Spring Decor and My To Do List

I am completely in awe of you bloggers that can find the time to post every few days, especially you homeschoolers.  Where do you find the time?  Do you only require 6 hours of sleep a night?  Do you have a housekeeper or cook?  I just can't do it all.  I have been homeschooling my middle son in the mornings for the last month and it has taken over all my free time.  As I plan for next year and the possibility of homeschooling all three, I wonder when I will ever get a chance to post with frequency or ever do a DIY project again.  If you have any secrets please share. 

So, with public school getting out in less then a month, I am suddenly panicked by all the projects and organizing, I had envisioned finishing this school year and is still not complete.  So, I am going to make a list of all that I want to accomplish in the next month, with the hopes that posting it in cyberspace, will make me more accountable.  I will also show you some pics of my decorated living room for Spring, it is finally here!! 

      To Do List

• finish organizing pics on computer
• get software for computer safety for kids (any recommendations would be appreciated)
• organize all closets and switch clothing for summer
• organize all hot spots (places where piles have accumulated)
• sell all that stuff on ebay/craig's list
• find that lost library book
• purchase Scout stuff-I am going to be donning a stylish Scout leader shirt...you are jealous I know ;)
• organize all my jewelry and make/purchase something to hang necklaces from
• update account password sheet
• catching up on ironing
• plan summer vacation
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  I'm sure I have forgotten something, but this is a good start.  What's on your to do list before school gets out?
  
  
  
  
  

My Family's Journey With Autism -Part 6

 Part 1  Part 2   Part 3  Part 4   Part 5



My son was now 5 1/2.  We decided to buy ourselves another year, by enrolling him in 1/2 day  kindergarten at a private school and in the afternoon being part of the public schools pre-k program.  This was the best of both worlds in my opinion and turned out to be a great choice for him too.

Since we moved, we lost the wonderful facility where he was getting speech and occupational therapy.  But he was doing so well in both areas, we decided to take a break and see how he did without it.  We created a sensory room in our home, with a rock climbing wall, swing and many manipulatives they used at therapy, so I was confident we could do sensory therapy at home if needed.

His first day of school, I was a basket case.  I cried my eyes out.  I remember sitting in the car, thinking how far he has come.  I was so proud of him.   He made friends and he had a fun personality that even the older kids in the school knew who he was.  School work came easy for him, except for handwriting.  It was totally illegible .  One time when questioned, by the teacher, about what his paper said, he looked at her and said, "Can't you read Spanish?"  He has a funny, quirky personality that others really liked and won most of his teachers over with his silly remarks and loving ways.  

Even though, he was doing well, his attention span still suffered and he processed information slower then others.  So, he might get his pencil and paper out 5 mins after the teacher said to and was always falling behind in schoolwork  He also, didn't see the point of doing work that he already knew the answer to in his head.

Right after he turned 6, which is in the middle of the school year, if was time for another yearly evaluation.  This time the doctor said:

he does not technically meet criteria for Autism  or Asperger's (you can't technically be diagnosed with Asperger's with a history of language delay), so I would diagnosis him with PDD-NOS, though only very mildly affected.  I feel his difficulties, come from Attention Deficient Disorder. 

One of her suggestions, was medication. Now, I know many people achieve great results with medication, but I am not willing to jump on that bandwagon, just yet.  I believe their is a strong correlation, between what we put into our body and our behavior.  Since we had moved I had yet to find a holistic doctor in the area and when I researched, I was blessed to find a DAN, Defeat Autism Now, doctor down the street from my son's school.  We made an appointment and were relieved to hear this doctor did not want to run anymore tests.  His advice was, we left out some critical steps when treating him the first time the tests were run and that was completely healing the gut and chelation, the removal of heavy metals and toxins, through chelating agents.

Now, chelating, is a very controversial step in "healing"autism and I was scared to try it.  I had a close friend's son have a bad reaction to the same chelating agent that my son was going to use.  I do not advise doing this on your own, but only under an experienced doctors watch.  My son, however, had no ill side effects.

So the first step was to completely heal the gut.  My son was given many healing herbal supplements to take, as well as his continued use of probiotics, fish oils and supplements to support his neurotransmitters.  Though we had avoided artificial flavors, colors and additives, I still bought a majority of our food processed.  We  starting eating as much "real" food as possible, minimally processed  and as much organic as possible.  We saw amazing changes during this time period.

He had even more impressive gains in social and communication skills.  He desired to play sports and stayed focused during the game.  He went from wanting to watch TV or play video games all the time to knocking on the neighbors doors to organize a soccer game. He had more energy and focus at home and school.  His handwriting improved dramatically and he started to enjoy activities like coloring and drawing.   It was like a different kid at home and at school.  His teacher even asked if we put him on medication.

Now, we were at the next school year, the one we are presently in now.  We decided to put him in all day kindergarten at public school, even though academically he was ready for first grade.  We thought, he fit in better socially with the younger kids.    He enjoys school, his teachers are great and he has fairly good behavior.  He stills struggles with doing work, if he already knows the answers.    He is less impulsive and can focus on his school work with minimal redirection. 

We had seen such great improvements and now it was time for chelation therapy.  I was nervous for this,  but, we decided to continue anyway, after I  found out the doctor used this supplement on his own kids.  We started chelating in December of 2012 and took the supplement for 3 weeks.  I can honestly say, we had no ill side effects, but we also didn't see any major changes either. He was still the kid I described in the paragraphs above.  So, we actually just finished his second and final round of chelation.  He is currently only on fish oil, probiotics and a multivitamin.  I do give him digestive enzymes if we eat fast foods, or processed foods.  We continue to eat 80%  "real" foods.  Which means I prepare or make 80% of what we eat.  He does get birthday treats at school and eats the school lunch a couple times a week, but at home, things are pretty healthy and mostly homemade. He does not receive any speech or occupational therapy outside of what he gets a school, which is minimal. He is still little and remains in the 1% for height.

He turned 7 in January and it was time for his yearly evaluation, this time I found a group, through a friend, called the National Association of Childhood Development, they evaluate children and based on their strengths and weaknesses develop a program that is led by the parents to help them achieve there greatest potential.  Their educational director,  said my son was

"highly intelligent with auditory processing difficulties"

They sent us home with activities and a program we can do to help him make gains with his auditory processing.  She also said, he was probably very bored in school, because he was several grade levels ahead in math and reading and public school was not the best schooling option for him, homeschooling was.  So, for the last month and for the remainder of the year, I have been homeschooling him in the morning and he only attends half days at public school.  I am praying about what we are going to do next year, but I am leaning towards homeschooling, which is something I have always desired to do, but I'll save that story for another blog post. 

So, this is the end of our journey, thus far.  We still face struggles, but all parents do.    I feel hopeful in his progress and one day think, just like my other children, he will do great things. 

If you have a child on the spectrum I urge you to look at diet and removing as many toxins from their environment too.   It was very beneficial to us, as well as, sensory integration and speech therapy.  If you disagree with a doctor, get a second opinion but most of all, know that it is possible for their diagnosis to change as they get older.  Never give up hope or searching for answers!

 Thanks for reading our journey and for all your sweet comments you have blessed me with.  I honestly have felt God's presence with me this whole journey and the glory goes to Him, not me.   Below is one of my favorite songs that comforts me, with each hiccup we face in this journey called life.  I hope you enjoy it!   

My Family's Journey With Autism - Part 5

Part 1    Part 2    Part 3   Part 4


So at this point, my son had just turned 5, he had the diagnosis of Pervasive Developmental Disorder, leaning towards Asperger's for about a year.  At this point, we were doing heavy speech and occupational therapy, with a focus on sensory integration.  Not only was he getting these services at school, which he was now getting through the school system, we were also using our insurance and getting therapy outside of school.  At this point, we also hired a therapist that played games and worked with him one on one with handwriting.  We found that putting him in a smaller setting and teaching him he thrived. I also hired a student who was studying occupational therapy and had her spend an a couple hours  a week doing sensory activities from the book The Out Of Sync Child Has Fun with him. 

This is also when we started many of the holistic type treatments.  He had a variety of tests run and was put on several types of vitamin and herbal supplements to help aid in digestion and regulate his neurotransmitters. 

Within a few months we saw his conversation skills really start to blossom.  Instead of only conversation prompted by me or when he wanted or needed something, he started having spontaneous conversations with us.  Instead of eating in silence at the dinner table he started joining in the conversation too.    For the first time, he was able to do worksheet type work unattended and stay focused on it.  He started to pretend play, for the first time and desire friends to come over.  He also stayed engaged when we did family activities like board games.  This was really exciting for us.

At this point, many of the therapists we were working with were often surprised by his current diagnosis.  He had a funny and silly personality and was very social and clearly enjoyed being around others.   He was easy to work with and eager to please.  I am not saying kids with Asperger's don't have these personality traits, but the other kids with this diagnosis  that I have been around, are much more set in their ways and ideas, and almost robotic or monotone in their speech and language skills.  His speech therapist we were working with, suggested a diagnosis of Semantic Pragmatic Language Disorder may be a more accurate fit for him and I agreed, however with this diagnosis, our insurance would not pay for therapy anymore.  

Now, this was around the same time we had to decide what we were going to do about school the next year.  He was to start kindergarten in the fall.  So, once a child turns 5, they graduate out of the early intervention program and move into what is called an IEP, an individual education program.  Not just any child can get this, you have to fit in a "label".  No one told me this at the time, so I want to make sure I pass this info along.

Once your child has a "label"  placed on them, they will continue to have it their entire public school education.  So, this means if your child has an autism label at age 5, it will carry with them until they graduate high school.  Also, regardless of the label, if your child starts public school in  special education, though they may not need services every year, they are always considered a special education student. 

I, being the cooperative parent I am, without force, handed my diagnosis from Dr. Autism  to the special education team and unknowingly gave my child the "label" of "Educational Autism," the rest of his public school life.   I will always regret that.  I should have had them prove it to me, by their testing or simply refused to sign the papers until we were certain what our plan was for him.

Around this same time, my husband was offered a new job with his company (where we currently live now) and we decided to move.  (Hopefully this would be the last time!!) So, we moved yet again.  While I knew he was cognitively ready for kindergarten, he was immature for his age and very antsy, he was still tiny too.  I just thought a full day at school was too much for him.

I was also, unsure of what I wanted to say about him to others at this point about his diagnosis.   He was the type of kid, that you probably would not have guessed had an Autism label on him at all, I hated others to judge him, without getting to know him first.  However, I knew I could not just put him in a private school and not tell them anything.  He was still impulsive and I worried he could leave the playground at recess or wonder off, if not carefully watched.   So, after much research we decided to put him in 1/2 day kindergarten at a private school and in the afternoon, he went to a preschool program sponsored by the public school and was able to continue speech and occupational therapy through the school system.

He loved math and could already read, so the 1/2 day program would fulfill those needs and  he was just getting into pretend play with other kids and I wanted him to experience this in a preschool setting, so the afternoon program was a great option.   This bought us a year, to figure out what we were going to do about his grade placement.  If, after the end of the year we wanted to we could put him in 1st grade or he could do a full day of kindergarten in public school.  This next year, would prove to be his most impressive yet!

I'll tell you about it in part 6 (this will be the last one)

My Family's Journey With Autism - part 4

Part 1  Part 2 Part 3

In April of 2010 we traveled to Atlanta to the Developmental Pediatrician, my son had turned 4 a few months before.  Apparently Dev.Peds are in high demand and they come few and far between.  We arrived at the children's hospital and I envisioned it would be much like my first visit, when we visited one in Missouri, a large room with lots of toys and a doctor that spent lots of time getting to know my son by interacting with him.  I couldn't have been more wrong.


We arrived and the waiting room was packed with family's of all ages.  There was a tiny room with toys and the rest was just a typical doctor's office type room.  This is were we sat for 2  hours waiting to even be seen!  I had no idea it would take this long  and I did not prepare for this at all.  By the time we got called back we were sent to a regular type waiting room.  Nothing  for kids to play with, no TV, only things kids could not touch and here we sat for 2 more hours, before the doctor graced us with his presence.

During this 2 hour time period, we were visited by a speech therapist, physical therapist and occupational therapist.  They came in and explained what their job was and what kind of services they offered, (which I already knew, by the way).  They did not spend any time with my son.  Then the doctor's nurse practitioner came in and questioned us.  She again did not spend more then 5 min interacting with my son, she sat there and took notes while my husband and I talked and took turns pulling my son off of the medical equipment.

4 hours after our scheduled appointment time, the doctor finally came in.  He was a smug man from South Africa and after some brief intros sat down and pulled out aball.  My son at this point was climbing  the walls, he was tired and hungry and this was the only toy he had seen in the past 2 hours.  My son took the ball started running in circles and saying "Ball- B-A-L-L, Ball."  (which the doctor pointed out as repetitive behavior, very common in autism)   Then the doctor said, "so do you think your son has autism?"  My husband and I looked at each other and I said, "uh we don't know, that's why we are here."

So the doctor then told us the characteristics they look for in diagnosing autism spectrum disorders.  
Then  he asked us again, "do you think your son has Autism?"  This is where I was unsure, yes he does meet some of the criteria, mostly in regards to social interactions and communication skills, but for me a big part of the Autism Spectrum that I have seen parents struggle with are the child's inability to function in regards to set schedules and routines causing tantrums if not followed.   And children with an intense focus with certain topics and subjects.  While our son likes to know what's coming up and remembers what day we do what, he can easily be persuaded to follow a new schedule and we have yet to see any unusual obsessions with topic matters or objects. 

So he looked at us, after spending less then 5 mintues even interacting with my son and said.

"You have a very special unique boy and I think he has Pervasive Developmental Disorder leaning towards the Asperger's range. "

He wrote a prescription for Speech and Occupational Therapy and told us to do Floortime Therapy and said  to come back in 6 months.  After waiting  for 4 hours, the doctor spent less then 15 min with us.  This was a huge difference then the 2 hours I spent with the Developmental Pediatrician back in Kansas City.

So what did this mean, I later learned PDD is a way of saying your child does meet some criteria for autism spectrum disorders, but  not enough to have a formal diagnosis of Autism, Asperger's or PDD-NOS.  He was leaning towards the Asperger's range, because my son is very bright, which is common in this.   

We went home feeling exhausted and overwhelmed.  I knew my son needed speech and occupational therapy and I finally had a prescription for it, so insurance would start paying for it.  This was such a blessing because we were currently paying out of pocket for this and at well over $100 a session it adds up very quickly.


 However, the insurance company continued to be a pain in my side and refused to pay for therapy because my son was too high functioning.  It was a full time job in itself, dealing with the insurance company and I remember one time losing my temper on the phone yelling at the poor women on the other end.  I told her,

"you think I am making this up that my child needs therapy?  I would much rather be spending money on little league and soccer, but my son can't stayed focused long enough or interact appropriately to be on a team.  I have the diagnosis you wanted, why won't you pay for this!"

I did finally get them to pay for it, after many letters and threatening a lawsuit. 

I became more frustrated as I researched support groups and social groups for my son, only to feel like an outsider in these groups too.  My son was very high functioning and when talking with other parents with the same diagnosis, I didn't feel we fit in here either.  Many of the parents faced children so set in their ways, that enormous tantrums would prevent them from normal day to day activities, such as getting dressed.  I felt bad venting to these people, yet we had real concerns too.  My son, would often leave the house, if he saw something that caught his attention outside.  I ended up putting a stop sign on the front door, so he would stop and remember to ask me if he could go out, it worked too.  He was also so impulsive, he wouldn't think twice about dashing in a parking lot or walking away from us in a crowed place.  It was like those intuitively learned behaviors I didn't necessarily teach my other kids, had to be taught to my son.  Once he was taught them several times he got it, but he definitely had to be taught.  I found these videos by Model Me Kids to be very helpful.

We also found a wonderful facility for our speech and occupational therapy, called Peachstate Pediatric Therapy .   They had the most wonderful facility and staff and really focused on sensory integration therapy that my son needed.  It was like our second home and they also offered camps and social groups. 


Now, none of this, answered why my son was so small.  At the advice of several doctors, we finally went to a Geneticist.  The doctor spent a good amount of time with us and asked alot of questions .  She recommend several tests that she thought could be the answer to our question.  When we got the results, he of course, had a genetic makeup unlike anyone they have ever seen.  He had a partially deleted gene on his 7th chromosome, the closest condition they had linked to this was a heart condition and they sent us to see a pediatric cardiologist.  Thankfully his heart looks fine, but we have to continue to visit the cardiologist every 2 years. 

After the follow up visit 6 months later, when I experienced the same long wait, but this time, I kinda went off on the doctor, he told me he offered services in his private office at the tune of $900 a visit, not covered by insurance and he would be happy to spend more time with me there, at a discounted rate of $750.  Of course we went, because the only other doctor like this in Atlanta, had a 18 month wait and cost $1200 a visit.  (however I ended up making an appointment with him after I learned our doctor was  refereed to as Dr. Autism, because he gave the diagnosis so freely).  Dr. Autism, did spend more time with us (45 min) at the private office visit, but gave us advice, like don't waste your money with special diets and supplements and  "don't put your son in team sports, kids like him don't get the "team" aspect."  Sorry doc, we didn't listen to your advice and did it anyway and read here what happened.

After learning our doctor's nickname and how he gave the diagnosis so freely, do I think he was wrong about my son?  What I think, is the reason autism seems an "epidemic"  is because there are so many kids diagnosed by symptoms that "look" like autism, but are really side effects of digestive problems that are affecting their development.  I feel like many of the therapies offered to my son, once he had an autism diagnosis were extremely beneficial to him.  But I think medical doctors are missing a large piece of the puzzle, when they only look at behavior, not health and digestive problems too. 

However, the  Asperger's diagnosis did lead me to read more and more about diet and nutrition to help behavioral concerns and how many of these kids had digestive problems too.   I found an Environmental Medicine doctor, who had a child with high functioning autism.  This of course was not covered by insurance, but I still had a gut feeling this could be helpful.  We had many tests run, included organic acid panels, metal tests and urine and stool and blood test.  The results showed he needed a variety of supplements to help regulate his neurotransmitters and aid his digestive system.  He also had unusually large amounts of Aluminum (found in vaccinations)  in his system and oxidation problems.    We started various vitamin and mineral supplements, as well as digestive enzymes and herbal supplements.  We couldn't be happier with the results we started to see.

I'll tell you more in part 5

My Family's Journey With Autism -Part 3

This is a series of posts telling my family's journey with autism.  Click here to  read part 1 and part 2.


So, my son was 3 and just was diagnosed with Sensory Processing Disorder and I nor anyone in the tiny town I lived in had ever heard of it.  So, I researched it like a mad women.  I started developing a sensory diet for my son.  This has nothing to do with food, it is a personalized activity plan to help my son stay focused and organized during the day.  We also went to OT, but I had to drive 1 1/2 hours for it and so we only went every 2 weeks.

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

Then, in a two week time period, my husband was offered a job in Georgia (we currently lived in Missouri) and I found out I was pregnant!   Both ended up being the biggest blessing, but I was frustrated, tired and overwhelmed.   We have moved about every 2-3 years for my husband's company.  Thankfully, his company hires people to  pack and unpack our home, so as far as moving goes, we have it pretty easy.

Luckily, we were also moving back to a town, we had lived in 3 years before, it was where both my sons were born.  We joked with our wonderful doctor, that we came back, just so he could deliver my daughter.

Weeks after we found out we were moving,  I remembered a unique school called Challenged Child and Friends was located in this town.   They were an early intervention program for children with special needs and the classes were integrated with typical children.   I remember looking at their website and reading they helped children with Sensory Processing concerns and I started crying.  I felt like I was finally going to get support and help.   We couldn't move to Georgia fast enough.  God had provided us with just what we needed!

We moved to Georgia in the summer of 2009.  My oldest was to start Kindergarten and my middle son would start preschool 5 days a week for 3 hours a day.  I finally had a safe, understanding, educational facility that I felt comfortable leaving my child.  For the first time, I did not feel like an outsider, my child fit in, there was nothing he did that shocked the teachers, he had support and I finally had a much need break.  We found out we were having a girl and I was thrilled.   We purchased a beautiful home near my husbands work, so he could be home more and things were starting to look up!

After we got settled, I took my son to the new pediatrician, gave her the low down of my son's health and development history and she recommended going to see another developmental pediatrician.   The waiting list was 9 months, so we made the appointment  and waited.

Right before my daughter was born, my son had been gluten free for almost 2 years.  We started introducing dairy about a year before and saw no change in his development or digestion, however he refused to drink milk and still does to this day.  So, we introduced gluten and again did not see any major changes.  It was a relief to be off such a restrictive diet.  The holistic doctor we were seeing, said, due to my son's digestive problems at birth and the case of Salmonella this made it harder for him to digest dairy and gluten.  Allowing the gut to heal for an extended period of time allowed him to be able to tolerate the harder to digest foods again. This belief was reconfirmed when I read the book, Gut and Psychology Syndrome a few months ago. 

 While we were seeing progress, we still had many concerns, he was still very sensory seeking.   It was exhausting, it was just too hard for him to sit still.  Going to the store would require a 30 min pre-leave sensory diet, so he wouldn't be dis-organized in the store.

He also still struggled with conversations.   Back and forth meaningful conversations were really difficult for him.  He was great at asking for things he wanted or needed, but if you asked him a who, what, when, where or why question, he would often ignore you.  It was very frustrating and it was hard to connect with him.  He was happy and very loving, but it was like pulling teeth to get him to have a conversation with you.  He often would repeat movie lines if you asked him a question or give you a totally off the wall answer.

He was getting speech and occupational therapy, we did sensory diets,  body brushing, therapeutic listening and stayed away from as many artificial dyes, colors and preservatives in our food.  He took fish oil, probiotics and a multivitamin daily.  He never complained and honestly it was harder convincing others why I didn't want him to eat junk food. I have linked articles to these ways of treating behavior concerns, if you want to read more information. 

Most of all during this time period, I made the biggest change.  I stopped feeling sorry for myself and embraced this was our way of life.  The way I envisioned myself as a mother and family was shifting.  I no longer desired to be all Martha Stewarty when it came to birthday parties or with my home, the luxury of free time was not in my hands.   I stopped desiring joining a country club or volunteering for Jr. League, this lifestyle was simply not in my cards.   I became more humble and focused on just making it through another week.  I came to realize I was my children's  most important advocate and teacher and that trumped everything else.

I also saw so many families around me at his school everyday, in much more difficult circumstances.  Children that would never walk or talk and kids with severe learning and behavior problems.   A child in my son's class, was burned from a fire and had no hands or legs.  She smiled and spoke to me every time I dropped off my son.  I started feeling blessed to only be dealing with a child that was impulsive and struggles with conversation skills and sensory processing.

 Every night I went to bed, knowing my son loved me, because I heard the sweet words from his lips and  felt his tiny arms wrap around me in an embrace, not all parents are so blessed. 

Though we still had many unanswered questions, I knew God sent me to this school to be filled with compassion and hope.  It was just what I needed to prepare me for I what our new Developmental Pediatrician would have to say.

Stay tuned for part 4.............