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.............

 

My Family's Journey With Autism -Part 2

I'm back for part 2.  For those of you just reading this, start here.

So, I was with my 3 year old and 20 month old at the Pediatric Ophthalmologist.  I had taken my son in for a drifting eye.  I was feeling a bit Munchauseny at this point for taking my son to yet another doctor.  The doctor was lovely, but I immediately knew something was wrong when she got not 1, but 3 colleagues to come take a look at my son's eyes.  She said very calmly.

"Your son has unusually large optic nerves, we typically see this with brain tumors.  I'm sure he is fine, but we need to schedule an MRI anyway. Oh, and he is extremely far sighted and needs glasses and has a lazy eye that needs patched daily." 

I felt like I was being punched in the stomach.  I felt my world spinning around me, at the same time I had 2 crying kids complaining they were starving and had to go potty.  I'm not sure how I even made it back to the car.  I remember calling my husband who was at work and in between sobs telling him the news.

I pulled it together and went to the nearest Lens Crafters and bought my son his much needed glasses.   As I got to the mall, I had 2 crabby kids and I was feeling like the worst mom on the planet for not knowing my child needed glasses.  They had 1 pair to choose from for toddlers and they looked huge on him.  They also couldn't do anything special to the lenses to make them NOT look like coke bottles and they were thick!  In about an hour, they brought them to me and I teared up as I put them on my sweet boy.  But God knew this was hard on me and he provided me with the sweetest gift.  Up to this point, my son had not yet called me mama.  But as soon as I put those glasses on him, he looked at me, cupped my face with his hands and looked me square in the eyes and said "MAMA.

We went home and the next 4 weeks were a blur, as that's how long we had to wait to have an MRI.  I tried my hardest to not research brain tumors, but any human with a computer knows how that goes.  I prayed and prayed.  For me, this was a point in my faith when a peace passed over me and I knew whatever it was, it would be ok.  We were able to special order some better fitting glasses with thinner lenses.  He looked stinking adorable with his glasses.  I heard so many horror stories about toddlers and glasses and he was a dream, he never complained and in the beginning didn't even mind patching. 

Finally, the day arrived for the MRI and we had to leave our home at 5 am for a 7 am appointment.  My hubby and 3 year old came with us.  They gave our son something to help him relax and if I remember correctly the procedure only took about 30 min.  Thankfully, God answered our prayers and he did not have a brain tumor.  It is noted that he has "unusually large optic nerves" and they said if he ever goes to the emergency room for head trauma, be sure to tell them this, because they will think swelling of the brain is causing it. 

By this point, my sweet boy was not even 2 and I had had about enough of the medical community freaking me out, only to leave me with no answers.  I started taking his health in my own hands.  I researched and found a Gastroenterologist that offered testing  from home for food intolerance and digestive issues.  I was desperate for answers and ordered them right away.  At the time, this felt a bit weird and strange, but the standard medical community was at a loss of what to do.  Now, this was right about the time "healing" autism was starting to pick up steam, but the websites and blogs were not saturated with info like today.  Also, this holistic, type of medicine, is very expensive and insurance does not cover it.  My pediatrician, told me not to waste my money, but any mother with a sick child knows that sort of advice doesn't hold clout with a mother looking for answers.  

I saved some poop and sent off the tests.  The results were that he had an intolerance to gluten, dairy and soy.  On his second birthday I took away all three foods from his diet.  What happened next amazed even the naysayer doctors.

 It was like a light switch went off.  My son started talking and in a 2 month time period, went from a 6 month language delay, to no delay at all.  He went from being clingy and lethargic to the Energizer bunny!  He was into everything.  He explored  everything.  The Pediatrician was really amazed, but would never admit it was the diet, she just thought he was a late bloomer.  After 3 months on this diet, he was able to stop iron supplements and for the first time since he had Salmonella had normal looking poop.    His growth pattern did not improve, he was still in the 1% in height and weight.  Those of you that know me personally, know I am a itty bitty thing.  I'm 100 lbs and 5'2 .  But even so, the smallest my kids should be is in the 30% they said.  So this was still a concern.

So they sent us to be tested by Endocrinology.   At our local children's hospital they wanted us to put our son on Human Growth Hormone, at the tune of $3000 a month.  Of course, insurance would pay for 80%, but still, that is a shot EVERYDAY for the next 15 years.  Since he did not have a growth hormone deficiency, this was purely cosmetic and he may only achieve 1-3 inches in added height.

So, I hopped on a plane to John Hopkins, for a second opinion.  I decided early on, when one doctor tells me to do something drastic to my child, I will find the best doctor in the field in the country and see if they agree.  Guess what, he didn't.. he said,

 "don't do growth hormone yet,  your son is in the 1%, someone has to be.  If you want more answers go to a Geneticist. "

  
At this point, my son was 2 1/2.  In the small town I lived in "everyone" put there kids in a mother's day out program.  I was desperate for a break.  With no family in town and a hubby that worked a long hours, not much time was spared for me to get a break My husband was a great help when he was home, but at this point we were both physically and emotionally drained.

 You see, even play dates were exhausting, my son, would not just play at others homes, he would tour them, opening every cabinet and door.  Get in showers, crawl up stairs, climb in laundry baskets. It was actually more work to be at someone else's home.  Unless the TV was on, my son was getting in something and he was quite as a mouse.  I used to put bells on his shoes, just so I could find him.  I would call and call his name and he would answer, but in a normal tone, so unless I had found him, I couldn't hear him.  He was also fearless, which is scary in a 2 year old.  He would love to climb and jump off things, the higher the better.  He was like a little monkey.  So I jumped at the chance to get 4 hours free a week.  But it turned out to be harder on me emotionally then keeping him home. 

The first week of preschool, he quietly left the classroom and was found about to leave the building, by a secretary of the church, the teacher did not even know he had gone.  He had to be watched like a hawk!  He had many sensory issues, of course at the time I had never heard of this and I had no idea what was going on with him.  The best way I know how to describe him was he had to do things "harder" then others to get the same feel.  He often stomped when he walked, hugged someone until they fell over, kissed til he
 bit,  and was like a ping pong ball bouncing off the walls.  

It didn't help,  that to me, his class seemed very calm and well behaved.  It made me feel all the more out of place and this is when the comparison to other children bothered me the most.  I felt like "that mom".  You know, the one I often thought had no control over their child.  The child, that every mother in preschool loathed, because they were often the cause of  their child's tears.  It is a very lonely, humbling place to be as a mother.  Everyday I would pick him up with a sense of dread. What are they going to tell me he did now?

I lived in a very small town, the resources were nonexistent.  I needed help, but didn't know what to do.  We had no diagnosis and my son did not have enough of a delay to qualify for the early intervention program.  We saw results with the gluten and dairy free diet, but it was hard to implement (remember this was 5 years ago in a small town, I would have to order everything online and drive 1 1/2 hours for bread).  We were also seeing a holistic doctor and while she was helpful, her prices were insane and not covered by insurance.  

During this time, we also lived in a home that was like the money pit....that is another series in itself....but at this particular moment, on Christmas Eve, we had a frozen water pipe burst and do $35,000 worth of damage and cause 6 weeks of remodeling on our home (thank God for insurance).  To say the least it was very stressful on both me and my husband.  

We went back to the Developmental Pediatrician, when he turned 3.  He said...

I think he is one of those kids, that is borderline, he doesn't really fit in any diagnostic box, if anything he has signs of ADHD, but is really to young to be sure.    Just keep doing what your doing.  There is no reason to come back and see me again, until he is school age.  

Again, I was relieved, but I wanted answers.   By the end the school year, the teacher  pulled me aside and suggested I take him to be evaluated by an Occupational therapist.  She diagnosed him with Sensory Processing Disorder.  I finally had a lead and bought every book I could on the subject. 

I knew my son needed support and it became up to me to give it too him, then God did the most amazing thing, just when I was at my lowest point!  

Stay tuned for part 3......

 

My Family's Journey With Autism- Part 1

April is Autism Awareness month. Autism Spectrum Disorders affects 1-88 children in the US.     For those of you that don't know, autism has affected my family's life.    We have all grown and stretched in ways I never would have thought possible without these trials in our life.  I have become a completely different person then I thought I would be as a mother.  It has been a hard journey, I have cried many tears and lost my temper in frustration when  answers were not given. We have felt things that parents of typically developing children may never feel.   I have avoided play dates and social outings, because I couldn't stand to be around "typical" kids.   I have laid awake at night in fear of what the future holds for my son. I have felt ashamed that I would feel these things, when I have seen many other parents deal with much greater and devastating challenges with their special needs children.

 But I can say after 7 years with him and his health and development challenges, I'm feeling more positive then ever!  This journey has made us (and our marriage) stronger, wiser, more compassionate and most of all,  even more grateful for this special little boy God has blessed us with.  I feel the need to share our story, to offer families hope, who are placed in similar situations and share what we have done to help our son reach his highest potential.
 

As a precursor to our story, we moved to a new state, due to a job transfer, when my son was 2 weeks old, I also had a 22 month old. I did not know a soul in the town we were moving too and family lived a couple hours away.   As an infant, my son was tiny, 1% in height and weight.  He suffered from severe acid reflux and from the time he was a few weeks old we started seeking medical treatment.  He would  throw up huge amounts after every feeding and at night he often choked on his vomit, leaving me too many sleepless nights.  He slept on me the first 4 months, simply, so I would awake with any choke, cough or quiver.


We sought treatment for his acid reflux and tried medication and special formulas, even though he was breastfed, thinking he was allergic to my milk.  Nothing really helped, but time.  Then to everyone's astonishment, he contracted Salmonella at 5 months old.  He was only breastfed during this time.  Doctors were baffled how he could have contracted this.  The best scenario they could come up with, was it was during the peanut butter Salmonella outbreak and I ate PB all the time, they think I got it, but didn't have a bad reaction and passed it in my breast milk to him.  He had 10 days of bloody diarrhea,  but no treatment was given. One week after he recovered, he was given 5 vaccinations.  At the time I remember asking my doctor if we should wait until he had fully recovered and his reply, was, "do you want him to get sick again?"  I uncomfortably agreed to give him his vaccinations, but to this day I regret it.  
 

Do I think vaccinations caused my son's health issues?  The short answer is yes, I believe they played a part.   I believe because my son had digestive problems from birth and the Salmonella exasperated his gut problems.   Then, when given the vaccinations on an already stressed immune system, his body struggled to recover, causing developmental issues. I have recently read the book by Dr. Natasha Campbell-McBride called Gut and Psychology Syndrome.  For me, it was like all the pieces of the puzzle falling into place, including my health prior to getting pregnant.   You can read more about it here.  I highly recommend it if you have a child with digestive and development issues.  Now, before you freak out, I want to say, I believe vaccinations are fine for healthy babies.  My older son has had all his vaccinations and my daughter is on a revised schedule.   But, in telling you my story, I do believe they played a role. 
 

At his 9 month checkup, they checked his iron and found it very low, they were supposed to do this at 6 months and "forgot".  They had us come back immediately for further testing and prescribed him with extremely high doses of iron supplements. At 12 months, they were concerned at his delayed language skills and his continued 1% growth, they called him failure to thrive.  At 1 he weighed 17 lbs!!  We had started seeing a new doctor after the iron incident and she wanted to start testing him for many different issues, including Cystic Fibrosis, Celiac disease and liver problems. For 5 months my poor little baby was subjected to pokes and testing that made me cringe and all the tests came back normal.   I spent hours researching his symptoms and praying.  I remember the night before he had an upper GI, holding him in my arms crying out to God to heal him or find answers.  This was my hardest stage to date as a mother.  I had no control and my little baby could not tell me what was wrong, it was a very hopeless feeling.  I couldn't give up and not keep searching for answers, when clearly something was wrong.

After the upper GI, which caused my son to stop breathing and they had to give him a tracheal intubation, the doctor came out with the wrong test results (this was at a very well know children's hospital! ).  After finding the correct records, they gave us a diagnosis, Eosinophillic Gastroenteritis.  I was overjoyed, we finally had   a diagnosis.  I immediately found the leading hospital in the country that dealt with Eosinophilic disorders and made an appointment.  Before accepting my son as a patient, they wanted to review all tests and medical records.  Two weeks later I received a call from the head doctor's office, that they WOULD NOT see us, because my son, did not meet the criteria for Eosinoplillic Gastroenterisits.  I felt crushed.  I went back to the Children's hosptial in our area and they basically disagreed with the leading specialist in the country.    They said they have run every test they can and if it's not this, they don't know what it is. I was discouraged and upset and stopped seeing them.

Meanwhile, my son was still not absorbing ample iron even with massive doses.   After receiving his 18 month vaccinations  he stopped waving and playing patty cake.(yes, I gave him more vaccines, after another gut feeling I shouldn't, the doctor said, he would be fine and I believed him.)  I felt like I was, "damned if I do, damned if I don't." He had constant dark circles, cligned to me at all times and sucked his fingers.  He was very loving, content and easy going, but I could  tell he didn't feel well.   I made an appointment with a Developmental  Peditrican and when they heard his symptoms a 6 month waiting time, shrunk to a 2 week wait. 

When we arrived at the doctor, we sat on the floor and the doctor graciously spent 2 hours talking to me and interacting with my son.  His impression was:

"A language delay possibley due to a nutritional/allergic component, which would be difficult to confirm.  He does not meet or even approach criteria for Autism Spectrum Disorder at present.  Cognitive delay is not present."

I breathed a sigh of relief, but was still frustrated because we did not have any answers.  We called the birth to three program in our area to see if we could get services in the form of speech therapy and my son did not qualify.  We then took the liberty of hiring a developmental therapist out of pocket, who came once a week and worked with him. 

 I spent all my free time researching and watching episodes of Mystery Diagnosis, looking for answers.  Then, around 20 months,  I started noticing  his right eye drift in every once in a while.  I can remember being embarrassed to call yet another doctor, but I also new I couldn't ignore it.  I made an appointment with a Pediatric Ophthalmologist.   I made the long trip with my 2 kids in tow, hoping for a "he's fine, you are overreacting."  I was not at all prepared for what they were going to tell me.


Click here for part 2.............................

When Life Gets You Down, Show Kindness To Others

as i sit here at 6 am it looks like a winter wonderland outside!
i have seen every type of  water come out of the sky 
rain, ice, sleet, snow....it won't STOP.
it is really getting on my nerves.  

while this week started out great
the joyfulness of the email i received Sunday 
is slowly getting buried by the weight of snow and ice and life's trials.

my pup, Maggie, is sick with something.
the last 2 nights she has been waking me up every 2 hours to pee
then she struggles to jump on our bed,
 so she reaches her paw up 
and scratches me to get my attention
when i  help her on the bed
she stands, hoovering over me panting
i just sit and pet her and tell her its going to be ok

the last time we had a pet act goofy like this
we found out he had cancer and died 5 days later!
 i'm worried.

i also found out i have to go back to dermatologist and have 
more skin removed, where an atypical mole was. 
not cancer they say, but could turn into it, if not removed. (wear sunscreen people)

i also am making some big plans for school next year for the kids
while i feel a great peace about it, it is also very overwhelming
i'll share more when i have completely wrapped my head around it.

i have a couple blog friends going through some stuff.  
crazy, "God, where are you ?"  stuff.  its time's like this where
you wish you actually lived close by and could take them cookies
or dinner and sit with them and let them vent.

i  found out about a young teen from my hometown who
took his life due to bullying.
what is wrong with kids today?
the careless words and actions upon others
 HAS GOT TO STOP!   
to show support and awareness for bullying please like this Facebook page.


BUT, despite all this, i have not lost faith. 
for me, when the storms of life come tearing at us
trying to make us stumble, fall and lose faith, that is when i am clinging to my faith even more.

how do people get by without it?   i wrote more about this here.

found here

when is all the hatred and anger against others gonna stop?  
who are we to judge? 
show love and kindness to others
who are we to cast stones at others?

God is big.  He is Good and Loving.  
He did not promise easy, perfect lives.  
in fact He says the opposite, he says we will face trails and we should be joyful in them!

4) Count it all joy, my brothers, when you meet trials of various kinds, ³ for you know that the testing of your faith produces steadfastness. ⁴ And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.
James 1:2–4 (ESV)

we are all going through "stuff"
we all need encouragement and love
we all need faith in something bigger then us
show kindness today.  
smile at a stranger.
open a door for someone.
pay for someone else's lunch.
offer to help a friend in need.
we have so much we are capable of to help others
don't dwell on your trials, embrace them and show others
your FAITH IS BIGGER THAN YOUR FEARS!

   

Why Still Room To Grow, Is Even More Special To Me!

So Sunday night I was laying in bed with baby girl singing her some of my favorite sweet inspirational songs.  All of them, I picked up at the summer kamp I told you about here, including my favorite song and inspiration to my blog title,  Room To Grow.    By the way, I should point out I am NOT a singer.  I do love to sing sweet tunes to my babies, but once they reach about 5, they become wise, that I don't sound very good, so the requests stop coming.  Anyway, Miss B, still likes my singing voice.

While I was singing I heard my phone ding,  that I had a new message.  After she was asleep, I went to check my email and just about died, when I saw who it was from...  It was from ASHLEY JOHNSTON, singer and song writer of the song, I was JUST singing to my little moments before!!

She wrote, that a friend of hers, saw my blog and post about her song and e-mailed her, she said was "speechless"..... What!! She was speechless, so was I!!

I immediately wrote back and was all giddy and told her my maiden name to see if she would have remembered me from Kamp 20 years ago.  Then, while I was waiting for her reply, I panicked and started thinking, it could be some stalker that was trying to find out where I lived....you know, they read my blog, saw my post that I had been trying to find Ashley and saw it as an opportunity to find out where I lived....Ok, Ok I know I have seen WAY to many lifetime movies, but jeez, in this day and age, it's hard to trust others!!

So, when she replied, she said she did remember me and asked where I lived...so I made her answer questions that I know the only real Ashley would know....I am so silly I know.

She immediately answered correctly and I knew it was her, then I felt foolish for suspecting a creeper...

Anyway, several e-mails later.... she is fantastic!  She is so sweet and humbled that I would still be listening to her sweet music after all this time.  But really, I am the one humbled!  The thought that she had such a strong faith in her 20's is amazing to me.  Even though I have been listening to this poor little worn out tape for 20 years, I am just appreciating some of the depths of her lyrics, in my mid 30's.  Particularly this one,
"I love to hope the faith, I know You'll never leave." I am just realizing this about God's love for me...for us... and she could write about it in her 20's. AMAZED!   It has been so cool to be able to tell her that, that I have been  so touched by her music, for so many years. 

I have a new appreciation for her and her songwriting and I also found out she is a very talented artist! 

It has been the coolest experience and I'm so thankful her friend saw my blog and e-mailed her and that she contacted me. God is so awesome!

Now my blog title means even more to me then before.