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.    

SO UPSET

I cried harder and longer than I have in a long time on Sunday.

A woman came into my life recently who claims her son no longer has autism.  She has her own website in which she promotes the body ecology diet, and warns of the "dangers" in our food supply.  I WILL NOT post a link to her site!  Some of the information was accurate--I've read it in my professional publications--but other information lacked science.  She claims that genetically modified food and our water supply is making us sick.   I've read on GMOs (genetically modified organisms) and their pros and cons.  I avoid them, but I DON'T think they are the cause of diabetes, cancer, etc.  I also don't think our water supply is contamined with drugs.  Seriously?  What CAN we eat and drink these days?  I'm beyond tired of all this bad food vs. good food information.  I could throw a toddler like tantrum I'm so sick of it.  In fact, I cried like a baby on Sunday as I read--yet again--the theories surrounding autism.  I thought I was past all this and moving on, but I find myself second guessing myself yet again. 

The THEORY (again): yeast infections in the mother are passed onto the baby.  The infection then crosses the babies blood-brain barrier, and weakens his/her immune system.  Therefore, when he/she is given the MMR shot they can't fight against the diseases they are designed to prevent.  Again, the Wakefield paper was sited (this paper was resinded by his peers). 

Why isn't Austin autistic then?  I had yeast infections with him as well, and he had the MMR shot.  Aiden DOES NOT have any of the GI issues sited on her website and never has.  He did have chronic ear infections and many antibiotic treatments though, which DOES affect gut bacteria and affect the immune system--that is a fact.  Yet, I know another child who had SEVERE ear infections and still did until he got tubes at age 3 (they were so bad his hearing was affected).  He had his shots, and he is NOT autistic.  What is going on?  Jenny McCarthy--ok not a good source of information--also believes this is why her son is autistic (she also claims he isn't anymore).  She states in her book that her belief is some children's immune systems can't handle the vaccinations, so they become autistic.  Coming from a lady who feeds her son corn chips because they are gluten free (corn is usually a genetically modified organism by the way).  She also believes in the yeast theory, and that diet changed her son's behavior.  Fact: sugar feeds yeast.  Fact: It is HARD to keep a 4 year old away from it when everyone else gives him juice, candy, cookies, etc. etc. every chance they can.  Avoid dairy?  Dairy is Aiden's only source of protein on a daily basis (he will occasionally eat nuts and seeds as well as beef jerky, but not always).  And gluten?  Aiden eats dog food (caught him under the kitchen table) and soap (when he thinks I'm looking away), and will take food from other people when they aren't looking (I've witnessed it)...good luck keeping him away from it!  I can't live my life like that.  I just can't.  I have 2 other children to look after, and the idea of changing Aiden's already limited diet makes me feel ill.  I have visions of going to jail for malnourishing my child.  The body ecology diet recommends all these foods that Aiden just will not eat (he still won't touch a fresh fruit or vegetable), but of course--I can PURCHASE products from their site to supplement his diet.  NICE.  Try to sell me another product or supplement that will "cure" my son of autism!  That is like saying a diet pill will make me skinny.  Right. 

So what is next?  I TRY hard to move on again.  I pray with all my heart that the answers come for AIDEN and that I do what is right for HIM.  Children have and do overcome autism without dietary interventions.  I pray that Aiden is one of them.  If not, I will love my child regardless, and not live my life trying to change him.  I still believe there are great lessons to be learned from special needs children.  I love Aiden's personality, and I don't want it to change.  

Enough?

Lately I've been thinking...am I doing enough?

It is 4 AM right now.  Ashton woke me up at 2, and I couldn't get back to sleep.  I'm grateful for this time to post my thoughts on parenting 3 young children. 

Our routine has changed a lot this summer, and it has been an adjustment for all of us.  I personally miss my 2 hours of "me time" when Aiden is in school, and Austin is sleeping (or playing alone in his room).  I realized how important it was for me to have that time now that I don't have it.  Every morning we would do an activity together--a playdate, a trip to the park, a walk, go to the library, or the play center at the mall.  Then it was lunch, school for Aiden, and rest time for Austin and I.  Later we would go to the park, watch a movie, and/or go for another walk.  I loved that.  It worked for all of us.  Now, our schedule is everywhere.  Aiden gets on a bus at 9:30 and is home by noon for lunch.  Austin, Ashton and I try to catch a playdate within those hours.  Aiden hasn't napped for over 2 years now, and Austin isn't taking them like he should (he falls asleep on his own pretty early sometimes).  That means I have to find something entertaining for us to do after lunch now.  Honestly, I'm exhausted by then (too many baby wake up calls), and all I want to do is sleep!  The kids watch more and more TV these days, and it bothers me A LOT.  Although we don't receive any channels, we do have a ton of movies, and the boys love to watch them.  What they watch is ok (with the exception of Shrek's iffy wording), but I know how important it is to get Aiden to interact.  I just don't have the energy for it in the early afternoon. 

Unfortunately, this schedule will not change much in the fall.  In fact, it will be harder next school year, because Aiden will be in school from 8:30-11:00, which means we have limited time to do anything in the morning, and the afternoons will still be free.  On a very positive note, it looks like Aiden will receive therapy a year EARLY.  I will know more on July 11th.  I'm praying that will give him what he needs when I just can't.  I keep thinking, I have to be doing alright, or the Lord wouldn't have prompted me to have Ashton.  I do believe that, but some days I feel guilty because I can't give Aiden as much attention as I used to, or I lose my patience because I'm so tired.  It breaks my heart a little, and I feel inadequate.  I'm trying, and I'm sure it will get easier as Ashton grows, and I get more sleep (he is only 6 weeks old).

Sadly, Austin seems to be picking up on Aiden's "unusual" behaviors.  At a recent playdate, Austin hit his head and fell to the ground (Aiden does this a lot).  I also noticed that he is starting to line things up just like his brother.  I get it, but it isn't easy to watch.  On a positive, Aiden is very strong from all his climbing, jumping and running.  Austin has picked up on that too, and they climb even the highest of places together (with the exception of the first tree Aiden ever climbed).  Austin seems too small to be climbing so well, but he does it, and I'm glad they are both active and strong! 

Aiden continues to be a loving, sweet brother.  He continues to ask if he can "hold the baby".  He gives Ashton his blanket and pacifier, and pats him on the head.  Aiden and I had a rare moment alone together last night, and as I tucked him in he said, "thank you momma".  Man I love that special little boy!  I sincerely hope he overcomes all this, but if not, I will love him for the man God intended him to be.   



EC

Aiden has 1 more year of Early Childhood before he starts Kindergarden!  Tomorrow marks the end of another "semester".

I continue to be tremendously grateful for the Early Childhood Program!  I don't think Aiden would have made the progress he has without it.  Thank goodness for good teachers who are patient and loving to our special needs children!  I want to highlight here some of the changes I've seen in Aiden since he started the program.  I hope he maintains them over the summer!

Potty Training--Aiden used to be afraid to even sit on the potty.  Now, he sits on the potty and flushes it when he gets off.  He still hasn't actually gone on the potty, but we aren't sure if he even understands what we want him to do.  It is a good start, and I'm grateful to see progress.  I have been trying to be consistent with getting him on the potty for every diaper change, regardless if he does anything or not.  I really hope it will "click" for him before the end of the year.  Meanwhile, we still receive diaper assistance for Aiden because he is on disability.  (Thank goodness, because we now have 3 in diapers.)

Interaction with peers--I continue to be grateful for Austin and his relationship with Aiden.  He helps Aiden so much!  Austin teaches Aiden how to play :)  We did a playdate at our house today, and I'm happy to report Aiden played with the other children!  In the past, Aiden would hide in my bedroom during playdates, or stay inside when we went out in the backyard.  He played the whole time today, and it has been that way the past few months as well.  Recently, he GREETS his classmates by the correct NAME when he arrives at school.  He says, "hi" and "bye" at appropriate times at home as well.  That is an incredible accomplishment!  His teacher has been working on greetings for a long time!  He finally "caught on" during spring semester. 

Communication--It brings me great joy to say that Aiden is talking!  His words are growing by the minute!  He asks for more food, movies, etc. appropriately now (although the sentence might not be complete).  He has more eye contact, and he answers some questions such as, what color is that Aiden?  He still doesn't understand complex questions like, "how was your day Aiden?" or "what did you do today?"  I don't care.  Aiden is TALKING, and I know more words will come with time. 

The best part?  When I say, "I love you Aiden."  Aiden replies--not repeats, "I love you TOO." 

Next year will bring more change for all of us.  Aiden will do morning EC instead of afternoon.  I'm sad about that.  Every morning the boys and I go to a playdate, the mall play center, the library, or for a walk to a nearby park.  I will miss that, and I think Aiden needs that.  Afternoons are "rest time" for Austin and Ashton, which I need and look forward to while Aiden is in school.  Mommies need to "recharge" too!  I'm hoping we find a healthy new schedule for all of us.  We will see what happens next week when Aiden starts early morning summer school!

                                              Playdate (Aiden is on the far right bottom)!