I'm Moving My Blog

It's still a work in progress, but I'm moving my blog to:

http://www.adventuresofanautmom.blogspot.com/

I would like to welcome you to check it out :)

Josiah's Diagnosis

I don't know how many people know this yet, but Josiah was diagnosed with autism on Wednesday. I've already had some people say some really stupid stuff to me, so I'm not telling anyone else face to face.  I guess it is a little overwhelming for some people to imagine us with two autistic children.  But, it's a little insulting when people are horrified by my family.  My children are beautiful--in every way, and they bring me so much joy.  I understand that this is going to be hard.  I hate knowing that they will have challenges and struggles.  But, I'm going to do everything I can to help them!

I didn't cry or flinch during the evaluation, but that is mostly because I already knew.  And, when it is all said and done, I'm not really scared of autism.  I know that kids can get better, and I'm going to do eveything in my power to ensure they are overcomers and that they are happy. For my husband and I, the diagnosis of Josiah was not shocking, horrifying, or insulting in any way.  We know that Josiah is beautiful, smart, and not terribly different that any other 16-month-old. 

I LOVE MY BABY BOY!!!

The Most Encouraging Recovery Video I've Seen Yet

I've been watching recovery videos on youtube.  Some of them look like they are stretching it a little bit, but some of them are amazing.  I was really encouraged by this particular video!!!   The dark circles under the boys eyes are a common trait that I've seen in many autistic children.  We really see it badly in Josiah (one reason we went ahead and started him on yeast treatment as well).

Family with 6 Autistic Children

I think this family is pretty amazing--not to mention their children are so cute. They encourage me to keep going forward. I feel horrible that the mom had a breakdown at one point from all the stress. My heart goes out to her. I will keep them in my prayers :)

ABA and Biomed update

Just wanted to post a quick update on how Isaac's treatment was going.  He is doing awesome with ABA.  He quickly picks up patterns and is VERY cooperative with them.  They are about to update his program for the second time after only a couple of months.  He is always very chatty after therapy and more in tune with what I'm saying.  I've noticed that his speech comprehension has picked up, and is especially in tune after a therapy session.  Makes me want to do more therapy!!! 

We are doing yeast treatment to heal up Isaac's bowels.  He is on his 4th day of diflucan, so we are still waiting to see what happens.  The doctor said this can make him very sick because as the yeast dies off the toxins are reabsorbed into his body.  I haven't noticed anything drastic happen yet.  Since I'm looking for something, I have noticed that his sensory issues may be a little more extreme.  I think he has seemed a little more sensitive to noise lately.  And, he seems just a little tired maybe too.  But, otherwise he seems to be doing well.  But, I'm wondering if it will take a while before the die-off sickness starts.  I pray not.  I've hesitated on giving him the medication because I've been afraid I couldn't handle it with all the stress going on right now.  David was switched to a new route which was ANOTHER pay cut for us, and he has been really negative lately.  We are on the mad rush to look for a job.  I've been applying online which has kept me up at night, and I've run into some interesting positions.  We are looking for David as well.  So, anyone reading this, please pray for us!!!

And, we would like to be able to find a church that is uplifting and be able to attend a service.  Please pray for that as well :)

Decisions

My husband and I have a lot of decisions to make.  It doesn't help that my husband is not a planner.  He "flies by the seat of his pants" as many say.  But, unfortunately, everything we do takes some planning and my husband relies on me for that.  And, I don't have the confidence to make big decisions.  So, we often get caught in an odd position.  But, we are learning. 

We have a lot of financial decisions to make, especially when it comes to ABA.  There is no doubt that the program is excellent.  There is no doubt that Isaac is responding well to it, and there is no doubt that he needs it.  So, the question is, how are we going to pay for it and how are we going to maintain it? 

My husband took a pay cut to come here, and he has recently been transferred to a new route which will be another small pay cut (we were hoping for the opposite.)  We have money from the sale of our house, but with the cost of therapy, special products, and medical treatments, we will run out too quickly.  I quess I've had some fantasy that family members or church family would see our situaiton and come to our aid.  But, no doubt, WE ARE ON OUR OWN. 

We do have options, and the only way I can see that we are going to SURVIVE this is to better our financial situation.  After all, this problem is not going to go away.  I so wish it would, and I believe in miracles.  But, there are a lot of people out there that love God and are going through the same thing.

The question is, how do we provide what our child needs?  Someone has to be available during day time hours to run back and forth to therapies and doctor's visits.  I think only another aut-mom can understand the demands of this.  If I find a full-time job, David would have to quit and take on a part-time job.  He could finish some schooling.  This seems like the easiest option, but NOTHING has opened up.  And, I do have concerns that David won't be able to manage what I'm doing.  He is not as good at reading Isaac's moods and keeping an eye on him.  Isaac bolts really quickly, and he can be lost in traffic in a matter of seconds.  I've been around Isaac so long and observed him so much that I believe that I often know what he is thinking.  Also, David seems to panic in many situations (for instance, if one of the kids throws up in the car), and gets everyone really stressed out.  I have to tell him to take a deep breath sometimes, and tell him that it is going to be okay. I'm a much more even-kill temperament.

I've also considered going to graduate school and taking out all the loans available.  But, I'm just not sure I could swing it.  I'm afraid that I won't be able to give my family the quality they deserve, and in the end, this might be counter-productive.  I already feel like a shell of a woman with the bags under my eyes and spaced-out mind from lack of sleep and exhaustion.  No doubt, I don't take care of myself as I need to. I only survive by a daily pot of coffee, and my diet is whatever I can cram in my mouth on the fly (usually left over toddler food).  My husband and I don't get dates, free time, cuddle time--we can't have hobbies--we can't have friends like we want to.  BUT, we enjoy our children together.  We learn to love watching Micky Mouse Clubhouse for the 500th time.  We marvel at the ability to quote every line from the show.  And, all in all, I believe we love each other more and even feel proud of the fact that we've managed to survive as a lower middle-class family dealing with AUTISM. 

I love my family, and I want the best for them.  I just need God's help on these decisions...

Mini-Version of the Documentary, Autism Every Day

All In a Good Night's Sleep!

Isaac once hated these stairs.  Now, we can't keep him off them!

I almost posted a couple of weeks ago (a pretty depressing post), but I felt like I just needed to give it some more time.  I thought I was going to go crazy.  Apparently, the stress of the move hit Isaac suddenly and in a horrible way.  I've never seen the type of behaviors he was having.  Most puzzling was his manic behavior. He was so hyped out that if I made a funny face, he would laugh loudly and hysterically until he was hyperventilating.  Tears would stream down his cheeks from laughter, and then if he heard a loud noise he would freak out and start hitting his hands together.  It was so unnerving and hard for me,as a mom, to watch.  He really seemed lost to me.  It felt like we were living with a completely different person. I had a couple of breakdowns myself at night after everyone was in bed.  It's hard on the nerves to have a child that is hysteria constantly.  And,  I still have fear that he will have another regressive period and lose skills, and I always fear that my Isaac won't come back.  Oddly enough, if I sat down with Isaac he would make great eye contact and show me all the parts of the body on a doll (but if I said eyebrow, he would go into laughing hysteria).  It was all sooooo strange.


We were having horrible nights of sleep--up 5 or 6 times with Isaac, and then Isaac would sleep long and hard during his afternoon nap.  I'm not sure if I mentioned this in an earlier post or not, but Isaac was having a lot of issues with the vaulted ceilings in his room which caused him not to be able to relax in his room for sleeping.


I started to realize that we had a great time in the mornings, and then in the afternoon he would be having all sorts of sensory problems and acting crazy.  Judging from his past experiences and this odd switch in behavior, I came to the conclusion that Isaac's disrupted sleep pattern was contributing to the problem, making it hard for him to adjust to all the new sensory information.  I guess it's kind of like riding a fast roller coaster after not sleeping for three days (the thought makes me kind of nauseated).


A few friends have recommended that we use an natural product called melatonin to help with Isaac's sleep problems.  I ran it by my mom (a nurse) and she seemed to think it would be safe to give to him.  So, we decided to buy some melatonin from a pharmacy and give it to him as a sleep aid at night.  I felt a little uneasy about giving it to him at first because I was worried about what other people would think.  But, it has been a miracle for us.  Isaac is back to waking up once a night (his normal pattern).  And, after a couple of nights of good sleep, he has calmed down so much.  My Isaac is back, and I welcome him with open arms.  He has been so affectionate to me lately, and I've been eating it up so much.  He is back to my happy child, giggling and trying to be cute to get his way!!! I love him so much, and I'm thankful for my beautiful son!


Now, I just need to get caught up on sleep a little myself!  LOL!

Fundraising for Isaac--We appreciate Your Support

Another fundraising idea from Easy Fundraising Ideas

Dr. Sears Response to New GFCF Study

Allergen free Diet Can, and Does, Help Many Children with Autism


I've seen over 500 children with autism in my pediatric practice over the past 10 years, and in my experience the majority have benefited from the diet. Children with chronic GI symptoms, such as loose stools or constipation, seem to benefit the most, which would make sense. But I've seen some children without any GI symptoms improve on the diet.

So when I see a study come out that conflicts with my extensive clinical experience, I take a very close look at the study before I decide whether or not it should influence my medical decision-making. This new study, published by Dr Susan Hyman on May 19, 2010 from the University of Rochester definitely does not change my opinion of the possible effectiveness of the diet for children with autism. First, this was a tiny study of 14 children. The medical community rarely considers such a small study clinically useful. A much larger study would have more weight. Second, the study didn't allow for enough time to pass for the diet to create enough improvement to be clinically significant. In my experience, parents often see results from casein elimination within a few weeks. But gluten often takes longer, up to several months before benefits can be seen. Third, gluten and casein aren't the only allergens that children have to eliminate. In my practice, I eliminate all allergic foods at the same time to allow for maximum healing. A very common allergen on the diet is soy. It is possible that some children in this study had other foods that needed to be eliminated and weren't. Finally, two children in the study were excluded because they tested extremely allergic to gluten (positive TTG test). Such kids would be virtually guaranteed to benefit from the diet. It is likely the researchers wanted to determine if the diet would help the general population of kids with autism and not just those with severe gluten allergy. But including those two children in the study could have resulted in an outcome more in favor of the diet.

The mainstream medical community looks for treatments with a very high success rate. For example, if an antibiotic only improves half of kids with an ear infection, such an antibiotic wouldn't be approved. A drug or treatment needs to work very well in most patients in order for it to be adopted. Autism is unique, however, in that many treatments work extremely well, but not always in a high percentage of children. Does that mean we shouldn't offer such treatments? Not at all. If I have a particular treatment that would help even 20% of children with autism, I would offer it to all children. Those that do benefit can be blessed by improvement they wouldn't otherwise have. When it comes to the diet, my success rates are much higher than 20%. I would say that at least 75% of parents report positive results, and many of those report amazing results.

I'm not going to let a very small study such as this one prevent me from offering the hope of healing to parents, and I hope that parents everywhere consider trying the GFCF diet for their child.

Additional studies that are positive for Autism and dietary invention can be found at

http://gfcf-diet.talkaboutcuringautism.org/dietary-research-in-asd.htm



Sincerely

Dr Bob Sears - Sears Pediatrics

And TACA Physician Advisory Board

A Whole New World

We've just made a huge move as a family.  We have moved from our rural Tennessee home to a townhouse just outside Nashville, and I'm very happy with the move.  I've been praying for CHANGE for many months.  I've sat up at nights crying and pleading with God for help, and honestly, I had begun to believe that He had completely forgotten me.  But, as soon as we decided that this was the area we needed to be in, our house sold and we are here.  It has all been really sudden.  I LIKE THAT KIND OF CHANGE!

Although I love change (I want to take a different route everytime we go somewhere), my husband and especially Isaac has a hard time with it.  In many ways he has done better than expected.  Isaac seems to love being outside our townhouse.  He LOOOOOVES the pool and the playground down the street.  And, he seems to like the place okay, but we are still having some major problems with getting him to sleep. He gets really hyped out about our upstairs bedrooms with the vaulted ceilings and the fans that hang way down.  Actually, the first time we tried to go up the stairs, he shrieked in horror.  And, when David tried to force him up the stairs, Isaac bit a huge chunk into David's arm.  It was horrible. 

So, we moved the mattress to the living room floor and that is where David and Isaac slept for the first two nights.  I slept on an infant mattress with my feet hanging off in the floor beside Josiah.  Isaac eventually, decided to go up the stairs out of curiosity.  He clung to his favorite pillow and told himself, "It's okay" over and over.  But, as he got up there, he realized all his toys were there, and he soon forgot his fears.  HOWEVER, he is still uncomfortable sleeping up there, and for now we are suffering more sleepless nights, struggling to get him to sleep.  And, he is ESPECIALLY grouchy from sleep deprivation.

Josiah loves our new place.  So far, he thinks it is the coolest place he has ever seen, and I've never seen him happier!!! Thank God for that.  Maybe more of my personality in him!?!?!

So, tonight we met with the organization that we decided to use for ABA.  They were very nice, and I like that they spend a good amount of time training us as a family.  We are using Hope Consultants who was referred to me by someone locally.
http://www.hopetn.com/

I was happy when I saw that Isaac's main therapist was a beautiful lady with long, blond hair.  Of course, Isaac thought she was awesome, and he tried to get his flirt on a little despite his crankiness!  He is a sucker for blonds!!!

So, we start Friday.  That quick!  I can't believe it!  It's been a whirlwind.  I nearly cried on the way home from the meeting from sheer joy and from being overwhelmed that it has all happened so fast.  We are starting Isaac with the minimal 8 hours a week of in home therapy, but we are also enrolling him in a summer class where he will be working with an ABA consultant at their center in a group with three other children.  He does well in small groups.  So, by the first week of June he will be getting 14 hours of ABA a week and I am hoping that we, as parents, can supplement that with more.  Our goal was 20 hours per week, so we are pretty darn close!  Now we need the finances.  I have resumes out for part-time, second shift, or third shift jobs.  I'm hoping to hear something soon.  I jump everytime the phone rings, thinking it might be a potential employer.  We have the finances to start the therapy, but it won't sustain it for long.  God has been faithful with this move, and I now have to trust that he will come through again!

So excited to see his progress!

SENTENCES!!!

So, Isaac has started (just started) talking in sentences.  He has become very verbal, repeating everything we say. 

Allergies

Isaac has just come out of an episode of severe allergy problems which started on Easter.  His eyes were swelling nearly completely shut. 

Easter Seals

Easter Seals

More Biomed Stuff

We got the results back from Isaac's stool lab tests.  Basically, his gut is really out of wack!!!
He has a build up of harmful bacteria in his bowels.  And, if I am reading the results correctly, he has microscopic yeast build up as well.  He does not seem to be digesting carbohydrates properly. 

I got a little lost on the technical stuff, and just took the rest of the test results to mean that he is having gut problems and irritable bowel.  It reports:

Lysozyme is very high (1070—normal should be less than 600)
Lactoferrin is very high (12.8—should be less than 7.3)
Secretory IgA is higher than normal (258)
Ph is off and Valerate is low (whatever that is)

So, now I am going to have to get the doc to translate all this.  One day I will know what it all means when someone rattles it off!  The results confirm our suspicions of bowel problems.  He has had ammonia smelling poo in the past, and he frequently pushes objects into his stomach.  I wonder if he has been in pain this whole time without us even knowing it. 

As far as progress, I am still seeing improvements in Isaac daily.  He is understanding more of what I've been saying to him.  No doubt.  He seems so much more like a person I can talk to.  I think he is doing more imaginative play too.  He gets his toy phone, and instead of saying the same old thing, he variates the conversation.  I hear him say stuff about houses (probably because we have been selling and buying a house, therefore we are talking about houses a lot on the phone).  It's mostly immitation of us, but he mixes it up into his own thing.

Also, I watched Isaac tell his stuffed fish to say “Good morning” into his little toy microphone (the teacher at his daycare tells all the kids to say "good morning" into one of those echo microphones). Then he put the microphone over the fish’s mouth and said, “GOODMORNING!!!!”

It was sooo cute!!!

I'm including a photo of the boys on Easter weekend.  We enjoyed the great weather in our beautiful yard. This is the last Easter we will spend at this house.  It is the house we brought Isaac and Josiah home to as little, tiny newborns. I will miss it, but I'm also glad to be moving on!  Next post, I will update on our move!
 

What is AUTISM?

I'm curious to know what other people think here.  I've been around a lot of people this weekend, and it seems that people are not sure they believe me when I tell them Isaac is autistic.  They think I am overreacting.  Some people see what I am talking about immediately, but assume that Isaac is going to be severely mentally handicap.  It's odd to get such extremes all within one day. 

I also talked with a cousin whose little boy was diagnosed, but she has rejected the diagnosis.  I'm not sure if she should reject the diagnosis or not.  It is apparent that her son is severely language delayed and has had problems in the past with group gatherings.  But, from my observation, it is alsoapparent that he does not have severe autism.  But, I can't help from thinking he is on the spectrum.  It's something about the way he holds his hands with his fingers crunched up (just like Isaac does).  I've seen a lot of autistic children do that.  I think it has to do with joint compressions in the fingers. It was apparent in our breif conversation that she didn't know anything about autism. She has an idea of a severely handicapped child in mind.

My conclusion is that people, in general, don't know what autism really is. And, in general, they carry an assumption with them that is mostly untrue.  So, when I tell someone that my child is autistic, they interpret that in various ways-many times in ways that are untrue.

So, how do you make people understand what autism is? 

I, myself, had trouble with the concept.  I can recall three autistic people from my past, and all three were severe cases.

I knew that tip toe walking was a symptom, and when Isaac started tip toe walking, I read list after list of symptoms on the internet.  I never saw Isaac in these lists.  The only symptoms that stuck out was resistant to change which made me a little nervous and kept it in the back of my mind.

I think what makes autism hard for people to understand is that autism is a grouping of various abnormal symptoms.  That is why it is called a spectrum disorder.  Therefore children can vary to a great degree in symptoms and severity.  Thus, the saying goes,

"If you've met one person with autism, you've met ONE PERSON with autism."

So, for anyone's information, I am listing my son's symptoms, and afterwards I will include non symptoms (symptoms that many other autistic children have that Isaac does not).  The non symptoms is what threw me off in thinking he was autistic, because I had my own ideas of what an autistic child was.

I pictured a little boy that wouldn't play around other children, wouldn't smile, wouldn't look into my eyes, and didn't like to be touched.  But, every parent of an autistic child can include a group of non symptoms because I don't  think many children, if any, display all the characteristics.  They are diagnosed autistic when they have a grouping of symptoms, and not every child has the same symptoms.  Click on the title to read the full blog with a list of Isaac's symptoms!

GFCF/BIOMED -- What I've Noticed

This is what I've seen so far.  I've not noticed a drastic improvement on the diet, but we have noticed a slight improvement lately in speech which may be a result of the diet.  I have no doubts that going casein free sparked some type of negative behavior.  From my opinion, Isaac DID go through some type of withdrawal at least from removing casein (dairy) from his diet.  His negative behavior diminished after 3 or 4 weeks, but for some reason his sensory issues are still a little elevated. 

After the withdrawals ended, Isaac has become more talkative and requests what he wants more.  And, we have noticed that some of his words have been clearer.  But, I don't know if this is because of diet or other factors.  And, the change has not been drastic enough for me to know 100% sure that it is the diet.  But, it is possible because as soon as he came out of the "withdrawal" phase he became more talkative.  After he started to calm down, the next therapy session we went to, both therapists noted that he was talking a lot.  One said he was "unusually talkative."

To sum up what I'm saying:  Isaac has made improvements in speech by requesting more of what he wants.  His words have become a little clearer, and he has been using longer phrases (still mostly memorized phrases).  It seems that his language improved after he went through a phase of withdrawals.  However, I can't say in my heart beyond a shadow of a doubt that it was the diet that helped him.  I know that at some point he will grow and develop.  I'm not 100% sure that this is not just natural growth.  Isaac's sensory issues are worse than they were before the diet.  So, I'm just not sure I understand why this has happened.

We also started Isaac on VitaSpectra (a high dosage of B vitamins mixed with other vitamins and minerals).  We had given him Super Nu-Thera (a similar mix of B vitamins)  first, but noticed that it set his sensory issues off really bad.  We tried this supplement three times, and everytime he was bouncing off the walls, slinging his hands, and running into the walls...BUT he was sleeping  MUCH MUCH MUCH better. 

Now, with VitaSpectra (similar to Super Nu-Thera, but without copper), we have noticed no change in sensory issues, but he is sleeping better.  He has actually been sleeping through the night on some occasions (which is a miracle to us).  I have no doubts that this supplement is helping him sleep.

We are about to start the next supplement, but I'm not sure which to start next. I'll keep updating.

My Lovie

I've been planning on cutting my hair off next week. I've grown tired of it pulled back in an often greasy pony-tail.  It always seems to be a mess and in my way.  I've been checking out hairstyles, and I told my husband last night that it was about to go!

Today, Isaac and I had a perfect day.  We stuck to your schedule board, and we had so much fun playing together while Josiah took an extra long nap.  I savored every minute of it because Isaac prefers his father to me, and my time with him is eaten up with running him here and there to therapies.  But, today...not so.  We had a lot of fun together, involving ourselves in fun sensory activities. He enjoyed every minute, and he felt like my little boy again.

After lunch, we had our relaxation time together before his nap, listening to Jason Upton while lying in the floor together.  I rolled to my stomach as Isaac walked on my back over and over again (a wonderful massage, I might add).  We cuddled and tickled each other.  Then, I put him down for a nap.  As I read him a book, Isaac reached up and started stroking my hair and fingering the ends over and over.  It brought a flood of memories back to me.

A year ago, my hair had been his lovie.  He had played with it from the time he was a baby, fingering and stroking it while he drank his milk. When he got older and got upset, he would reach for me and immediately grab my hair to fingure through it and ease his tension. I had always said that I would never cut my hair because it had become his lovie--and I loved being his lovie. 

At some point in time, he lost his facination with my hair.  I'm not sure if it had to do with getting older or the regression.  But, it is something that I haven't thought about, and I wasn't aware that it was missing. 

So, the hair stays.

Even if it is only an occasional lovie, I will tolerate the unkept appearance and lack of modern style just to treasure those moments :)

The Day I Met Hitler

Okay, so I know you are wondering what the heck I mean by that title! Read and you will find out! Actually, this entry is inspired by our DAN! doctor appointment. I can't help but contrasting the appointment with the day I met "Hitler."

Big Hearted People

Friends have been a challenge for my husband and I.  It's seemingly impossible to make new friends with such busy schedules and the restrictions that autism places on our family.  Our world is consumed with picture-schedule boards, strict diets, rigid routines, and numerous therapy sessions.  This simply makes it hard to relate to others.  In a sense, we've become foreign to most of our friends.  Thankfully, there are a few special people out there that can relate to foreigners.

Quick Diet Update

 So, today we decided to launch 100% gluten free casein free AGAIN. 

Thinking

I've been reading a book called A Real Boy by Christina Adams.  It is about her son's recovery from autism.  Here again, I find yet another person that had a similar situation to us with discovering that their child was autistic.  So many problems.  SOOOO many.  Enough to send you on a search for what the HELL is wrong, reading every book known to man. 

Save the Drama for Your Mamma (written after Isaac's 1st birthday)

Oh wait...I am the mamma. DARN!

Isaac is now a toddler (he just turned one year old), and I think that he would take the crown for the drama KING.

WHAT A WEEK

I think David and I barely survived this week.  I had to leave the house two nights because I couldn't take the stress. 

Beginning the GFCF Diet

We are almost there!  We have been eliminating foods and adding in new ones.  Sad to say, but my son's diet has had a lot of french fries in it lately.  But, he is doing better than I thought. 

Isaac's Birth

This may seem like an odd place to start since it happened over 2 years ago. However, I feel the information of Isaac's birth is necessary to understand his story.


In a nutshell, Isaac's birth did not go as planned.