Overwelmed

This was a post I did in my personal blog, but I felt it was appropriate here as well.



My heart is broken in many ways...

I find myself overwelmed with autism information and theories once again, and it is hard to overcome the heart break.  I left Facebook for awhile to avoid all the negative talk about diet and our food supply.  Mentally, I just can't handle it anymore.  I'm sad that something I enjoyed needs to be taken away.  I miss talking about my kids, and posting pictures.  I hope the distraction passes with time.  I've noticed that when I want to go on FB, I do something more productive instead--like play with my children!  I pray I'm doing what is best for my kids, and that my time with them is spent well.  I truly believe that God gives us what we need to grow, and what we can handle.  I just wish I could feel 100% sure that I'm doing what is right for Aiden.  I second guess myself more and more each day.  I pray our Heavenly Father can give me peace in that regard, and that Aiden is one of those children that overcomes autism with love and therapy.  I'm so grateful for his progress!

Honestly, I'm really looking forward to the new school year.  I hope we can find a healthy routine that works for all of us.  It is so important that I get my workouts in, but working out at night is not ideal.  I got it done early yesterday, but the kids were in and out, which distracted me.  I wish I could find an hour or 2 for just me each day.  I will miss that next school year very much!  I need that time.  Praying we all find balance and happiness again...life is just too short to live it any other way!

4 1/2

Aiden will be 4 1/2 on Saturday!

Speech--Aiden asks for things appropriately now; "Little help please momma," "more cereal please."  He also says appropriate sentences like, "good morning" and "good night momma," or "bye dad".  When I put things away he says, "all done," and the name of the item I'm putting away.  Aiden still knows all his animals and colors, and he can spell his name when prompted with letters.  His vocabulary continues to grow.  However, when asked a question he will not respond. 

Potty training--EC has been working with Aiden since he was 3.  He finally started to feel comfortable sitting on the potty the beginning of this year, but never actually went.  Yesterday he peed in the potty for the first time!  He continues to sit on the potty, use toilet paper, and flush, but I'm not sure he actually understands what we want him to do.  Austin has been peeing on the potty very well, so I'm hoping that will give Aiden the push he needs.

Interaction-- Aiden and Austin play well together most of the time.  Austin likes to lead the way, and Aiden follows :)  As far as playing or communicating with other children, that still needs work.  I've never seen him trully interact/have a "conversation" with anyone but his brother.  He continues to hide in the garage during outdoor playdates most of the time.  I'm grateful for Austin.

Sensory--Aiden seems to continue to have sensory issues related to foods.  We eat a fresh fruit or vegetable at most meals, but Aiden won't touch it.  He knows the name of the food, but he won't eat it.  The only other sensory concerns I have are the moments when Aiden hits his head.  I hate that.  It bothers me because it screams "something isn't right".  I don't like to be reminded of that daily. 

Diet--I could put this under sensory, but it is so important to me that I'm seperating the 2 catergories.  I'm doing the best I can.  I try to limit his sugar intake, and provide the essential nutrients he needs to grow.  I try to include a source of vitamin A and C each day because he won't eat fruits and vegetables.  I discovered a new food that Aiden will eat--bacon!  We use to rarely eat bacon because it isn't a healthy fat, but it gives Aiden some protein and calories, and that is all I care about. 

Protein/iron/zinc/fat/magnesium/vitamin E--beef jerky, nuts/seeds, beans (he only eats baked, but rarely).  He rarely eats peanut butter (he did eat some of the peanut butter/chocolate/chickpea things I made).  He won't take an Omega 3 gummy supplement. 

Vitamin A--Fruit and veggie juice, sweet potato chips, rarely a homemade pumpkin pancake or muffin.

Vitamin C--Unfortunately, juice is his main source, but he also gets some from fortified cereal and 100% fruit snacks.

Calcium/vitamin D/protein/phosphorus--milk is his primary source of calcium and vitamin D, and it provides the majority of his protein for the day.  I give him 2-8 oz cups a day.  He doesn't need more than that.  He will also eat some yogurt.  I freeze organic yogurt sticks, and he will eat a whole one of those.  I will note here that Aiden STILL doesn't have any digestive issues.  No excessive gas, diarrhea, or apparent discomfort.  I would like to add a liquid probiotic anyways. 

B vitamins/folate-- come mainly from fortified cereal, which he eats every morning (GF Chex varieties and/or Kix without food coloring--too much sugar, but I gave in).  They occasionally come from whole grain bread as well, but rarely.  I don't give him crackers.  He gets enough of those at school and church.  That is where the majority of his gluten comes from.  I still haven't gone completely gluten free, because Aiden continues to sneak foods from people and our pet.  I will note here that I don't think it will make a difference for Aiden, but I would like to test it for at least 6 weeks.  Anything longer than that, and it would be hard to differentiate between Aiden's own progress vs. any progress made with the diet itself.  I don't know what changes I should expect from him.  Fifty percent of caregivers say the diet works, but they never state what behaviors it helped with!  Dietary changes help with digestive symptoms when food allergies/intolerances co-exist with autism, which is not uncommon.

Gut bacteria help produce biotin, and vitamin K...another reason I want to add a pro or pre-biotic.  Aiden gets most of his minerals from fortified cereal and nuts/seeds.   

Aiden gets plenty of fiber from popcorn and nuts/seeds.  His diet does lack significant potassium due to his low fruit and veggie intake.  He occasionally eats bites of the banana pancakes I make with buckwheat.  I give Aiden a multi-vitamin occasionally, but his cereal every AM is fortified with the majority of the nutrients he is lacking.  I don't believe supplements are a "cure all," so I don't waste my money on them.  Aiden is getting plenty of calories, fat, and protein in his diet.  He is growing well, and his skin is clear as a bell.  He is rarely sick.  If nothing else, I hope 5 years of education on nutrition is doing something to benefit my children! 

Marriage

Couples with special needs children have a 80% divorce rate...

Although I'm not a big fan of stats, they do have some merit.  I understand this one.  From what I've read from other parents of autistic children, 1 person usually does all the work, all the research, and all the worrying.  That person is me.  I feel pretty alone in all of this.  Abe is in his graduate program, and his focus is on that and only that.  One of his classes is on special education.  When doing the unit on autism, Abe came to me with all this knowledge that I already cried, stressed, and worried over...a long time ago.  We don't talk much about Aiden, or anything else for that matter these days.  

Honestly though, I don't think that is what is driving us apart.  I love being Aiden's biggest advocate.  I am willing to learn all that I can to help him.  I go to all the meetings I can, and read all the information that is available.  Abe gives Aiden a lot of love, and I appreciate that so much.  He needs his daddy and just as importantly, a stable, healthy environment.  My parent's divorce made me realize just how important it is for a child to have both parents in the home.  That knowledge alone will make me fight for our marriage!

I know I need to change my attitude, be more positive and encouraging, and make more of an effort.  I wish I could get there.  The only thing that would work to change my heart is to pray.  I do want to change, but it takes work that I just don't have energy for--especially when baby #3 comes along.  I'm very nervous that the transition will be rough for all of us.  

July 11th update: The above was written months ago, and I'm happy to report that Abe and I are doing very well.  I've decided to focus on the wonderful things about Abraham--not the things that frustrate me.  He has been very supportive and loving despite my anger and resentment over the past 3 years.  He is a terrific father.  He works hard, and wants to finacially support his family.  He values marriage and our commitment to our children and God.  That is what is important, and I'm happy to report that my change of heart has strengthened our marriage and commitment to one another!   

ABA therapy

July 11, 2012

Exactly a year ago today I posted on our experience at Mercy Options--our last hope at the time for intensive therapy.  I remember it very well, because July 11th is my birthday.  We were told by a physician, and Mercy Options staff that our insurance was now accepted for autism services.  Ironically, our appointment was exactly the same day a year later.  I thought this year my birthday "present" would be the gift of therapy for Aiden.  Unfortunatly, I was very wrong.  When we arrived today, they didn't have us on the schedule.  I cried softly and told them that we had already waited a year.  "We already know he is autistic.  I just want him to start therapy" I said.  The receptionist called someone to come talk to us.  AGAIN, I told her our story and what insurance we had.  I filled out the paper work AGAIN, and waited to see the doctor (it was our "lucky" day because she had a cancelation). 

Aiden and I entered a cozy little room full of toys to play with.  Immediately the doctor told us that our insurance was NOT accepted, and we would have to wait the final year for the Waiver Program.  "It is very discouraging for parents and therapists" she said.  She offered to give Aiden a "creative diagnosis" so he could receive therapy once a week at the office.  You want me to label my son again?  I thought.  "With what diagnosis?" I asked.  "Stress, anxiety, behavior concerns..." she said.  No thank you.  And what are you going to do?  Sit on your couch and talk to him about his "problem"?  I thought.  He needs intensive therapy!  Instead, I voiced that children were falling through the cracks even though ALL THE RESEARCH says early therapy is key--especially before 5!  "30-35 hours a week proves effective" she said (nice job active listening lady.  I learned that in school too).  I expressed my concern that Aiden may never get therapy, because he will be in school full-time by the time we are off the waiting list.  That would mean 20-30 hours of additional therapy/week.  I don't think that is healthy for any of us.  We would never be able to leave the house.  Yet, programs will not accept you if you don't do at least 20 hours/week.  No more weekends away, no more walks at night, no more playdates.  We would have to be home for therapy.  That makes sense to me if Aiden was sitting in a corner all day rocking his time away, but not when his needs require just a little extra to help him overcome his "moments of strangeness". 

"What concerns do you have with Aiden?" she asked.  I started to describe Aiden's "moments," but I couldn't continue.  I just cried.  I was re-living the nightmare I already lived a year ago, and my heart couldn't take it anymore.  I thanked her for her time, and walked out of the room. 

I will keep Aiden on the waiting list, but my greatest hope is that he overcomes his challenges before that time.  Heavenly Father knows best, and maybe Aiden doesn't even need what these programs have to offer.  That leaves me waiting and praying for Aiden to continue to progress on his own.  It is strange changing his diaper.  He seems too old for that.  New toys facinate Aiden, and he obsesses over them.  If one is lost, it is a nightmare for us.  Children his age try to talk to him, but he doesn't respond.  He slaps his head and falls to the ground at random.  I can write them down now, but somehow I just couldn't tell the therapists these concerns.  I don't want them to be made light.  Everyone says "Aiden will be just fine".  I don't believe that means I should sit around and do nothing for him.  It hurts that I can't help him.  It hurts worse that the "theories" surrounding autism point the finger at me.  Aiden got a ton of antibiotics when he was a baby, and I gave him his shots, so it is all my fault.  It is mentally killing me to read about it.  Destroying my very spirit so much, that I get down on my knees and pray for guidance and peace.  I have decisions to make for Ashton now.  I question my every move medically and nutritionally with him.  I have little faith in my own eduction or in science/the medical field anymore.  Why do alternative therapies vary so much from traditional ones sometimes?  Some people have very strong opinions one way or another, but I'm just confused, upset, and frustrated.  I want this chapter to be over, but I may have to relive it with Ashton.  I keep praying to Heavenly Father to help me.  To bless Ashton to be healthy and strong.  There is promising research that some children with a family history of autism somehow "rewire" their brains to fight it.  Please.  Please.  Please "rewire" Ashton's brain Heavenly Father.  I don't think I'm strong enough to live this again.    

Sacrifice

I stopped by work today and it made me think a lot about sacrifice.

Abe and I have made many tough decisions the past 6 years.  The first one was joining the military (time away from family), then quitting my full-time position to become a full-time mother (losing the majority of our income), and deciding from the start to always pay our tithing (our income has been less than our debts for 1/2 our marriage).  Abe and I haven't bought clothing for ourselves aside from a small handfull of items from Goodwill.  We go on dates 1-2 times a year.  We forgo trips to save gas money.  We use government assistance programs despite a strong desire to be self-reliant.  All these things have taught me humility, patience, and a gratitude that could only come from such trials of faith.  I appreciate having a home and food on the table more than I ever have.  I see the Lord's hand in my life each time a friend gives us clothes or diapers for our children, and our meager income stretchs farther than worldly possible.  I can honestly say I'm grateful that we struggle.  Miracles have happened, and I have some great stories of faith, and enduring to the end to tell my children. 

A salesman came to our door the other day.  He was selling Bible and Book of Mormon CD's for children.  Although we simply couldn't afford them, it made me think--what am I doing to help my children learn faith now?  We say our prayers at meals and bedtime, but I'd love to teach them the scriptures.  I would love to learn them better myself!  I showed Aiden and Austin a picture, and both of them identified "Jesus".  Thank goodness.  With all that we do each day, sometimes I think I forget the most important things.  I want my children to learn what it is to have faith.  I have a testimony that God lives and that he loves His children.  I pray that my children know that too.