Wednesday, September 28, 2011

The results are in and scary!

I just got off the phone with Dr. Melissa Jones, Jacob's neurologist.  She said that Jacob's blood work came back abnormal.  She said he showed elevated levels of almost everything and that the blood work needed to be repeated while fasting.  I can't remember if we were fasting the last time so we go back in tomorrow to the blood work that we did a few weeks ago.  Hopefully, this time the blood draw will go as smoothly as last time.  Remember, this is the blood work where they have to put the needle in, take the tourniquet off, wait 2 minutes, then take blood.  I asked her what diseases these tests were for exactly.  I have been doing a lot of research coming up with a thousand things and I wanted to be more clear as to what we were looking for.  She said that it tests for hundreds of diseases.  Additionally, that most of them are treatable.  In my mind treatable is a good thing, so I said that's good news right.  She said,"No.  We do not want him to have one of these diseases.  I know it sounds good that they're treatable, but they bring another number of problems.  Some of the diseases are life threatening and others will be difficult for him."  We are heading back to Texas Children's tomorrow.  I am feeling pretty sick right now.  I'm scared.  I'm feeling really scared. 
God in Heaven,
Please please please do not let Jacob have a horrible disease.  Sometimes I think that autism is all that I can handle.  I just don't know how to handle something that may take his life or threaten his quality of life.  I know that you'll equip me with what I need, but I am feeling so desperate right now.  I know that you are God and you have a greater plan for my family than I can possibly understand.  I am hurting and I just need you.  If its in your will, I just ask that you heal Jacob or that these tests were somehow wrong, but if its not I trust you. Thank you for my children, my husband, and my loving friends and family.

This song came on the radio right after I hung up.  I have never cried so hard.  I know the Lord sees me and loves me.

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Holy, holy, holy
Is the Lord God Almighty

Monday, September 26, 2011

Waiting on the test results

The nurse from the neurologist's office called me Thursday and said that half of the metabolic testing was in and that the doctor was back in town on Friday and hopefully could read the results and call me, but if not would call me Monday after she read them.  Still waiting on that call.  He could potentially have some life altering disease and they have the results and just haven't gotten around to reading them. AH!!! This is torture.  Deciding to pray instead of OCDing about it.  lol.

There are only a few new developments with Jacob.  He still is not answering to his name at all.  He is eating some more textures and making better eye contact, though.  He seems to be trying to play with people more and has developed quite the temper.  He also seems to be stimming a lot more.

Stimming is so strange to me.  Its hard to get used to seeing Jacob flapping or scratching his hands on everything, arching his back, pushing his head against things, biting me when he is excited or anxious, rolling his eyes into the back of his head and, most recently, standing on his head.  He does it all day long.  ECI says that he is doing it either because he likes the sensation of being upside down or because he can put a lot of pressure on his head that way.  The sensation helps him to organize himself.  The therapist suggest I find a hat or beanie that is really tight and see if that helps.  Therapists, parents, and doctors have mixed feelings about stimming.  Its publicly awkward, they need to do it to relax, yet if they do it too much they aren't learning anything and in classroom settings it can be very distracting to other children.  So how do you decide how much is too much and what to do to help them feel better? I noticed a child that was autistic in a classroom setting a while back.  He was having a hard time.  Its so disheartening.  He could't focus or follow directions, his classmates couldn't stop staring, and the teachers didn't have the resources to help him.  Do you tell the parents that their kids are too disruptive to participate?  Do you let the teachers get stressed out every week and keep the kids in the class?  My heart aches about it.  In fact, I haven't been able to stop thinking about it.  I think about my Jakey and all the other kids with autism and the difficulties they face and the hardships their parents go through trying to get them involved in community activities.  Autism effects 1 in 110 kids.  That is a huge number.  I wonder why there aren't more resources for these kids.  I have decided to pray specifically for areas of support within the local churches.  Two of the therapists that my son sees told me that 95% of their clients with special needs children do not attend church because churches do not offer classes for special needs kids.  Parents of kids with diabetes, hemophilia, mental retardation, autism, physical disabilities, etc need special childcare workers to watch their kids.  These parents need to have a church family, being loved on, and need to be hearing the Word.  These parents need support and the freedom to worship where they can be fully attentive and not fearing for their child's safety.  I know that every church wants to offer these services, but may not have the ability or funding or resources.  I am going to try and help where I can within our childhood ministries.  Won't you ask your preacher or childcare director to see if anything can be done to accommodate special needs families?  I asked the director of childhood ministries in our church about it and now she is trying to implement a coaching program.  This is a volunteer who can follow a child into their class and care for them as needed.  While this is great for kids with mild disabilities, its not enough for others.  Hopefully one day we can even have a classroom to accommodate the more severe special needs children.  What an awesome thing that would be to offer to local families.  If you know how to work with special needs kids I encourage you to volunteer at your church.  Imagine the life change you could make in the lives of those families for just an hour and half of service.  Our Jacob doesn't need this kind of care yet, I don't know if he ever will, but I am so thankful that there may be something in place if he does. 

We sold our house! Not only did we sell it, but we got full asking price.  That rarely happens.  We are just so amazed.  God has been so awesome in blessing us through all of this.  This whole autism situation has been so humbling to my husband and I.  First of all, Jacob's therapy costs much more than a house note so we had to put our house for sale and sell basically anything of value that we owned to pay for doctors bills and therapy.  We are totally OK with that, don't get me wrong.  God provided this house and all our stuff so if we can't have it anymore that's OK too.  Cret has a great job, so we aren't going hungry or anything, we just can't afford two house notes (house + therapy).   It is humbling though.  We are grown ups moving in with my mom.  Of course we want our own place with privacy.  Luckily, my parents are so excited and we have a lot to offer them help wise so I think it will be a great thing for everyone.  Most importantly we can get Jacob the help he needs until he doesn't need it anymore or until something else comes up as a way to provide help. 

By the way, our team is still accepting donations for the Autism Speaks Walk on October 22.  All of the money donated goes to autism speaks to fund research and help families in need.  The webisite you go to in order to donate in Jacob's name is We are very close to our $1,000 goal.  A huge thanks to all that attended my scentsy fundraiser in person or online.  That got us so close to meeting the goal!

I have to add a big enormous thank you.  We have recieved so much support in so many unexpected ways and we are beyond thankful and just in awe of how God has shown us His love through you all.  I don't really know what to say other than thank you.  All of the help and support and love has brought us so much joy and happiness and encouragement. 

This process is still tremendously difficult for me, I still go through days where I feel so alone and so helpless, but I know that the Lord is changing me so much.  I would have never thought twice about kids with special needs before.  In fact, it was hard for me to see past the day to day struggles of our family all together, much less any greater need.  True, I still let the difficulties of our situation get me down from time to time, but I'm much better at seeing God's hand at work now and just praying and letting it go.  Jacob is so wonderful and such a blessing.  I love him so much.  I just sit back and watch my children in amazement and filled with joy.  Jacob is a happy baby.  Jordan and Tyler are so happy. Autism isn't going to keep us down.  Finances aren't going to keep us down.  We trust in you, Lord. 

Thursday, September 15, 2011

Sign Language vs PECS

(This pic was at the allergist. He screamed and screamed.)
I recently took Jacob to the allergist to test him for food allergies.  I have heard that many people put their autistic children on the GFCF diet and see amazing results in their children's abilities, not like superhero stuff... LOL... Their kids just seem more "out of the fog" and start to speak or not have as many tantrums. I have also heard that many doctors think that the diet is not good and very rarely effective.  So I decided to be on the fence about it.  I decided to get Jacob tested for allergies to dairy and wheat before trying a difficult diet.  We went to an allergist in Humble who immediately asked me if Jacob had hydrocephalus.  I didn't realize his head was so big and obvious.  I guess because people don't usually see someones baby and tell them how big their head is.  So, as it turns out, he isn't allergic to any of the foods they tested for, including wheat and dairy.  I must say, Cret and I were disappointed.  Sounds strange, huh?  The idea of Jacob's symptoms getting better with just a diet, even a crazy hard diet, was exciting.  It was something to look forward to and hope for.  I left feeling sad.  The doctor called "the diet" crazy quack medicine and kind of laughed at me for thinking it could help.  He really hurt my feelings.  Don't think I'll go back to him.  Anyways, a therapist for Jacob asked me if I wanted Jacob's main form of communication to be sign language or pictures (PECS).  I was thinking, "I want it to be out loud", but I told her sign language.  She then went on to tell me the benefit to each and I thought it was interesting enough to share with all you moms considering both. 
Sign Language   
BENEFITS: Its usually easier to get them to speak from signing.  Its always used with words and its harder than talking, so sometimes they just want to go ahead and say the word. 
DRAWBACKS: Everyone who cares for the child needs to understand sign language and also have the same signs for each word.  Otherwise, the child is signing and not getting the right result and therefore it is not working for them causing more confusion and frustration.
BENEFITS: They can take their pictures with them everywhere, so everyone knows what they are saying.  It is very easy to learn and understand and no one needs training in it. 
DRAWBACKS:  You have to take pictures of everything and you can't lose or forget them.  Sometimes, with a bad therapist who isn't emphasizing the words and sounds with the pictures, the kid may not want to ever stop using the pictures and learn to talk.

After careful consideration, I changed my mind to PECS.  I want Jacob to easily learn a language to be able to communicate with me.  He doesn't even know how to clap, so I can't expect him to learn enough signs to be able to communicate with me.  Also, I have been trying simple signs for months now and he hasn't picked them up.  Additionally, I know it isn't practical to think that my mom, dad, brothers, sisters, babysitters, child care workers at church and other children will learn all the signs as well.  I don't want him to get frustrated, either.  My friend who has an autistic son used PECS and within a year he was speaking, so I feel confident in my decision. 

I was thinking the other day that at only 18 months Jordan, my daughter, was speaking in full sentences.  I mean like, "I poo pooed could you change my diaper?" I know that's not typical, but I would be so grateful to even get an intentional "momma" or "dadda" by age 2.  I can't even get Jacob to clap and it is so frustrating.  Tiny little babies learn to clap.  I know he wants to, he loves when I clap.  The way it was explained to me is that he sees my hands as objects and so he uses my hands to clap, not even realizing that his hands could be clapping.  I think that is so strange since I use his hands to clap.  Immediately after I clap his hands he either puts his hands down or just squeezes them.  So I'm still waiting patiently for a clap....Meanwhile, Tyler, my two year old won't stop talking.  He just talks and talks and talks and then talks, but as crazy as it makes me I always have to stop and thank God because, after all, he 

I think I wanna share this song I keep listening to over and over.  Man it just puts a huge smile on my face everyday.  Its been one crazy hectic day after another lately and I just really love it....Maybe it can make you smile...

Tuesday, September 13, 2011

Update on Jacob

Jacob has been pretty sick this past month.  I have been keeping a journal and in the past month he has had fever and been sick every day but 6.  He had bronchitis, then unexplained fevers, and now croup.  I asked the doctor why he is always sick, but she just said it's his immune system.  She also said that if he keeps having fevers without other symptoms we may have to look into it.  That is why it's so important to keep a medical journal.  Had I been keeping one for the past few months we would already be looking into it, because he always has unexplained fevers.  Tonight, he still has croup and just threw up all over his daddy.  I found it humorous, but Cret was pretty grossed out.  Poor guy.  Please say a prayer for little Jakey and for answers from the doctors.  Tomorrow, we go to the allergist to see if he is having any allergy problems.  Hopefully, I can get him to be still for the test. 

One of Jacob's therapists asked that we get him a chair for his therapy so they can work on getting him to sit and possibly obey simple commands like NO, GO GET, SIT, etc.  Sounds simple enough, right?  Not for a family with an autistic child.  I couldn't get him the typical child's chair because he arches his back and throws his head back and would get hurt in a regular chair.  So I started researching and finally decided to go to Toys R Us.  There I found 2 choices that were reasonably priced.  Both low to the ground with a back and arms and made of foam, but one covered with a soft plush and one with a spandex type material.  I must have stood there looking at the two of them for ten minutes.  See, Jacob stims on velvet material.  Stimming is repetitive body movement that self-stimulates like hand flapping, spinning, hitting their head on things.  Jacob is a hand flapper and he arches his back and throws his head backwards, even in a situation where it will hurt him.  He totally loves velvet so I was wondering if it would be good to get him the chair he loves or to get him the one he doesn't like.  I called both therapists that didn't answer and then my friend Tiffany who has an autistic child.  She told me that they stim to fill a need so she would get the one he likes even though we have both heard that they aren't learning when they are constantly stimming.  Then I called my sister who said, "Allison, what if they only had one?  You would just get that one."  Hahaha I really need to chill out.  IT IS JUST A CHAIR!  So I bought the plush one and the therapist said he did great today and only flapped his hands on it for a minute and then stopped.  I was thankful for that. 

We finally got to go to Texas Children's to get the blood work done last week!  The day before we went I had a friend/mentor from church over and after talking she asked me if there was anything specific we could pray for.  I asked her to pray that the nurse would be able to find a vein right away.  Throughout Jacobs life we have done numerous blood draws for surgeries, illnesses, thyroid tests, putting IV in, etc.  Never once have they found a vein on the first try.  Actually, they usually put the needle in then move it in and out and all around to try a vein, burst it, then move on to the next arm.  After his MRI he had 3 different bandages from terrible attempts.  Who knows how much they wiggled that needle in each arm before moving to his hand.  We use little heat pads to get the veins out and everything.  I don't know whats going on with his veins, but its just one more thing that just makes me crazy.  Its a horrible experience every time.  He is in major discomfort, screaming and crying and sometimes it makes me cry.  So with all that said she prayed with me.  She asked God to help the nurse be steady and find a vein on the first try.  She said God please show Allison that you are in control and let Allison just know and thank you right then and there when they do it.  Its funny, but I remember thinking about her faith in that moment.  She said that prayer with total assurance that God would follow through.  Well, we got into the room and the nurse said that we had to take one tube of blood, then take the tourniquet off, leaving the needle in the vein for two minutes, then draw the second tube of blood.  She said that the tourniquet can make a false positive.  I got very nervous for a second and told them that this would be difficult because he hates being strapped down and his veins are tiny, but for some reason I just chose to trust God in that moment instead of panicking.  They put heat pads on him because they couldn't feel a vein for a few minutes and then the nurse put the needle in and found a vein! There were 2 nurses with me in the room and we all stood there super silent as she got the first tube, then she took off the tourniquet and he started to freak out.  I began singing patty cake and the nurses chimed in with me.  We all sang to him for 2 minutes and then she got the second tube.  It was amazing!!! Immediately I shouted out, "PRAISE THE LORD! Thank you Jesus!"  One of the nurses said God is so good and the other agreed.  It was awesome.  God was in that room with us, watching my precious Jacob and telling me "Allison, I love you.  I'm in control.  Trust in me."  Later my friend told me, "Isn't it humbling to experience our Father's concern even in the little things?"  Its so true.  He really loves us and he really cares about us.  God is genuinely concerned with YOU.   I'm in total awe of how God has been showing me His love and grace and power lately. 

Tuesday, September 6, 2011

Joy and Peace

My heart is heavy tonight.  Jacob has been sick with off and on fevers for a month, spitting up, refusing to eat and having tantrums, and most recently hyperventilating at night.  Sometimes I feel like when I ask for prayer people must be thinking I am making this stuff up because it is just so much so often.  I am growing tired of sicknesses and fevers and doctor appointments and therapy sessions.  All of this has just begun and I wonder how am I going to make it through a life time of this?  Then I remember that I have Jesus to run to.  I open my Bible and refresh my mind.  In everything I read, God reveals something new that I can apply to my life and my situation.  I feel restored and ready to take on the next day.  Tonight while my husband was with friends I had to take my 3 kids to the grocery store.  It was getting pretty late...maybe 7:30 and they had all had their baths and were in their pjs and acting wild.  A woman with 2 little girls walked by me and asked, "How do you do it?  3 kids... How in the world do you do it?  Jesus Christ."  When I heard those words muttered in that way it hit me in my gut...hard.  Nothing makes me more upset than when I hear people say those words in that way.  So I just stood there and then managed to mutter "I love it".  She was standing there looking at me intent on hearing my answer and that's what I said..."I love it".... UGH!!! Now I can't stop thinking about that woman, desperate for answers.  What I should of said was, "Yes Jesus Christ is how I get through it.  He is my strength and He gives me every tool that I need to be a mother and a wife and a friend through His Word in the Bible and keeps me sane.  He has saved me from my despair and given me new life."  Even a fraction of that would have been better than what I said.  I don't know if I will see her again in the grocery store, but you can bet if I do I will tell her the TRUTH.  People constantly tell me that they don't know how I do it or that I am so strong, but I am nothing.  I am so weak. I lose it every single day and it is Christ and the Bible that brings me back to peace and joy.  I could not go through this daily pain and still have the happiness that I truly do have without having Jesus Christ in my heart.  He is who keeps me dancing every day with my children and laughing and singing and praising.  So I have to tell every mom out there that I know, I encourage you to turn to Jesus in this tremendously hard time.  He can be your refuge.  You can know a joy and peace that surpasses all understanding.  Jesus Christ was sent to die for all of us sinners, to reconcile us with God, and if we believe that He died for our sins and ask Jesus to live in our hearts, we can have eternal life with God in Heaven.  Isn't that awesome?  Not only can our sins be forgiven, but we can have eternal life with our heavenly father.  More so, God can give you a strength you never believed possible and a peace you could never have otherwise.  I encourage you to ask Jesus into your hearts if you haven't and if you to Him.  Also, don't be scared to run to fellow Christians for help.  A friend reminded me today that sometimes people just don't know how to help you.  We moms have to put our pride away and our "we can do it all" attitudes aside and just ask for help when we need it.  I know I need help sometimes.  Its very hard to ask to for it or to even know what to ask for, but I will be attempting this more I think.  Please share ideas with me if you have any. 

I read a beautiful verse in Colossians today...
"May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light.  He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins." Colossians 1:11-14

Thursday, September 1, 2011

Getting the blood work!!!

The nurse at our neurologist office called and said that the insurance company told her today that the blood work will be covered!!! The genetic testing, however, will not be.  I asked her exactly why we need these tests.  If you have a recent diagnosis you may be wondering as well and here is what they told me.  The blood work tests for metabolic diseases, which is basically the way your child uses their energy.  1 in 160 kids with "autism" actually have a metabolic disease that can be treated with medicines, supplements, or a special diet and it can cure or fix the autistic symptoms.  Thats why you hear of people that put their kids on the gfcf diet and their kids are cured or nearly cured.  Additionally, that's why some kids have no response.  So I am so excited to be getting this testing done.  We will be heading to TX Children's today or tomorrow for it.  The genetic testing tests for the things I have mentioned before such as mental retardation, fragile x, etc, but also 25% of autistic kids are missing a chromosome.  She told me that while this isn't life or death its good to know in regards to therapy and treatment.  There is no cure or even medication for this, but it lets the parents develop a better plan for their child.  I am assuming maybe an easier therapy plan or something.  I would really like to get that testing done one day, but for now we can't.  I believe the bloodwork was covered because of Jacobs macrocephalis, which is a medical condition that can be the cause of the metabolic disorder.  The tests will take 4 weeks for results, so please pray that Jacob may possibly only need a change of diet.  That is best case scenario.  I am preparing myself for both though.  I am just so happy we are getting this blood work done and so thankful that God provided a way!!