The Dreaded GFCFSF Diet

I have to admit, before Jacob, I was the least "green" "organic" "natural remedies" person in the whole entire world.  I actually thought it was all a little silly.  Don't judge me, I am just being honest.  It seemed like a lot of fuss over nothing.  Some of the people that I heard talk about it seemed like it consumed all of their time.  I didn't want, nor ever will want, food to rule my life.  

 

 Jacob has some serious medical issues.  He is always sick and he has 6-8 bowel movements per day.  Sorry if that is just way to much info for you, but in the autism world, digestion problems are a real serious issue.  That's why you hear a lot of moms choosing to try a GFCF diet.  I have tried the diet before, however the rest of my family remained unchanged and there was a pretty good chance that Jacob still got some in his system.  GFCFSF stands for gluten free,casein free, and soy free.  Casein is a milk derivative that is in dairy, but also in a lot of other foods that most people wouldn't consider dairy.  These ingredients are the most common food allergies.  I did have Jacob tested for allergies and he didn't show any allergic reactions, but I have come to understand that an intolerance is difference than an allergy.  The doctors can't seem to find out what is wrong with Jacob, yet they tell me that 6-8 bowel movements per day is not normal or good.  Last time I tried the diet I was checking for behavior changes.  This time I will be checking for digestion changes.  I am not looking forward to it.  It's hard and it stinks.  I hope we don't have to remain on this diet, but I need to try because it may make Jacob much healthier and I want to be feeding him what's best for him.  I have also heard many testimonies of people (including doctors) changing their diets and improving their overall health tremendously.  Veggies are God's natural vitamins that help us grow and fight infection and increase brain development and function.  I have already increased our organic, whole foods a lot and am trying to limit processed foods.  For our family it has been a slow process because I don't want it to be something I have to think about all day.  Beginning tomorrow we will all be on a GFCFSF Diet in our home.  Cret and I will make exceptions when we go out to eat, as will Jordan when she is at her Dad's house.  Jacob and Tyler will be on the diet all the time.  I am looking forward to seeing if this makes a difference in his health.  I will post anything important if it arises.  Pray for our family during this transition.  This diet really isn't any fun for any of us, but we are all going on it to prevent cross contamination, and also because Jacob eats anything he can find.

 

If you are a family on this diet and you know of any places that you can eat out please let me know.  We really like to go out to eat after church or on the weekends.  Also, there are so so many GFCF products out there and last time I wasted money on some that were totally gross.  My kids really enjoy pizza, yogurt, and cheese crackers, but obviously these are not GFCF, if you know of any alternatives please let me know.  

DECODING AUTISM

 

Decoding Autism In Our Home

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

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

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

 

Psalm 139

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

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

    you discern my thoughts from afar.

3 You search out my path and my lying down

    and are acquainted with all my ways.

4 Even before a word is on my tongue,

    behold, O Lord, you know it altogether.

5 You hem me in, behind and before,

    and lay your hand upon me.

6 Such knowledge is too wonderful for me;

    it is high; I cannot attain it.

 7 Where shall I go from your Spirit?

    Or where shall I flee from your presence?

8 If I ascend to heaven, you are there!

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

9 If I take the wings of the morning

    and dwell in the uttermost parts of the sea,

10 even there your hand shall lead me,

    and your right hand shall hold me.

11 If I say, “Surely the darkness shall cover me,

    and the light about me be night,”

12 even the darkness is not dark to you;

    the night is bright as the day,

    for darkness is as light with you.

 

13 For you formed my inward parts;

    you knitted me together in my mother's womb.

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

Wonderful are your works;

    my soul knows it very well.



A Hard Day

So, you know those days that I have talked about that are just hard and emotionally draining?  Yep, today was that kind of day.  We started Jacob's official evaluations on Monday.  Monday, Cret and I had a 2 hour interview with the evaluation team discussing Jacob and what he can and can't do.  Today the speech and developmental teachers assessed him.  Luckily, Mindy (Jacob's BCBA) came with us because Jacob was not able to do many of their tasks at all.  Mindy was able to show them what Jacob is capable of within a structured learning environment.  The reason we brought Mindy was because she believed that it was likely Jacob would test so poorly that he may be put in the life skills class.  It is still possible that they will put him in that class. The problem with that class for Jacob is that it isn't structured learning and if the children aren't behaving in age appropriate ways, it will only teach Jacob the wrong way to behave.  We are wanting him to be in a SCD (severe communication disorder) class or something similar.  It may not seem like a big deal, but to me it is a huge deal.  Our insurance doesn't cover the therapy that Jacob needs, the therapy that so many research studies have proved to be effective for kids on the spectrum.  Getting him in to a SCD class is our closest thing to actual ABA therapy.  Right now, he gets 4.5 hr/week of therapy.  School is about 15-20 hr/week I believe.  I know those classes aren't 1 on 1 ABA, but we would be so grateful for it, nonetheless.   

In the evaluation they were asking him to match a real cup to a picture of a cup, which he was not able to do.  They also gave him a baby doll and a bottle to see if he would feed the baby on his own or after they asked him to.  He was terrified of the doll and kept throwing it.  He just fixated on the bottle.  They also gave him a top and spinned it to see if he would request them to spin it again.  I was so happy to see that he eventually gave the top to the teacher, however he did not make eye contact or make any gestures to get her to spin it.  He repeated many sounds and words for them which was excellent.  The teacher noted that all of what he said and played was what he had learned from structured teaching.  There wasn't much that he was able to do that hadn't been taught, like pretend play or random words for requests.  She said that it told her that a class with a lot of free time may not be best for him, since he doesn't do anything productive in free time.  He spent some time self stimming.  They did many trials with him to test his abilities.  He kept looking at me and then at Mindy over and over.  I could tell he was uncomfortable and didn't understand what was going on.  He was very scared of a couple of the toys they introduced.  They continued to work with him and  then I went out in the hallway with the teacher and she asked me numerous questions about what he was capable of doing and saying.  That's pretty much when I lost it and started crying.  This is torture for me.  If I am going to be honest, I just don't know how ready I feel for all of this. I don't feel ready to accept that I am a special needs mom and probably will be forever.  I am just so sad right now.  I don't want things to be so hard for Jacob.  I want him to learn easily.  It just feels like something is crushing my chest today.  I am so sad for him and I guess I am feeling sad for me too.  All I could think in that room was, "My poor baby, my poor precious baby, I would do anything in the world to help you.  God please show me how to help him learn."  It is ripping at my heart to watch him struggle with things that are so easy for most people.  I just want to have answers for him.  I want to be able to look at my son without a thousand questions and thoughts running through my mind. 

When I left, I sat in the parking lot and just prayed.  I know that this is a situation that I can't handle on my own.  God has allowed this situation in my life that feels so hard and so heavy.  I am so thankful for that.  It sounds weird, but I know God is showing me right now that I cannot do this without HIM.  It's a reminder that no amount of schooling or mothering or teaching or skills that Jacob learns or anything can bring me true joy or get me through life, except HIM.   I am so thankful that God allows me such obvious situations that remind me that life just isn't OK without HIM.  I also have to remember that the ultimate goal is for God to be glorified.  It is easy to think and say and type, but so much harder to trust and believe and act on as I am going through this.  Please pray for our family as we continue on this journey with Jacob and his placement over the next month.  God knows exactly what's best for Jacob and I am praying for peace no matter what that may be.  I truly believe God has amazing things in store for Jacob's life in order to bring HIM glory. 

Psalm 55:22 Cast your burden on the LORD, and he will sustain you; he will never permit the righteous to be moved.
Philippians 4:13 I can do all things through him who stregthens me. 
1Corinthians 10:13 No temtation has overtaken you that is not common to man.  God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.
2Corinthians 4:16-18 So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal. 
John 16:33 I have said these things to you, that in me you may have peace.  In the world you will have tribulation.  But take heart; I have overcome the world."

Cross references:

1. 1 Corinthians 10:13 : See ch. 1:9
2. 1 Corinthians 10:13 : [Dan. 3:17]; See 2 Pet. 2:9

I posted a song on my facebook and I wanted to share it with those of you who are not friends with me on facebook.  When I am having a very hard day or sad, I find myself repeating the lyrics "Thank the Lord, oh my soul, thank the Lord".  I am so thankful to be worshiping a God that is so powerful, fathiful, mighty, all knowing, loving, just, and trustworthy.  This song shows me some perspective when I am having a hard day.  Here is the link to hear it...

http://youtu.be/MtAmlO4cdhc
  For the beauty
For Your goodness
And Your wisdom, awesome God
Praise the Lord, O my soul
Praise the Lord

For You power
For Your honor
And Your splendor, Mighty God
Praise the Lord, O my soul
Praise the Lord

I will worship You
I will bless Your name forever
I will worship You
Bless the Lord, O my soul
Bless the Lord

For Your kindness
For Your favor
And Your mercy, Gracious One
( From: http://www.elyrics.net )
Thank the Lord, O my soul
Thank the Lord

For Your fire
For Your testing
And Your Spirit, Holy One
Thank the Lord, O my soul
Thank the Lord

For Your suffering
For Your anguish
And Your sorrow, Humble King
Bless the Lord, O my soul
Bless the Lord

For Your victory
For Your triumph
For Your soon coming reign over all
Lyrics from <a href="http://www.elyrics.net">eLyrics.net</a>



 

Autism across the lifespan



In one of my courses, we had to look over a large document about evidence based practices and autism in schools. I came across a section listing the symptoms of autism in all ages.  Most students commented in our class discussion by stating that they feel it is unethical for practitioners to tell parents that their child's autism will go away because it usually does not.  Most people associate autism with specific symptoms, usually those associated with early childhood and when those symptoms are no longer noticeable they hope that their child is cured or others assume the child is no longer autistic.  More often than not children do not outgrow their autism and this particular section discussed the symptoms in older ages.  Obviously, classic autism is still very severe and noticeable in older years, some of these symptoms are the ones that people don't always associate with autism.  Reading it took my breath away.  I, too, try to tell myself that Jacob will grow out of his autism or that his ABA therapy will eventually cure him.  I don't even need a doctor to tell me that, I just want to believe it. I do not think anything is impossible through God, but I trust that God's plan for Jacob is bigger than my own desires. What I want and hope for, may not be what happens.  Either way I will trust Jacob's perfect creator and know that whatever is in store for him is God's perfect plan for him and for our family.  Its hard to see how God can use this situation for His glory if I am in constant turmoil over it.  I want to be informed about what Jacob's future may look like so I am prepared to help him and be the best, most supportive mommy I can be.

 

 I wanted to share the information about "Autism across the lifespan" for parents and others to be able to read and to be aware of.  Also, I feel like there is such a lack of information in the media about autism and older kids and adults.    I must also state that every person with autism is a unique individual.  Some children may lose their autism diagnosis altogether and some may not.  I don't want this to be a discouragement to ASD moms, but more of a reference and possibly a preparation.  If your child had any illness, wouldn't you investigate what would happen and how to appropriately handle the situation?  I suppose that is how I feel about being educated on autism.  I am preparing myself to mother a child with autism for his lifespan, while hoping and praying that there is a possibility that he may lose his diagnosis.  My prayers go out to each and every ASD mom. 

 

This is very basic information on some of the symptoms of autism across a lifespan...

 

} Evidence-based Practice and Autism in the Schools

Autism Across the Lifespan

The symptoms exhibited by a student with ASD may change over time. A

child who receives speech services at age 3 may face very different communication

challenges by the time she reaches her high school years.

Each developmental stage brings its own challenges for all children, and this holds

true for students on the spectrum. You are more likely to see certain symptoms in the

toddler years, but these symptoms may be extremely subtle or non-existent by the

time the student reaches adolescence.

This pattern of development can be very confusing for individuals unfamiliar with the

autism spectrum because they expect the same symptoms to remain fairly constant

over time. In fact, some of these individuals may doubt whether an ASD diagnosis is

warranted due to preconceived notions about what a student with ASD should “look

like” at certain ages.

Table 1 lists some of the various challenges that students with ASD may face across

the years they are served in the schools. It includes an overview of symptoms commonly

observed at different stages in a student’s life. We recommend sharing this

information with colleagues who may have less experience working with students on

the autism spectrum.

 

National Autism Center

 

Domain

Age

Symptoms

 

Social

 Development

Infant/Toddler

•May avoid touch

•May isolate from groups

•An infant may not imitate facial expressions

•Toddlers may not laugh in response to parent’s laughter

•Failure to respond to the emotional needs of others

 

Early School Years

•May not engage in social games

•May prefer younger children

•May appear “bossy” when playing with other children

 

Adolescence/

Early Adulthood

•Gaps in social skills become even more apparent

•Dating challenges

•Social challenges sometimes related to issues such as poor hygiene (e.g., rigid adherence to rules

regarding frequency of bathing)

 

Communication

Development

Infant/Toddler

•May lack speech

•Immediate or delayed echoing of other’s words

•Use of scripted phrases

•May not respond to name

•Unlikely to use gestures

 

Early School Years

•May sound like “little professors” who are lecturing on a topic

•Conversations are one-sided

•May not see how their behavior hurts others

 

Adolescence/

Early Adulthood

•Poor understanding of abstract concepts

•Challenges in understanding jokes or slang

•May mimic language from television or movies, placing them at risk for problems at schools (e.g.,

say “I’m going to get a gun and kill him” as a means of expressing anger or frustration)

 

Restricted,repetitive, nonfunctional patterns of behavior, interest, or activity

 

Infant/Toddler

•Repetitive motor movements like hand-flapping, finger flicking, rocking, etc.

•May line up toys for visual examination

•May categorize toys instead of playing functionally with them

•Some rigidity in routines

 

Early School Years

•Rule-bound

•May create own rules to make sense of the world

 then have a hard time managing when others violate these rules

 

Adolescence/

 Early Adulthood

•May engage in elaborate rituals to avoid motor tics

•May obsess for hours about a brief encounter with a peer

 

Other

Infant/Toddler

•Tantrums

•Sensitivity to light or sound

•Feeding challenges (often associated with texture)

•Safety concerns (e.g., may run outside in bare feet into the snow)

 

Early School Years

•Academic concerns

•Difficulties with concentration and irritability due to sleep or communication problems

•May be disruptive during transitions

•May be clumsy in sports activities

 

Adolescence/

Early Adulthood

•Symptoms of depression or anxiety

•Acting out

•May not understand rules regarding sexual behavior (and may be set up by peers to violate these

rules)

•Increased risk for seizures (associated with onset of puberty

Depression

For my research proposal I am studying the depression in the parents of autistic children.  One study shows that around 80% of mothers show severe depressive symptoms the year of diagnosis and about 40% in a follow up a year and half later. Additionally, the severity of the childs problematic behavior and the financial toll that the diagnosis places on the parents are strong indicators of the severity of depression. Is it just me or do ASD parents need some serious support? In these studies, parents that recieve support from local groups tend to have less stress induced depression.  I see this as a wonderful opportunity for the Christian community to show some compassion and the love of Christ.  Just a thought.  I love you ASD Moms. More importantly, Jesus loves you and as I read in a recent blog God knows your suffering more than anyone.  I shared the blog post, but for those of you who didn't get a chance to read it I will paraphrase...

You, as the mom of a child with a disability,  are raising a child who struggles with ridicule, difficulty in everyday situations such as crossing the street and brushing teeth, severe communication delays or innappropriate speech,  and extremely challenging behaviors... You may feel alone.  You may feel as though no one could understand or sympathize with you.  However, God does understand.  He watched as His son, Jesus, suffered ridicule, extreme torture and eventually death on the cross.  No one better understands you.  Our loving Father is there for you, lean on Him.  Put your trust in Jesus because He is the ultimate provider. 

So thankful for our church family and the support we get often.

To view the blog that I paraphrased visit  http://www.gracecoversme.com/2012/06/familiar-sadness.html it is well worth your time

Pre-Evaluation Screening

I wanted to document today's events so that I have a record of each step in the special ed process.  I was feeling a little discouraged after I left the nurse's office, but I am praying that God has Jacob's situation under control.  All I can do is trust in Him.

 

Today was Jacob's medical screening with the school nurse at Hidden Hollow Elementary School.  This is the first step in the evaluations for special education.  When we got there she checked his ears for infections and they were clear! Thank you, God.  However, he couldn't do any of the testing.  They had a chart with lines of letters on them for the vision testing.  He can't read letters or say which direction anything is and he also can't follow even the simple direction to look at the board.  He wouldn't even know what the board was.  So then she proceeded to see if he was able to track things with his eyes.  She used a light to see if he would track it and he did.  She then asked if he could track other things besides lights.  She tried a toy, a sticker, and something else.  He wouldn't even look at those items for a split second.  I got out my iPhone and turned it around to the backside and he tracked it.  I told her that it would have to be something that he is interested in to track it.  Based on those observations she passed his vision test, although she said she hopes that they can do a better screening later when he is older.  She also rang a bell when we got there to see how he would respond.  He didn't even turn in the direction of the bell.  She did the same for two more objects that made noises.  He didn't respond.  I told her that he has had his hearing checked 3 times and likewise with vision he will only respond to noises that interest him.  Regardless, we have to make an appointment with the district Audiologist to double check his hearing.  When we got home I whispered,"Jacob here is the Ipad" and he came running.  I know his hearing is fine.  I am glad they are checking him to be thorough though.  He also banged doors the entire time we were there.  He wouldn't look at her when she called him and didn't respond to most things that I said.  I think the new environment was hard for him. 

 

I know that this journey with special ed isn't going to be easy for me.  Friends have told me it is hard.  One friend told me that she cried every single day after she dropped her son off at class. I can see how that could happen.  He acted like he was completely incapable of listening or learning in the nurse's office.  Each time we do evaluations or anything like this it becomes so obvious that he is so far behind.  It's just not exactly what you hope for as a mom.  Each day is a learning experience for me.  Each time I feel like this, I know I have to make a decision either to let my mind go into that dark sad place or to trust God and stay hopeful.  If this is His plan for Jacob, then I need to be on board.   I am just trying to focus on his strengths and trying to make sure that I see this whole process as something to aid in helping Jacob learn.  I want to stay positive, even through my sadness.

 

I wanted to update everyone on the garage sale.  We made $872.75! I can't believe how well the garage sale went.  What an awesome blessing! Thank you to all who donated.  Also, one of Cret's best friends and his sister donated $260 so we are already at $1,132.75.  We are $567.25 away from our goal so that I can get Jacob his genetic testing.  Once we do I will be sure to post the results.  Thank you again for your support.  God is so good. 

Yearly Evaluation

 

Jacob had his yearly evaluation from ECI today.  I wanted to share his scores.  In the "ADAPTIVE" category he is equivalent to an 18 month old.  He is 44% behind.  In the "PERSONAL-SOCIAL" category he is equivalent to a 15 month old.  He is 53% behind.  In the "RECEPTIVE COMMUNICATION" category he is equivalent to a 13 month old.  He is 59% behind.  In the "EXPRESSIVE COMMUNICATION" category he is equivalent to a 15 month old.  He is 53% behind.  In the "GROSS MOTOR" category he is equivalent to a 27 month old.  He is 16% behind.  In the "FINE MOTOR" category he is not behind.  Praise the Lord! In the "COGNITIVE" category he is equivalent to a 21 month old.  He is 34% behind. 

 

To explain these categories better.... adaptive is his self help skills.  Personal-social is how he interacts with himself, peers, and adults.  He scored at 15 months due to him finally playing with his brother. Receptive communication is how he receives and understand words.  Expressive is how he communicates his thoughts and feelings.  Gross motor scored low because he doesn't throw a ball yet, he only drops it, he doesn't jump from the floor, and he doesn't kick very well.  Fine motor scored great.  Cognitive scored low, but not as low as communication and social, which is promising.  IQ is highly correlated with adult success so I am very hopeful.  Cognition has to do with problem solving, attention, memory, understanding concepts like big and small, soft and loud.  He does not understand those yet. 

 

Certain categories scored higher than he really is due to him being able to do a few random things in the category, such as expressive language.  He can't express anything that he wants expect to be "all done" with sign language.  Everything else is randomly mimicking our words, however the way they did the scoring that counted as him being able to express his feelings.  Also, he scored higher in social because he plays back and forth with his dad and brother, although he won't with anyone else. 

 

His meeting with the school nurse to begin the special ed process is next Tuesday.  He currently has an ear infection that has gotten worse through the last antibiotic and today he was put on another stronger one that he hasn't ever had.  Please pray that his ear will clear up and that we can have simply 1 month of health for him.  April 3rd is his very first evaluation with the school district.  Their evaluations are much longer and more thorough so I am sure they will be able to determine where he needs to be for his class.  Please be in prayer that he will get the BCBA's class, because I feel it will be the most beneficial to him as does his current therapist.

 

This Saturday is our garage sale! We have had so many donations and I am hopeful that we will get very close to our goal for genetic testing.  Our goal is $1700.  I am hoping that we can 1/3 of that and I will have some more fundraisers and save until we can get the testing! If you have anything you'd like to donate please email me, or if you'd like to come check out the sale please come by! Jordan and her friends will be selling either snow cones or donuts to earn $ as well.  Thank you to everyone who donated.  It really means the world to us!