Thursday, April 26, 2012

A new day a new issue and I need to praise God through it all!

There was a seriously disturbing letter published by Autism Speaks today on their blog.  It was a hateful letter from angry parents at an Elementary School who were asking the parents of an autistic child to remove him from the school.  They blamed the parents for his autism saying he wasn't normal and that it was the parents fault for not disciplining him.  They said not to make the normal kids suffer for their lack of parenting and that they would be embarrassed to have the worst kid in the school.  There was much more to the letter, but you get the point....Hateful... But when I read this I couldn't help but to try and see their perspective.  After all, I have 2 "normal" kids.  How would I feel if they were in a class with a child who was disruptive and aggressive?  I honestly don't know.  I know I wouldn't send a completely atrocious letter to their parents, but I might get annoyed or concerned.  So I wonder what the best way to handle this would be.....For starters, I believe the parents at that school along with so many others need to be thoroughly educated on autism and that the children's behavior isn't from the parent's lack of discipline.  That becomes obvious when you observe parents that have both kids with and without autism.  They are the same parents to both yet one has autism and one doesn't. It just overwhelms me that people can be such bullies.  I guess this struck a nerve today when reading it because Jacob has developed some recent behaviors that I don't know how to deal with.  He has started biting in addition to his recent temper tantrums.  He has occasionally in the past bit people when he got nervous or overwhelmed by a large group or loud noises, but the other day I went to church to set up for Awana and I put him in a room with his sister and brother only.  He is very comfortable with them and usually is fine.  On this particular day he was crying for me.  I let him cry and continued to finish what I needed to get done, which was less than 10 minutes.  When I went to get him out of the room I looked at his arm and he had bit it over and over and even drew blood.  Since then he has started to bite more and more.  I don't know what to do.  Why does he want to hurt himself?  Its incredibly sad and frustrating.  The not knowing what is wrong and the not knowing how to help him is the worst.   If I am not careful I find myself in a downward spiral of pity and confusion and sadness.  I read articles like the one from Autism Speaks and I get so angry and I think "WHY"?  Why does this happen to these kids, why are these parents going through this?  Why can't I figure out how to help Jacob.  I wonder when will this get easier?  Why is AUTISM so confusing?  I need a break!!! 

But that's not the right thinking.  We all think that at times, right?  You don't have to have a child with autism to get stressed out or feel like you deserve more or better.  I guess I just keep thinking higher of myself than I should.  Why do I feel like its unfair for me to have these trials or tribulations?  Its because my focus is on things of this world.  I'm comparing, I'm wanting to have it easy.  I want life to be fun and carefree.  But God doesn't promise me a life of ease....
"....In the world you will have tribulation.  But take heart; I have overcome the world." John 16:33
God will be right there with me through my trials.  He has overcome the world, and that is such an awesome and powerful thing to think about.  Through Jesus' blood I am forgiven and will live forever in Heaven with my Father and I need to focus on things of God, things of eternity and not things that change day by day.  As I studied the Bible today I found myself in Romans...My favorite book....
"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 12:2

What is God teaching me right now, through Jacob, through autism, through my hardships?  What does God want me to learn?  I need to keep praying that God will reveal His will for me through all this and know and trust that this is what's best for me and be content.  Everything that I do I need to do for the purpose of glorifying God and when I have an attitude of ungratefulness and selfishness I am totally missing out on the blessings God has for me and more importantly I am missing out on allowing God to use me for Him.  Who am I to think that I deserve more or different circumstances than what I have?  All that I know is that I do not know much.  LOL I am so glad God is in control and I am so glad that I have the Bible to show me that I will be truly unhappy as long as I try to live for myself.  I need to have a servant's heart, to my God, my husband, and my children, everyone... Praying to get over myself and for God to keep working on my heart.

Thank you, Lord.

Monday, April 23, 2012

Moms of children with autism, have you considered testing for fragile X?

I read a few articles today about fragile X.  Doctors suggested that Jacob get tested for fragile X when he was first diagnosed, but the genetic testing was around $5000 and we just couldn't afford it.  Also the genetic diseases they were testing for are not curable so we decided to wait.  However, after reading more about fragile X from the Autism Speaks site and some other sites today I have decided that I really need to get Jacob tested for it.  Testing for fragile X alone is much cheaper than doing them all at once.  If your child has been diagnosed you should consider testing for it.  Although there is no cure, the treatment is totally different because like down syndrome it affects the child forever.  This is the most common genetic disease that causes autism or autism like symptoms.  I feel like Jacob's delays and macrocephaly really resemble what this article is describing, however, his symptoms really fit autism as well. I would like to know either way because the treatment and goals are different.  My goal is to find a way to get him tested within the next two months.  Please be in prayer for us that we can find a way to get the blood work done.  Thank you in advance for your prayers.  Here is some info on fragile X

Should a child with intellectual disability be tested for fragile X?
Fragile X testing should be considered for any child who has been diagnosed with intellectual disability, developmental delay or autism. This is especially true if there is a family history of fragile X or some other form of intellectual disability from an unknown cause, or if the child has any physical features that would suggest fragile X syndrome.
What is my risk of being a fragile X carrier?
About 1 in 200 women is a fragile X carrier. Your chances of being a fragile X carrier may be much higher depending on your family history. If you have a family history of fragile X syndrome or of intellectual disability from an unknown cause, you are more likely to be a fragile X carrier.
What is fragile X syndrome?
Fragile X syndrome is the most common cause of inherited intellectual disability (historically called mental retardation). Infants and toddlers with fragile X are likely to have delayed development of body movement (called motor skills) and delayed speech abilities. For instance, boys with fragile X walk and say their first words when they are an average age of about 20 months old; unaffected boys walk and talk at an average age of about 12 – 13 months. A child with fragile X may not learn words as quickly as other children of the same age do. The child may also have difficulty understanding instructions. Boys with fragile X have more severe problems compared to girls with the disease.
Children with fragile X syndrome typically have more difficulty with behaviors, such as temper tantrums and hyperactivity. Many children with fragile X show autism-like symptoms, such as poor eye contact with others.
Although children with fragile X usually do not have unusual physical characteristics as infants, such features might appear as they grow older. A school-aged child with fragile X might have a long face with a prominent jaw, prominent forehead or relatively large ears.
Gender plays a role in the symptoms and severity of fragile X. Boys with the syndrome have moderate or severe intellectual disability, while girls with fragile X have milder intellectual disability. Boys are also more likely to have the unusual facial features mentioned above.

I know that its more likely to just be autism, but I am still in search of answers.  To be honest his head shape does resemble some of the more subtle pictures of kids with fragile X and it does become more significant during school age years.  I will obviously post when we get the blood work and the results as soon as we have them.  In the meantime, I am in prayer for the moms out there who have emailed me about just receiving the autism diagnosis.  I know how hard this time is for you.  Its confusing and there is so much information out there, some even conflicting with each other.  Just take it one day at a time and stay in constant prayer.  God can get you through this.  He chose you to be this child's mom for a great reason.  Always remember that you are not alone.  Your child is so blessed to have a mom that cares so much about them. 

“Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me – practice these things, and the God of peace will be with you.”

Philippians 4: 4-9

Wednesday, April 18, 2012

Our New "Normal"

Lately I have been trying to adjust to my new life of being wife, mom, homeschool teacher, and, most recently, Jacob's therapist. I can see why the ABA lady told me that most moms are not the best therapists for their own kids. Its hard. What am I saying? Hard is an understatement. It's demanding, tiresome, repetitive, irritating, and you get no immediate gratification whatsoever. I know that sounds terrible, to describe my own son's therapy, in such words, but that is the truth. I have to sit with him for hours and constantly do 5 second trials. For instance, I show him a ball and another object and ask him,"get ball" then I put my hand over his and make him grab the ball, then I praise him. After that I move on to a bucket and give him a Lego and say,"put in." I usually use hand over hand and force him to put it in. Then I praise him. Then I get a light up object and wiggle it by my face and say Jacob and if he looks at me or the object I praise him. Then I give him a frisbee and I put a frisbee and something else in front of him and ask him to match. Then I usually put my hand over his and make him match the frisbees. Its little tedious tasks that I have to do over and over and over all while making sure my other kids are busy so they don't interrupt and while Jacob is throwing himself profusely all around because he doesn't like to do what he doesn't want to do. The first few days were easy. The work is easy. It isn't hard to do little trials like that. The irritating part is doing it over and over and over for hours and hours everyday. The demanding and tiresome part is not knowing how to deal with Jacob's extreme temper and tantrums. He has NEVER been a difficult child. In fact, most people who watch him in the nursery say he is the very sweetest. He keeps to himself and is very quiet. I guess they have never tried to make him do something he didn't want to do. Therapists have asked me if he has a temper and I always said NO with a huge sigh of relief. Well, I was wrong. WAY wrong. His temper is coming out more and more every day. But, as one of his therapist has told me, having a temper about it is ok. No child wants to be forced to do things, so its kind of "normal" for him to be fighting me. Its hard being a mom that spanks to not just spank him all the time for the fits. I think most of my friends would suggest spanking when he throws fits. What people don't understand is that he doesn't have words. He can't communicate that he wants a drink. Can you imagine if you were so so thirsty and you had no idea of how to communicate that to anyone. You couldn't sign it, or speak it, or get it yourself. All you knew how to do was scream.   Then imagine no one knew why you were screaming.  That is the life of a non verbal child with autism. So I have to patiently try to show him what to do and how to tell me in his own way. We have started using PECS. He is doing well in the beginning stages, although he is not differentiating between two totally different pictures yet. He just knows that if he is playing with something fun and I take it away and he touches the picture than I'll give it back. That is the first step. We are really working hard to help him learn and reprogramming his little brain.

So that is the new schedule for us. That's our new "normal". I keep feeling like I am in this dream and one day I am going to wake up and all this autism stuff is going to be a thing of the past or just something I made up. At Easter my family, my brother and sister in law, her parents, all the kids and my mom and step dad were all eating at the table. Everyone was sitting down eating and Jacob started screaming and screaming. So I let him down and then he began his running in circles pattern. He makes a path and stops at nothing to continue running in the same pattern over and over. I jokingly said," We will just all have to get used to Jacob running around the table at these events".   In my heart, though, I was just falling apart. I want NORMAL. But that isn't the life God has planned for us, at least not right now. I have to continuously keep a  thankful and content heart. At the Spring tea at church I was reminded of so many things.  God really used that day to teach me a lot.  I  will have to blog another post about the tea, however one thing I was reminded of was....

"I can do all things through him who strengthens me." Philippians 4:13

I can be a joyful mom to an autistic child, I can joyfully serve the Lord, teach my children, and be Jacob's therapist and be confident that I can lean on Jesus during this difficult time for strength and patience and guidance. In every circumstance I need to give Him praise. After all, God has blessed me with 3 of the most wonderful children I could ever imagine. I am so thankful for a therapist willing to teach me and a wonderful child to teach. I love him so much. I just have to get used to our new "normal".

Monday, April 2, 2012

Jacob's yearly evaluation

So today was a BIG day.  For starters and most importantly, my baby girl turned 9!! I can hardly believe I am a mom to a 9 year old.  Secondly, today was national autism awareness day and Autism Speaks' light it up blue day.  Next, I got my first few hours of training in ABA therapy to become Jacob's therapist.  Lastly, Jacob got his yearly evaluation from ECI.  ECI, which stands for early childhood intervention, is a statewide program for families with children birth to three with disabilities and developmental delays.  For a while now I have been wondering how he compares to the average 22 month old.  This test covers everything from communication to adaptive to personal-social.   They also send his test information to the public school system to get him qualified for special education at age 3.  All 3 therapists agreed that as of now he would qualify for special education, which I figured.  The test tells what age he is equivalent to compared to an average child.  His test scores are as follows:

Adaptive:  13 months he is 38% delayed
Personal-social:  8 months he is 62% delayed
Communication:  6 months he is 71% delayed
Gross Motor:  25 months he is not delayed
Fine Motor:  8 months he is 62% delayed
Cognitive:  13 months he is 38% delayed

I knew his communication was behind and I knew he couldn't imitate, but I still sometimes question how severe he is.  I know other people that see him wonder it as well.  People say, "He seems so normal" or "He seems like every other kid".  I totally understand what they mean.  I think the reason people think that is because he is making OK eye contact and he walks around and plays with toys like other kids  Also, autistic kids don't really look any different physically.  But this was good for me to see.  I wanted to know exactly where he tested. 

Autistic kids at an older age are more obvious to an outsider.  They may be socially awkward or they may throw outrageous tantrums, etc.  So, if Jacob looks like every kid and acts pretty normal in a class what makes him different?  How do people know at this young of an age that he is autistic?  For instance, he has no motor imitation which means he doesn't wave hi or bye bye.  He doesn't play appropriately with toys.  He may see a choo choo train and lick it or hit it on the ground instead of driving it.  He has very little verbal imitation.  Just this week he has started babbling dada sometimes when I ask him to say dada, which is HUGE!! He has no idea what dada is though and he won't imitate any other sounds.  He can't request things like his milk or food or diaper changes or to be held, he just cries.  He won't even point at objects he wants because he doesn't understand that pointing will get him the object.  He has no noun identification, which means he doesn't know what a book is or what a ball is or a clock or a flower or mommy or daddy, etc.  He doesn't have a pincer grip when picking up small objects.  He also only randomly responds to his name.  Most times when anyone but his dad or myself call his name he will completely not answer.  All of these are typical behaviors for a 22 month old to be able to easily do, but he can't.  It was good information to find out about him, but it was also a little sad.  I keep wondering when the whole autism thing will be just normal for us and not a big deal.  I know for most moms, it happens when they're children overcome most of their "behaviors".  I do find myself much more calm about it though, I don't fall apart when I hear test results like this.  I don't cry all the time or worry about Jacob.  Autism is just this new part of our lives.  I am slowly learning to accept it.  I think maybe it'll always be a little sad, though.  We all want our children to be "normal", but hey Jacob is extraordinary.  I am deciding tonight to rejoice in his differences and thank God for his autism and what it has brought to our lives and our family.  It has brought us closer to friends and family and caused us to make new friends we may not have otherwise.  It has definitely brought us closer to the Lord and increased our trust in God.  It has opened our eyes to a whole different world filled with children with disabilities and mommies with children with disabilities and how we need to help them and love on them and encourage them.  It has made us so thankful for our children and their health and appreciative of things we once took for granted.  Wow, what amazing things God is doing through one little baby!!

So, I have to shout out to all my friends who sent me emails and picture texts of how they did the "light it up blue" today.  Thank you so so much.  It seems like there will have to be more research on autism after the new rate of 1 in 88 was just released from the CDC.  I am hoping and praying something will be done.  Over a million kids are affected by autism! That is just crazy.  The good news is at this rate it won't be able to be ignored much longer.  Almost everyone knows someone in their family or a close friends affected by autism.  I am praying for some kind of answers for my little guy.  I think it would be great to know exactly what causes it, even if there wasn't a cure.  I think just knowing would be a relief.  Please pray for answers.