms out there that are considering it, please take note that if your child has serious texture issues, this will likely cause a problem because of the stitches.  If you can work through those issues, it'll be worth it most likely.   It was well worth it for us. 

While we were in the hospital we met another family who had come to Texas Children's Hospital all the way from Australia.  The doctors came to speak with the family in front of everyone in the waiting room so I couldn't help but to overhear that the 6 year old girl, Morgan, had a large tumor in her chest.  Her chemotherapy hadn't worked and this was the only doctor that would operate on her tumor due to the location of it near the spine. As they spoke, I grabbed my husbands hand and asked him to pray.  He thought I was asking him to pray for Jacob so after he prayed I started praying for Morgan.   As they came to take Morgan away she rushed back to her mom and grabbed her legs crying.  Her strong mom held it together as her dad pulled her off and took her back with the surgeons.  It was as if I was watching the most heart wrenching movie in the whole world, but it wasn't a movie.  It was real.  I was there experiencing the saddest thing I had ever seen.  I fell apart crying.  I asked the mom a few questions just to try to get her spirits up, but soon afterwards our doctor walked up to talk about Jacob.  He was speaking softly and with hesitation as he went over all the risks of the surgery with me because he could see that I had been crying.  I told him that I wasn't crying about Jacob's procedure, but for the family that had just sent their baby girl into a 12 hour surgery to remove a tumor.  He changed his tone and reminded me that this is a time to count our blessings.  It amazes  me how God can speak to me through situations like this. Sometimes, especially right before a surgery,  I can get so wrapped up in Jacob and autism that I fail to see the bigger picture.  Don't we all get so wrapped up in our own bubbles sometimes that we have a hard time taking the focus off ourselves?   Morgan's mom had walked off in the middle of our conversation with the doctor and immediately after we signed all the papers and were waiting for Jacob to be taken back Cret turned to me and said,"Allison, you didn't pray with her!" I was so emotional that I didn't stop to ask her if I could pray with her.  She was all this way from home and all I did was just ask her a few questions.  I kept thinking about them.  I kept thinking about how if my child were in such a situation that the only possible peace that I could have through it all was in Jesus. I looked in the waiting room and they weren't there.  I figured that I may not see them again because that surgery was all day and Jacob's was only 30 minutes.  I told Cret that I needed to go get Morgan a gift and share my heart in a letter to her parents and find a way to get it to them.  I knew if it were a packaged gift maybe one of the nurses would pass it on to them later that evening.  While Jacob was in recovery I left him.  Yes, I was the only parent to actually leave their child in recovery, granted Cret was there, but I am sure it still seemed odd for me to leave.  I went back to waiting room where I had met them and a nurse took me to the waiting room where the parents were.  I was so extremely happy to be able to see them in person and hug them and tell them that we were praying for them.  I received an email a few days later from Claire, Morgans mom, stating that the surgery went well.  It was 12 hours and they were able to remove 50 % of the tumor.  I am so happy the Lord put us there to be able to pray for them. I feel like God was showing me that He is in control of every situation.  I always pray for God to keep giving me the proper perspective.  I say it over and over and am constantly in awe of how God does it.   I am truly thankful that the Lord was showing me that these children belong to Him.  All the worry I had for Jacob's surgery was for nothing.   For one, I should have been thanking God for a hospital that is world renown right here in our backyard.  Also, I was concerned about a little tongue clipping while another family was sending their daughter into surgery for a tumor.  I am so thankful that both surgeries were a success. To God be all the glory.  Please please continue to pray for Morgan and her family as she continues to recover. 

Monday, August 6, 2012

Jordan's poem

Hi everyone.  If you are girl and you know me, then you should have received an invitation to my fundraiser party by now.  We have been working hard to try and raise money for research and while I have been planning away, Jordan has been writing a poem about Jacob.  She said she wrote this originally to be a song, but she couldn't think of a tune so now its a poem.  She wants to help raise money for the walk.  Please watch her youtube video below

http://youtu.be/281kwiA2Npc

If you'd like to donate money for the walk please visit www.walknowforautismspeaks.org/houston/rejoiceforjacob

If you'd like to come to the fundraiser please email for details. 

Tuesday, July 24, 2012

A little sad.

Life has been a bit crazy since this past weekend.  Our dog was attacked by a stray cat in front of my daughter and it was a bloody mess.  To make matters worse I gave my dog a teaspoon of children's ibuprofen, remembering that you can give a dog pain meds, only to find out that ibuprofen is toxic to dogs.  Then Tyler got a bad sinus infection, Jacob found out how to remove the padding from his pack n play and put it over his head while laying on one skinny bar.  Now we are trying to get him to sleep in a toddler bed, which isn't working so he is screaming and roaming around the room all day for nap time and during the night there is no telling what he is doing. I find him in the morning on the floor with his clothes off.  Then to top it all off Jacob has decided that if I don't change his diaper in the millisecond that he poops, he will find a way to reach in there and get his hands all poopy.  So today as I was cooking dinner, I look down only to see Jacob, hands covered poop and looking up at me with this innocent smile.  So I go give him and me a shower and I get back to cleaning.  I turned on his favorite show to distract him so I could have a few minutes to do the dishes without him frantically trying to grab every dish and knife, and there he went running in circles around the sofas.  If we turn on his favorite show or he has a toy that makes him excited he runs around in circle patterns over and over and over.  I stopped his running and picked him up and tickled him and held him and for a brief moment he looked at me dead in the eye and gave me the sweetest shy smile.  Those are the moments I live for. 

When Jacob was diagnosed with autism I had no idea how much his autism would change my life.  Its changes the way I parent, how our family makes plans and who we hang out with, and even how I feel.  I have the thing that most parents dread... A child who is special needs.  My hopes for my child are different because of his special needs.  My hopes for all my children are different.  As I heard in a recent movie (paraphrased) "All the hopes and dreams of normal parents are out the window when you have a child with autism.  You no longer care if they go to college or marry a rich person, you just want them to be able to cross the street safely."  This couldn't be more true, but also pertains to my other children.  I want them to love the Lord and to be happy.  I am so thankful for their abilities, but all the normal worldly expectations just don't seem quite as important.  It has been a struggle for me, though.  While I am trying to accept Jacob just as he is, I am also having to deal with behaviors that are strange and hard and all that comes with having a child with autism.  Most recently, its been the challenge of balancing Jacobs extremely demanding needs with my other 3 year old's needs, my daughters needs and homeschooling, church functions, my marriage, and most importantly my relationship with Jesus.  I have to balance all of these things while trying to figure out the most effective therapies and food diets, educating myself on how to control Jacob's behaviors and possibly get him to communicate, debating getting a job in order to get insurance for him and trying to decide if that is choosing him over my other kids.  My dreams of carefree parenting are gone.  Just the other day I was talking to my sweet sister about taking the kids to the pool.  She said that it is so much easier with her 4 kids now that they can all be on their own at the pool.  I sat there in that moment and wondered if we will ever have a carefree vacation or pool outing.  Probably not.  That's ok, though.  In those moments that Jacob smiles at me and in those moments that he pulls my finger and takes me to what he wants, I know with everything in me that its all worth it.  This life isn't supposed to be all about me.  Its supposed to be all about bringing glory to God.  I hope that I can do that in many ways, but one way that I want to glorify him is in parenting my children.  I pray that in weeks like this I can keep proper perspective.  Today, I was reading in a book that I bought on parenting children with autism that Dr. Marion O' Brien, professor of human development and family studies at the University of North Carolina, has studied autism mothers and in her research found that depression is extremely prominent.  She attributed the depression to "ambiguous loss", whereby a mother is feeling massive shapeless grief about their child's disorder.  While many psychologists suggest the depression is a phase of the grieving process, she believes it isn't so simple because the child has not passed away.  It is grieving the child that you thought you had or would have (Senator, Susan. The Autism Mom's Survival Guide).  While reading this I could clearly see how this is true.  I did and do still go through a grieving process.  The difference is that it doesn't become a depression, just a little sadness.  There is still joy in my heart because I trust the sovereignty of the Lord in all things.  I thank the Lord for this joy despite circumstances.  However, I write this because this week, particularly today, I have been feeling a little bit sad.  I am still trying to just accept Jacob and love him for him, but meanwhile going through all this therapy and trying to make his behaviors better.  Its a little confusing for me.  I think I need some friend time or something.  One great thing I did read in the book was that the author asked a women how she stayed so incredibly happy throughout her son's extremely severe autism.  She answered, "Its not cancer."  At the same time her son was diagnosed with autism her friends son was diagnosed with stage 4 cancer.  She said that while they had much in common with their sons extreme behavior and emotions and the toll on them as mothers, her son was healthy.  Autism is not tragic and it is not the end.  These kids are not broken.  I have to keep remembering that.  It isn't my job to fix him.  Its my job to accept him and try to make life easier for him.  So I encourage you to do the same.  One day at a time.  Ask for help when you need it.  Your baby is a precious gift from God that He hand selected to be special and given to you.  You do not have to live in depression.  Give it to the Lord and trust His plan for you and your family and your child.  You are not alone.


I ask for prayers this next week as Jacob will be having surgery on his tongue August 1st.  Please pray that I can somehow keep him healthy until then and that the surgery is a success.  Thank you for your prayers.

Thursday, June 28, 2012

A MIRACLE!!!

Its funny how God works sometimes.  You can be running in one direction, the direction you think you are supposed to be going in, and He stops you dead in your tracks...And I mean slams the door, shuts the window and says NO!  Well, thats what happened to me today and I must say it was a miracle.  Today God sent me someone who will forever change my life. 

A dear friend of mine from church set me up on what I called a blind friend date.  It was a woman she is good friends with, who has a 22 year old son with autism.  I didn't know what we'd talk about on our friend date, but I was so excited to hear from someone who had been there and done that and who might have some wisdom to share.  In all honesty, I thought maybe I'd get even more recharged to keep fighting and fighting for Jacob and hoping and praying for him to be "normal".  Well, she began to share her journey and she was explaining how in the beginning she would take her son out in public or to resaurants and always feel like she had to appologize for his behavior or that she needed to explain why he was acting the way he was acting, until she finally realized that she didn't owe anyone an explanation.  God had made him perfect just the way he was.  I then went on to ask her how she balanced hoping that he would become "typical" or "normal" with being at peace with his autism.  That's when she shared something with me that I will never forget.  She said that when her son was in middle school she felt so burdened with the thoughts and prayers for her son to be healed or to become normal.  She felt chains holding her to that anxiety and worry or the hope of him changing.  One night God gave her a vision in a dream.  She said she woke up hysterically crying and crying and immediately wrote down her dream so that she would never forget.  Her dream changed her life and will forever change mine.  Now I didn't write it down as she told me but here is my paraphrase as well as I can remember....She dreamed that her special needs son was a "normal" teenage boy.  She was in the kitchen cooking or cleaning and he walked through the room and said,"Hey Mom" in the typical teenage son kind of way with attitude and just went on with what he was doing and was out the door.  She remembers in her dream thinking that he was so different, their relationship was so different.  It was a nightmare.  She no longer had the son that she knew to be hers.  They didn't have the close relationship she had with him in real life.  She woke up from the nightmare crying because she knew God had just shown her "See this is the son you've been praying for, the "normal" son you've wanted so much.  Do you want him or the son that I have given you?"  She knew in that moment that God had given her the perfect son that she wanted. 

You see, no one can explain the bond you make with a special needs child.  No one can understand that relationship until you have it.  The son she thought she wanted was not the son she wanted at all.  God knew what he was doing.  She immediately felt those chains released.  She immediately felt so thankful for her son and everything that her son was. 

WOW. WOW.  You know, here I have been praying for a "normal" son and worrying about if I am doing enough to make him "normal" and I haven't stopped to thank God for Jacob and who he is now without wishing him to be different.  Its like I have been worrying that if I accept him the way he is and if I let go of the worry of him not healing that maybe then God won't heal him.  That's the amazing thing, though.  My wishing for him to be "normal" won't make him "normal".  Actually, if he stays autistic forever, it'll only bring deep heartache.  Additionally, my feelings don't change what God is ultimately in control of.  My feelings will only change my heart and my relationship with my Savior, Jesus.  I need to be thankful and so happy with Jacob as my autistic son.  Just as my friend said to me, I want to be able to tell God that I don't want Jacob to change.  If God chooses to change him then I can be thankful for what God does, but Jacob is perfect the way God has created him.  What's more is that I have been afraid that accepting this diagnosis means giving up.  That isn't further from the truth.  Accepting his autism means loving him for who he is and working to make him be able to function the best he can.  I can fight for autism coverage.  I can walk in the Autism Walk for research and I can try to do my very best in therapy, but all while being at peace with the way that God has created Jacob. 

This whole thing reminded me of the woman's retreat my church had a while back.  Let me tell you that I was not too excited to go to the retreat because we were moving out of our house THAT weekend.  I was stressed to leave my family and go and in fact I think that made me a little unattentive at the retreat.  But one thing we did there was that we had all picked up some stones.  These stones represented things in our life that we were hanging on to that we weren't giving to God.  At the end of the retreat we were to lay them down as if giving them to God.  I did lay all of my stones down, not as a lie, but I just really wasn't into the whole thing.  I remember my Mom asking me if I really had laid it down and given it to God.  I knew she meant Jacob.  I said yes and she cried a little, but it wasn't a happy cry.  She was sad.  She knew I hadn't laid my stone down, really.  Well to all the women that were there, I have picked up another stone as a symbol of Jacob.  I don't think I am quite ready to lay it down completely.  I want to say that I am and I want to lay the stone down, but this time I am taking this very seriously and I am not going to lie for the sake of sounding good.  I am going to deeply pray and ask God to release me from this and I am going to try my hardest to let go and be thankful for the Jacob that I have, even if it means that this Jacob will always be autistic or even non-verbal.  I will rejoice when he makes steps forward, but I will not be dissappointed or compare him to other children who have overcome autism. 

And as for this lady, she has 2 sons.  One is autistic and one is "typical".  She doesn't want or pray for her normal son to be autistic anymore than praying or desiring her autistic son to be normal.  What a great place to be....to be happy, content, and thankful for the perfect children God blessed her with.  Thats what I desire.  She knows that the close bond that she has with her special needs son wouldn't be there if he weren't special needs.  She is thankful for the children God gave her.  This idea sounds so simple, but let me tell you there is nothing like having a child with special needs.  The unique thing about autism is that some kids totally reverse back to normal and some don't.  Without that true faith in Gods sovereignty it can be harder to handle than I can even describe.  I have been living with constant fear or worry that I am not doing enough for Jacob to pull him out of his autism.  That fear and worry has become my chains around my wrists.  I want so deeply to lose these chains and let go...to trust God with Jacob and just do the best I can for today without worry of the future.  I am so thankful for this new perspective and for God sending me this lovely woman to share her journey with me. 

Monday, June 25, 2012

Fighting for him

Today I was babysitting a few kids and while they napped for a couple hours I read a book, yes an entire book.  It's called "Louder than Words" by Jenny McCarthy.  I am not a big fan of Jenny, we differ in more ways than one.  For instance....our lifestyles, religion, basically everything except that we both have children with autism, but for some reason I couldn't put the book down.  I guess I just needed to read about another mom's journey of confusion, frustration, anger, fighting so desperately for answers and to "fix" her child's autism.  Its crazy, but its so interesting to read about the different stages people go through.  One line that really hit me was "When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support.  When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle."  Its so true.  Obviously, I understand why you would comfort and aid a family with someone diagnosed with cancer, but often I wonder why some people avoid talking to me about Jacob like he has the plague.  That's how I have been feeling lately.  Its hard.  I want to be able to talk about it and cry sometimes, but I am supposed to just be okay with it by now.  Am I questioning why this is happening to me or angry at the world? NO.  But I still hurt for him.  I want him to be healthy and "typical".   I feel like I am in limbo right now, not that I don't want to do more for Jacob, but I am limited to what I can do because of insurance and money.  If anything this book is just what I needed to kick my butt back into FIGHT mode.  I just can't accept that there are no answers for him.  I know part of me must accept that he is different, but on the other hand I have to fight for him and keep seeking answers.  Jenny mentions a lot in her book about DAN! (defeat autism now) doctors.  Some of the techniques that they use are widely regarded as quack medicine by pediatricians so I have been reluctant to go to one, plus they cost a fortune.  I think I will look into it, though,  and just take Jacob to get some basic testing.  I have read a lot of research regarding yeast and heavy metal toxins and autism so it wouldn't hurt to have him tested. 

Today was especially hard for me and I think this book came just at the right time.  Instead of feeling sorry for him, I need to be his advocate and be strong for him.  For nearly 45 minutes today he frantically threw himself all over the floor, stretching out his arms and legs like he was so uncomfortable and just screaming and crying.  We tried snuggling, burping, changing, feeding, tv, everything, yet nothing would console him.  In that moment I just wished for a word.  I wished he could tell me what was hurting or what he wanted.  It was a cry as if in pain and not his temper cries and that was the hard thing for me.  "I don't know what you want, baby" I kept saying. "I'm sorry, buddy. I'm so sorry."  I would give anything to just know how to help him. 

Jacob turned 2 last week.  We had a super fun party and he did excellent.  No tears when we sang, and he played and splashed around in the water.  It was perfect.  His 2 year checkup wasn't as bad as expected.  Yes I had to fill out the crazy survey which showed that Jacob was obviously so far behind on every single question, but I was ready for it and I just breezed through.  One strange thing I wanted to document in case I want to remember in the future was that the doctor mentioned Jacob had dropped to the 1% for height and had just gotten in his 1 year molars.  I asked if his size and teeth issues were typical for autism and she said no.  He may just be a little guy.  He's my sweet little guy. 

He made a huge breakthrough in his picture exchange communication system.  We finally found a few games (putting bears in a tub and then spilling them out and straws in a bottle and spilling them out) that he loved enough to start pushing the "go" PEC for me to spill the items back out on the floor for him.  It literally makes me want to cry every time he pushes it.  HE IS COMMUNICATING!! Its only a matter of time before he can tell me more with his pictures and I can't wait.  He also has become fixated on the cabinet door hinges.  He opens the doors and just stares at them as if he is trying to figure out what makes the door work.  Its pretty cute, but I have to limit it or he would stare at the door all day. 

We tried Jacob in the 2 year old class in Sunday school this past weekend and of course he is not ready for it without a coach.  My husband thought maybe he would be okay, but I knew he wasn't ready.  When the teachers call the kids to line up or come listen to the lesson Jacob just has a blank look on his face as if they are speaking a foreign language.  He also had a huge rock from the playground in his mouth that luckily I saw and ripped out of his mouth before he tried to swallow it.  He just has no idea yet, but I have faith that he will.  My plan for this summer is to try and stay really concentrated on Jacob's therapy and get him into a DAN! doctor when we can.  Please pray that we find a good doctor who won't try to sell us on lots of pills and junk we don't really need.  I just need an honest doctor to run tests and help us with some answers.  I am so thankful to be recharged and ready to keep fighting for my little guy.  He is so precious. 

Friday, June 15, 2012

Thankful for a new sound






 Jacob occasionally babbles a variety of sounds, but for the last few months he would only say about 4 sounds when we ask him to...."dada (with no meaning behind it), u, a, and mumble the tune to uh oh.  Today its official!! We have another sound. He is saying "y"! Yippie for Jacob and progress.  I am so thankful for another sound.  I can't wait until he can say a word or two!

Recently, Jakey has discovered how to take off his pj pants and diaper, so every 20 minutes I find him running around naked.... Not thrilled.  He seems to be gaining weight finally.  He eats a lot and loves pizza, yogurt, and chicken.  He is becoming more and more irritable if you try to make him do things he doesn't want to do, such as therapy.  This seems to be appropriate for his age.  Can't wait for his birthday on the 22nd!

We have his 2 year check up on his birthday and will have a super fun party on the 23rd!! Thinking we may skip the singing this year, though, since last year he cried and cried when everyone sang for him.  Maybe we will all say happy birthday really quietly.  Its his special day, so we can do something especially for him.  Love my sweet boy.

Monday, June 11, 2012

Tongue Tied

A few months ago we went to the pediatrician and she told us that it was time to have Jacob's tongue clipped.  He was born with a birth defect that people refer to as being tongue tied.  It looks like a snake or heart shaped tongue.  He has very limited range of motion with his tongue.  When he was a baby I went to 2 different ENT doctors to inquire about getting it clipped and both said unless he was losing weight that they wouldn't consider clipping it until he was 2.  Well, a friend referred me to this awesome ENT that I took Jacob to last week and he told me that Jacob has the classic "tongue tied" birth defect.  He said that his tongue was the primary reason Jacob wouldn't nurse as a baby.  With a tongue like his there was no way he could latch.  Ugh...Very frustrating.  My breast milk would have been such awesome nutrition for him.  Anyways, we are having Jacob's surgery to get his tongue clipped on August 1st.  It is a minor surgery, but they will have to fully sedate him, so please be in prayer for this.  The pediatrician told me that this surgery is considered controversial because many doctors were clipping kids who didn't need it.  Therapists can help a child to work around the defect to learn to speak and eat with it, but both the pediatrician and ENT said that with Jacob's developmental delays they don't want any extra obstacles to interfere with his speech.  The ENT also said the surgery is only controversial if the child doesn't need it and Jacob does.  I also read a few blogs of people who had their tongues clipped and many said they wished they'd had it done very early on because it hurt their speech and it looked like a deformity and they couldn't french kiss their spouse with it.  HAHA hopefully I don't have to worry about Jakey french kissing any time soon, but I sure want to give him any advantage I can with his speech and eating.  Jacob currently doesn't eat anything that crumbles in his mouth, like cheese its and crackers.  I think it may be because he can't maneuver his tongue around to feel like he has control of the food in his mouth.  The doctor said that he didn't feel that the tongue was the reason Jacob isn't speaking, but that getting it clipped may help.  I don't love surgery, but I am excited to finally be getting his sweet lil tongue fixed. 

Therapy has been going well.  I am still using all the ABA techniques I have been trained in, but instead of doing all of it in a controlled setting we use it during floor or play time.  Jacob surprised me the other day because the therapist said it was time to move on to a more difficult puzzle than the 3 piece Melissa and Doug puzzles we'd been working on and so I purchased him a 9 piece puzzle (the pieces don't fit all together, they each have their own spot) but he mastered the new puzzle in 1 day!!! Amazing!! I introduced him to a 12 piece that does fit together, but he just threw all the pieces and ran off, so I guess we will keep working on it.  He has started to imitate me a little bit.  When I stomp my feet and ask him to stomp, he does it.  Two days ago, I got on all fours and asked him to crawl with me and he did, but hasn't done it again.  It was so sweet to see him playing with me that way, though.  I love that we are making connections finally. 

On a more personal note, I went and saw the movie What to expect when you're expecting and it was so so cute.  I watched as the women had their babies at the end and were holding them gazing at them and I just cried and cried.  It made me so sad for some reason.  I guess I remember when I had Jacob and those connections just weren't there.  I connected immediately with Jordan and Tyler, but I question myself and if I tried as hard as I could to make those connections with Jacob.  I don't know if I did.  It kills me to think about it. Was I the best mom I could possibly be to Jacob in the beginning?   Luckily, I spoke to my sister about it and she reassured me that Jacob was different from the beginning and everyone could see it.  She said that I am trying my best now and that's what matters.  I felt the need to share this because I know every mom out there can relate.  Are there things you regret or wish you'd done in the past for your kids?  Surely there are, but it doesn't help them or yourself to focus on what should have been done.  Focus on being the parent that God wants you to be NOW.  Its never too late to start being the parent that you need to be.  The thing is I can't change all that I did or didn't do and worrying won't help, actually it can only hurt me.  I have to pray for God to give me the strength to be the mom He wants me to be now.  With God's guidance, through the Bible and prayer, I will teach and discipline my children in love and truth.  I have to stop those thoughts of things of the past right when they start coming up.  Sure its hard, but parenting isn't easy.  If I want to give my children all I can, I can't do that being sad, depressed, or anxious about what I didn't do.  That's my current goal.  I am praying for peace about the past, and trying to focus on things of God and how to teach my children all about Him.  I love my family so much and I don't want to take even one second for granted.  I don't want to waste one more minute on my past.

Tuesday, June 5, 2012

Fragile X Results

We finally received the results for the fragile x testing, which came back.....NEGATIVE!! Praise the Lord for the good news and answered prayers!!

We are very excited to know that its not fragile x and while this is good news for our family, I pray for the families that do not receive such news and for their journey through fragile x.

So where does that leave us now?  Well, still just AUTISM.... In case you haven't heard me say it lately (yeah right LOL).... there is still no one cause for autism and there is no cure.  We are still searching for answers and giving Jacob different therapies through ECI and I am giving ABA therapy with help from a great therapist training me. 

Jacob turns 2 this month on June 22.  We are preparing for Jacob's 2 year evaluation at the pediatrician.  Let me rephrase that....I am preparing for Jacob's evaluation....emotionally.  He still doesn't speak and I know he will not meet any milestones for his age, except motor.  So I have to keep reminding myself that he is special needs and his milestones are just different. I can't help but to hope and pray one day he will be on target.  That's the hardest thing about an autism diagnosis.  A lot of children overcome the symptoms, so you always hope your child does.  The truth is that some do and some do not.  Its hard to balance that truth with the hope for your child.  Hope that makes sense....

However, I am very very very thankful and happy for so many things.  Jacob is so happy and so loving.  I am so fortunate that he loves his snuggle time and he loves kisses from mommy.  I am so thankful that he sleeps from 8pm to 7 am.  I am so very thankful that he loves me.  Also, I am so thankful to my husband's work...New Tech Global for their willingness to match dollar for dollar any donations that the employees donate to autism speaks.  I hope more people will join us for the walk this year on October 13.  Its only about an hour and a slow paced walk, because kids are with us, and it just helps so much with getting the word out and research.  I am excited to see what happens this year.  God is so good.  I also ask that if anyone has any ideas regarding how I can raise money for the walk this year please email me.  Our team site is www.walknowforautismspeaks.org/houston/rejoiceforjacob if you want to join the walk or donate a little. 

I also have a prayer request for Jacob.  His therapist has told me that keeping him behind in the 1 year old class in the church nursery is a very bad idea.  The hours that he is in class with other children are so vitally important for his learning and development and being with children so much younger than him will not teach him to behave appropriately.  He gets along fine with the 9 months-1 year olds, but really needs to experience a class setting with children his age.  He needs to be coached on how to sit at a table and color or listen to story time.  However, if I were to put him in with the 2 year olds he would really distract the class.  I don't want Jacob to be a distraction to other children and I don't want him just running to the corner and hiding.  Our church has begun a coaching program where special needs children can have a coach with them in their own age-appropriate class.  I think this is a brilliant idea and I am so thankful to our church for trying to meet the needs of all the children in the area.  So my prayer request is for people to pray that we can find a coach for Jacob.  I can't wait to see what he can learn and do with some help. 

In therapy, he is doing well using his PECS (picture exchange communication system) to request certain toys and his milk.  He is doing 3 piece puzzles with ease and has mastered the idea of matching 2 identical objects.  Moving right along!!! Thank you for your continued prayers and support. 


Wednesday, May 23, 2012

Early Detection of Autism

I created a video about Jacob in order to teach people some of the early signs of autism.  Early detection gives children with autism their best chances of success.  Please watch and please consider donating in Jacobs honor to help fund the research we so desperately need.  www.walknowforautismspeaks.org/houston/rejoiceforjacob

Click the link below to view the video:

http://smilebox.com/playBlog/4d7a45324f5449324f54513d0d0a&blogview=true

Wednesday, May 16, 2012

Not my will, but yours.

This mother's day was such a wonderful reminder of God's magnificent gift of motherhood that He has given me.  Sounds silly, but for some reason this mothers day I really did reflect on how special it is to be a mom.  I also got another reminder of who I should be modeling myself after as a mother, a wife and a child of God.  In Bible Study this past Sunday we were discussing how Jesus, in agony, before he was crucified prayed to God....

..."Father, if you are willing, remove this cup from me.  Nevertheless, not my will, but yours, be done."Luke 22:42

It pulls at my heart in a way I can't explain each and every time I read this.  Not my will, but yours.... How many times have I prayed this?  Hundreds.  How many times, though, have I prayed this and still really believed and prayed for God's will to be my own?  Hundreds.  I know I can hope for Jacob to get better, but I want to have a heart that truly desires Gods will and not my own, even at the expense of Jacob remaining disabled.  How can I allow God to use his autism for His glory truly if I don't even believe his autism is Gods plan for us, at least for now?  I guess it boils down to trusting God and being content.  I want to fully trust in God and His plan. 

Thinking about trusting God and who He is and what He has done brought another thought  to my mind, that I just couldn't shake.  Who is this Jesus that I am trusting?  Well, he is holy, righteous, perfect, loving, powerful, mighty, infallible, miraculous, just to name a few.  But as Jesus was in agony  (which as we discussed in Bible Study showed his humanity) awaiting his death and about to endure something so horrific words cannot even do it justice, He prayed "not my will, but yours".  WOW!  He could have saved himself so easily, but chose to die and let His Father's will be done.  Yeah baby, that's the God I serve! That's the powerful, brave, and mighty God I need to put my full trust in.  It just amazes me that I so easily forget what He had to endure and so quickly think that what I am going through or what Jacob will go through is so hard and unfair.  Changing my heart to a heart of thankfulness has proven to be a challenge during all this with Jacob, but BOY do I need to.  The more I discover about God the more I see how blessed I am and how AWESOME HE IS!  So while I know I will have more heartaches through this journey with little Jacob I just ask that if you know me and I am complaining or sad, kindly remind me of the God I serve and the God that loves me.  Hopefully that should remind me that while I can be sad, I need to remain thankful and trusting in Him.  Remind me about what Jesus was about to endure and how he responded.  I want to boldly and bravely and honestly say to God "Father please heal Jacob, but if that is not your will, please let yours be done".

I love being a mom, even a mom of an autistic child.  It is the most difficult thing I have ever had to do, but its worth every second.  Thank you JESUS for these children.  Thank you JESUS for suffering the cross and conquering death for our salvation.  Thank YOU!!!

While I'm in a delightfully happy mood I would like to also list out some great improvements that Jacob has made.  Jacob will on demand repeat dada, a, u, and hum the uh oh tune.  He doesn't yet know what dada is, but I am so happy that he is repeating after us!!! He also is beginning to look for the milk pec to point to it when he is thirsty.  During therapy, he will put a ball in a bucket when I say "put in" and most of the time will take it out when I say "take out".  He will drive a car the proper way when I show him how and say "do this".  He also will clap when I ask him to most of the time and he can distinguish a few items by name.  We are working on him holding a crayon and marking on paper, but he isn't there yet.  He pops balloons on the IPAD that was donated to us and is working on counting games, which is a big step since at first he only wanted to put his feet on it....  So he is learning and moving forward, very slowly, but indeed moving forward.  I am so thankful for that.  We haven't received the results of the fragile X test, but I really am not expecting it be fragile X at all so I haven't been nervous.  Thank you for your continued prayers.  I pray for every mommy of a disabled child every single day.  My heart goes out to you more than you know.