Friday, November 10, 2017

IEP

"This will only take 30 minutes."  LOL.  Nope.

We are 2 months into the program, and the speech therapist just found out Aiden has autism.  So much for his IEP--individual education program, right?  WOW. "We should have had this conversation before he started [speech therapy through the Virtual Learning Program]."     The meeting started with her intention to do further testing for Aiden...no need my friend.  We already know what is going on.  Aiden's brain is processing information differently.  

He has autism.  

What a start, and it didn't end well either.  Aiden needs more help.  The lessons are going too fast for him. He is learning, but slowly, and it is very difficult for him to put information together and think critically.  

I'm in over my head.  I feel pulled in too many directions, and inadequate in every one of them.  I pride myself on hard work, perseverance, and balance in all aspects of my life, but this is too much.

  If money grew on trees, I would hire a retired special ed teacher to do the 3-4 hours of work that I'm attempting to do each day.  We are blessed to have about 8 hours of support each week, but I still feel overwhelmed and inadequate when it is my turn to take charge of his education.  I feel a lot of guilt surrounding our 3-year-old too.  He is bored and he doesn't get a lot of time with mom because I'm working with Aiden.    

Then there is my job.  It is so hard to build a business--that I'm super passionate about--when everything else seems to pull me out of alignment.  Weekends are such a relief, and I truly can't wait for Thanksgiving!  

So, I move forward praying that I can get through this year--putting Aiden back in school isn't the right thing to do, and neither is closing my business.  I have to trust that it will get easier as time goes on.

I will get through this!  

Thursday, October 5, 2017

Validated

We are 1 month into homeschooling Aiden virtually, and I feel validated in our decision.  After Aiden tested at a 1st grade level, I once again asked if we could do 3rd-grade material (Aiden is now in 4th grade).  This time, there was no fight.  Aiden immediately went to 3rd-grade material, and I can't tell you how much pressure that took off my shoulders.  Suddenly, this seems possible to balance it all!  

Aiden is now thriving again because the material is familiar and more appropriate.  

Fight for your kids.  YOU know what is best.  I was told last year, "the research says that is not in his best interest to hold him back".  I call BS.  My child is not a statistic.  I don't care what the research says.  I care about what is going to make Aiden succeed.  I want him to gain confidence and not get frustrated with learning.  He was not ready for 4th grade.  I knew it, and our Heavenly Father knew it.  

I'm so grateful I listened!  


Tuesday, September 12, 2017

Virtual Learning

Back to School!
Our first experience with homeschool/virtual learning!
When our Heavenly Father calls you to do something, he finds a way for you to accomplish it!  

I've asked the School District of Janesville and Milton School District if Aiden could repeat 3rd grade this year, but I was told, "that isn't in the best interest of the child."  I decided not to fight the system, and put Aiden in God's hands.  So, homeschool it is.  It just felt right. Keep in mind, I run a business from my home and work 3-5 hours (or more) a day on marketing, research, and program design. Spiritually, I know what I do professionally is essential to my own progression in this mortal existence, and although the timing is awful, He will help me find balance this year.  

Our first week was rough.  Balancing travel, childcare (and lack of it) for Avery, 3 hours of 1:1 coaching (by me) with Aiden, laundry, dishes, cooking, cleaning, AND a part time job was definitely a challenge!  Watching Aiden struggle with simple concepts and putting ideas together confirmed our decision to keep him home this year.  Yesterday, I taught Aiden how to do laundry, had him help me with chores (dishes, trash, clean rooms), then we did 3 hours of virtual learning, I took my kids to karate, cooked dinner, and spent the evening creating programming for my business.  A 15 hour day will be my norm!  WHOOP!  Thank goodness that I make sleep a priority, and have time management skills!  I've got this!  Here's to a GREAT school year with FAITH in moving FORWARD!  New school for Ash and Austin, preschool for Avery, and homeschool for Aiden...hopefully a new home next year too! 



Sunday, July 23, 2017

Moved Out

2 moves, a rental, and a lot of ants!

We've moved out of our home of 11 years.  From the time our home sold to the time we moved out, it was a total nightmare, but we made it!  It was easy to walk away from all those memories after what we went through to sell our home--perhaps a tender mercy of our Heavenly Father?  We made an offer on 3 homes, but lost the bid each time (1 was over 6,000 above listing price!)  The housing market is nuts, and so is the rental market.  We were very lucky to find a place to rent at the last minute.  After a 2 week stay with family, we are settled into an apartment where the neighbors stay up all hours of the night (and the cops get called), the ants are the size of dimes, and there is no central air.  We are hot, but grateful to have a place to make summer memories in.

Gratitude is our friend.

I'm grateful that Aiden and my other boys have endured this transition so much better than I have!  It feels like we are staying in a bad hotel, but attitude is everything, and we are doing just fine. 

I'm super proud of Aiden!  After 5 years, Aiden is going to pass level 1 swimming!  He is becoming a little fish, and really surprising me!  He has been getting breakfast and milk for his brothers ON HIS OWN each morning without my prompting or encouragement.  Aiden is growing up, and I'm super grateful for the moments when it feels like autism is not part of our lives.  Aiden has been a big help with taking out the trash when asked, and helping with his little brother who will be 3 in August.  

We finally found a tutor for Aiden to help him with math and reading, and she is wonderful.  I know spiritually, that I need to homeschool Aiden this Fall to catch him up.  I'm nervous because sitting and patience, are not my thing; plus, I run a business from my home, so I'm worried about balance and keeping the stress level at a minimum during our transition to a new home. It feels right though, and I know it is temporary, so I am going to give it a go and hope for the best.  I've turned it over to our Heavenly Father.  

We've enjoyed swim lessons, summer school, martial arts, the Splash Pad, and the library this summer, and it has been great!  I continue to find gratitude that our lives are stable again if only for a moment.  I am hopeful that we can catch Aiden up this school year, just in time for him to enter Middle School.  Where does the time go?  I will have a middle schooler in a year!  Oh my!

Tuesday, June 6, 2017

Carried Out

What a rough year so far on all counts, but we are going to make it!

I haven't documented our journey in 3 months because we are going through a rough transition.  In January, I felt spiritually that it was time to sell our home of 11 years.  I trusted that revelation, and knew that was always part of the plan.  We outgrew our home years ago, and have made it work successfully with the older boys in the basement and the younger 2 upstairs.  I was excited about the prospect of finding a new home for our family that Abe and I could choose together--a place where we could have more space for our boys to be well, boys!  

I had no idea what would happen next!  

As soon as we sold our home, nothing fell into place from there.  Our home appraised low, there was something wrong with the roof, the houses we were trying to buy fell through, and then there was no time left to even find a rental to move into.  The stress was more than I could bare.  I had no idea what it felt like to not have the security of a HOME.  No idea.  While I have always appreciated our home--no matter how small it is--I never would have anticipated the emotional strain losing stability could put on a person.  

Now add to that a child who is struggling to live in a world that he doesn't quite comprehend.  The teacher was giving out Skittles for something, and Aiden didn't earn one, so he refused to move from his spot.  The teacher asked a colleague to come get me, but I was no help either.  Aiden refused to leave the school.  He remained firm and pouting behind his desk.  Stuck.  After trying to reason with him, I eventually had to pick him up and carry him out of the classroom and to our home (thankfully it was still across the street).  My 3 other boys tagged along behind us.  

Well Aiden, I feel pretty stuck too.  I don't understand either.  What is there to learn from this?  How do we move forward now?  What does our Heavenly Father want from us, and how can we endure it well?  

Yesterday we finally signed a lease for an apartment.  That leaves us with 2 weeks to stay on someone's couch as a family of 6.  Where do I put Aiden in school?  Is this the time to home school?  So many uncertainties.  So many questions.  

What is NEXT?

For now, I'm doing my best to live with GRATITUDE for the many gifts and blessings we do have.  We have each other.  We have supportive family and friends, and we have our health.  I've never felt the power of someone else's prayers until yesterday.  This will be ok, and something good will come from it!

Staying hopeful for a fun, healthy summer!

Saturday, March 11, 2017

Keep moving forward


Valentine's Day 2017

  It is amazing to me how drastically your life can take a very unexpected path in just a single moment.  A fitness friend of mine lost her husband in a tragic accident a couple weeks ago.  They were High School sweethearts and had 4 beautiful children the same age as my boys.  I lived right along with her as I enjoyed her inspirational facebook posts as a working mother of 4 who runs marathons with her husband.  I admired her, and I admire her even more now that she inspires me to move forward even when tragedy happens.  Her posts now are just as inspiring--if not more so--than they were before the accident.

And so I reflect on that as I share this journey of ours.  We can move forward with faith, or we can get "stuck".  The choice is entirely ours to make.  It is my experience, that surrounding yourself with positive, encouraging people, living the way our Heavenly Father intended, and embracing paths that keep you moving forward are how we see the miracles within the trials.  Feeling stuck is where the adversary wants you, and nothing good can ever come from that.  I know what it is like to feel stuck--to not see the light at the end of the tunnel.  I will not live there anymore.  That was my journey 10 years ago.  It is not my path now.

As we move forward...

*I am living my dream to build a name for myself as a fitness and nutrition professional and have a successful practice in a field that I love.  I've met some incredible families and people along the way, and I'm super grateful they trust me in their journey into wellness.  This is a path that is divinely appointed for me to gain faith in myself, and I'm getting there.

*We are preparing to sell our home of 11 years.  The house where we brought our babies home.  The house where we built our marriage.  The house that I bought as a single woman just starting out in my career.  Again, it is by divine design that we move forward.  It is time, and I trust that our next adventure will fall into place just when we need it to.  

*Aiden has completed 3 years of therapy for autism.  This is yet another big change for our family, but it feels right to have completed this stage of his journey.  We are in the process of hiring a tutor for him.  School has proven to be a significant challenge, and he needs 1:1 help with math, reading, and taking tests.  Aiden is easily distracted and loses his focus when things aren't important to him (school).  On the other hand, he can sit for hours and put together a Lego set on his own.

*Aiden is now 9 years old and is showing more assertiveness in standing up for himself with his brother's (no more "mom Avery (age2) did ________.")  That also means a shift in parenting on my end, which is hard to navigate, because it is uncharacteristic of Aiden to hit/show aggression.  I'm curious what hormone changes will do to his behavior patterns!  

*Aiden tried a new food today!  I made peanut butter/chickpea/honey/chocolate "cookies" today, and we ate the dough before I baked them.  Aiden had no idea what was in them, so he actually tried it!  He had 3 large spoonfuls (I was so excited) before he started to gag.  Excitement gone.  Tonight for dinner he ate real bacon crumbles, whole grain croutons, and parmesan cheese.  That is the best I can do to provide "balanced" meals for him.  If I wasn't a Dietitian, I would be seeing one!  The blessing in that struggle is I feel uniquely qualified to help other families navigate sensory problems related to foods.  

So we move forward with hopes that Spring/Summer brings a new home for our family, a tutor for Aiden, and more faith in the miracles I know are waiting for our family!

Tuesday, January 31, 2017

Nutrition Research

Pondering, praying, and researching about autism and nutrition for my presentation in March.
Here are some key facts and conclusions:


In 2016, the Centers for Disease Control's Autism and Developmental Disabilities Monitoring (ADDM) reported that approximately 1 in 68 children in the United States has been identified with an Autism Spectrum Disorder (ASD). This rate remains the same as in 2014, which is the first time it has not risen.  --taken from a Google search. 

1 source indicated that globally, autism occurs in 1 out of 160 children--WOW!

Some speculate that the increasing number of children with this diagnosis is due to 1) improved awareness, 2) better diagnostic tools, 3) expansion of diagnostic criteria.

A genetic component and environmental effects such as air pollutant exposure, prenatal infections and dietary composition changes are reviewed in the literature as possible risk factors for ASD.  I was recently told by a psychiatrist that is rare to see a child with an ASD have 3 siblings without the same diagnosis.

The DSM-IV stands for the Diagnostic and Statistical Manual-Fourth Edition.  It is published by the American Psychiatric Association to provide diagnosis criteria for autism and related disorders.  The criteria changed in 2013 to no longer include the "labels" Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).  Autism is now diagnosed as "Autism Spectrum Disorder" with different "levels of severity." 

Autism is defined/diagnosed by 3 different characteristics: 1. lack of social and emotional reciprocity, 2. limited verbal/non-verbal language skills, and 3. presence of stereotyped and repetitive behaviors.  

 Abnormalities of brain structure and function are found in people with ASD.  ASD alter the way nerve cells and their synapses connect and organize info processing in the brain.  It is not known exactly how or why this occurs.  Therapy includes applied behavior analysis (ABA therapy) and sometimes SSRI's, antipsychotics like Risperidone, Occupational Therapy, Physical Therapy and/or Speech Therapy.  

Although NOT required for diagnosis, atypical eating behaviors, limited food selectivity, food refusal, and behavior problems at meal times are COMMON.  Research has been conducted on how this affects nutritional status (vitamin/mineral intake, macronutrient intake (carbs, proteins, fats) and the affects of special diets (i.e. GF/CF, SCD, and others) on behaviors and health.  

Here are my "takeaways" from the research:

*It is very challenging to conduct research on outcomes of special diets.  1) limited funding, 2) limited sample size (some had only 14 children participate), 3) high probability for intakes outside of the testing parameters (i.e. did the kid sneak a piece of cake at an event or get "cross contaminated" while eating away from home?)  Too many variables to expect the subjects to adhere to 100% GF/CF diet for 6 + weeks. Hence, why research on this topic is underfunded and the conclusions are inconsistent.  Celiac disease occurs in 1 out of 110 people, with 6% of the population having some form of gluten sensitivity.  Of course, the study with 14 children didn't yield results!  The sample size was just too small to provide answers.  Double-blind and controlled, it still won't provide the answers we are looking for.  

*Many research studies on typically developing children and those on the autistic spectrum found that nutrient intake (vitamins/minerals, macronutrients) are similar DESPITE limited food selectivity found in children with ASD.  Some research indicates lower intakes of vit D, calcium, iron and fluoride in children on the spectrum.  Others didn't find a difference between the 2.  Keep in mind, these are children who ARE NOT FOLLOWING A SPECIAL DIET SUCH AS THE GF/CF diet.  From my perspective as a Dietitian, that research stands like a red flag to me.  What about the kids who are on a CF diet?  What about their vitamin D and calcium intakes considering any source of dairy is not allowed/tolerated?   Let's look at my son.  Aiden's primary source of fat, calcium, vitamin D, and protein comes from MILK and his vitamin D was LOW despite drinking 2-3 cups each day.  Something to think about and check for!

*Omega 3's--a review of the literature in the Journal of Herbal Medicine, 2015 suggests that "there is limited evidence supporting the use of omega-3 supplementation in clinical practice for the treatment of behavioural symptoms in children with ASD.  However, some studies do show potential for this treatment option in a limited range of behvioural outcomes.  Further studies are required."

From the same review of 6 studies: Omega 3 fats play a vital role in the functioning of the brain and central nervous system.  They make up part of the structure and function of cell membranes.  They are essential for brain growth and development and cognitive function.  An imbalance of omega 6 to omega 3 fats (I will add, this is the "typical" American diet) is associated with neurological and pscychiatric disorders as well as behavior abnormalities in adults and children.  1 study found that 1 gram (380 mg EPA and 180 mg DHA) supplemented in children (age 4-7) for 12 weeks saw improvement in test scores (33%), but the sample size was small.   Further studies have also been critized for their small sample size, low dose of Omega 3, and severity of autism diagnosis.  "Statistically non-significant improvement in hyperactivity and stereotypical behaviors."  "No clinical gains on behavior or developmental outcome measures."  "No significant improvements in autism symptom severity."  This is from 6 peer reviewed clinical, controlled studies/research over the years.    

*Here are MY conclusions based on 16 years in the field of nutrition + a son with ASD:

--Look at the child as an individual.  Does he/she have eczema, chronic constipation, diarrhea, bloating, stomach aches, headaches, symptoms that aren't medically explained?  If yes, get him/her tested for IgE allergies and for CELIAC disease.  If you have autoimmune disease in the family, testing for Celiac disease is a MUST.  The 2 are different tests (IgE and celiac testing)!  If things come back negative, and you still suspect an intolerance, find a local professional who specializes in food sensitivity testing.  He/she can help you navigate the ins and outs of meal planning and see what foods work best for YOUR child.

--If your child consistently misses entire food groups, doesn't tolerate or drink milk, and/or has a very limited selection of foods he/she will consume, get their vitamins/minerals checked.  Again, Aiden was a little low in vitamin D and iron DESPITE eating fortified cereal every morning (high in iron) and 2-3 cups of milk a day (a rare source of vitamin D).  This is a blood test and we had to do it twice :(.  I also had Aiden's protein level checked, which I expected to be normal given his intake of milk (24 grams protein daily) and nuts (7-14 grams daily).  It was :).  Remember, kids don't need as much protein as adults because they have less body weight, and protein calculations are based on weight.

--A daily multivitamin without iron is appropriate and safe for most kids.  High doses (>100% DV) can cause GI upset and diarrhea in some, so please read nutrition labels.  Avoid food dyes and processed soy, wheat, and corn in the vitamin you choose, especially if your child has food allergies/sensitivities.  If your child doesn't get adequate calcium, they will need to take a separate calcium supplement once or twice a day. If the vitamin/mineral intake blood testing is low, your doctor will prescribe higher doses of that vitamin/mineral supplement as needed.  Please don't do it on your own.  Again, high doses can cause GI upset and intolerance, and some are stored in the body and completely unnecessary--or harmful--to consume in high doses. 

--Although we all need carbohydrates, protein, fat, vitamins, minerals, and water, how we obtain them can very, very different for each of us.  Do some investigating, and figure out what is best for YOUR CHILD.  For my son, an unrestricted diet with a daily vitamin/mineral supplement + Omega 3's is what is best.  For yours, it may absolutely be a gluten free, lactose or casein free diet that is free of dyes and other food additives.  Keep in mind, the more restricted the intake, the LESS likely he/she is getting the vitamins/minerals they need.  If your child is growing adequately on the growth charts, it is likely they are getting adequate macronutrients/calories, but they may still be missing those vitamins/minerals that help our body function at its best :).

--If yous child is losing weight, fluctuating in weight, has chronic diarrhea/constipation/GI symptoms, it is time to see a professional.  Nutrition affects growth and development, and chronic, severe depletion may have lifelong consquences to health (like my former roommate who still has bone pain related to severe restrictive eating patterns that lead to depleted bone minerals).  



Thursday, January 26, 2017

Educational Autism

Mentally done.  Physically done.  Breathe Marian just breathe.

Here I am sitting around a table with 6 other women and trying desperately not to weep.  We are in a good place with Aiden.  We don't live and breathe autism anymore.  Yet today, as I heard the psychiatrist talk about Aiden's struggle to fit in during gym class as she observed him, I lost it all over again.  I was that kid who felt alone and awkward in school--like I didn't quite belong.   Today, Aiden was that kid.  Gratefully, a confident kiddo took Aiden and said, "Come on Aiden.  You can do this!"  Shouldn't we all be like that?  The person who makes everyone feel like someone that matters?  I wish I knew the kid and his parents.  Perhaps I do.  If names could be exchanged, I would be calling that mom asking to hug her son and tell him how much I appreciate him for what he did.  

So that is how the meeting started.  Aiden is struggling to fit in, he is struggling to learn how to read, he is struggling with math, he is struggling.  What do I do now???

Yesterday we officially said "goodbye" to three years of therapy.  The therapy I worked so very hard to get for Aiden.  Yet, it was the right direction.  Seasons change.  Needs change.  Life CHANGES.  This change was right for right now.  So, what is next?  Will a tutor help Aiden?  Will additional help in school make a difference?  That was the purpose of our meeting today.  What is next for Aiden?  What does he need in place to LEARN?  

The boys were with me today.  The meeting went long.  Avery pooped and started writing all over the place.  He was tired because he didn't get his nap.  I put too much on our "plate" today.  I was pretty tired myself.  I haven't been sleeping well.  So much change.  Ashton started to talk back.  Austin was rude.  Nothing got resolved at that meeting, and I walked away feeling defeated and lost.  

What good came from THAT?!  Wasn't Aiden supposed to get an "educational" diagnosis so he could receive more help at school?  Why in the world is that necessary when he has a medical diagnosis and document after document that says he has autism.  Teacher "speak" went over my head and I was lost.  Too tired to fight back.  Too overwhelmed with my kids behavior.  

Stick a fork in me I'm done.  For now.  This momma doesn't quit!  Tomorrow is a new day!  

Sunday, January 8, 2017

Transitions

2017 is another year of change, and I'm happily embracing it!

Abe and I fasted and prayed today about the next stage of our lives.  We've had a life changing event every single year of our marriage, and we knew this year was NOT going to be the exception.  We knew there were changes ahead, and we wanted some guidance.  Specifically, about our home.  

11 years later, we are going to sell our home.  It feels right.  After the challenging years we've faced, it feels like a healthy new chapter for us.  And change #2....

Due to our rising income, we are now obligated to pay a co-pay for Aiden's therapy.  Since discovering this, we have decided--after 4 years--to discontinue therapy sessions.  It was the right time.  Aiden's struggles continue to be academic and sensory, and I just don't feel like the hours Aiden spent in therapy were accomplishing the things we were hoping for anymore.  I'm so grateful for the first 3 years we had.  Aiden flourished quickly.  He learned to speak, communicate, and socialize through that program, and I'll never regret how hard we fought to get him the therapy in the first place.  It was worth it!  

So, we move on from after school hours and continue to work with the School District to help Aiden learn the best he can.  This month we have an appointment with the school psychologist to determine what is best for Aiden academically.  I pray that Aiden will get all the help he needs to be successful, to catch up on reading, and learn basic math.  

In the meantime, Aiden is starting to take more responsibility for helping out with his siblings, holding doors open for people on his own, and overall, being a genuinely super great kid!

I have faith as we move forward!  I'm actually really excited for what is to come!