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Can you intuit your illness?

Can you intuit your illness?


Exactly one year ago today early in the morning before it was even light, under doctor’s orders, I drove myself to the emergency room. I was sent there for a kidney biopsy. He said it was the fastest way to get the biopsy done, otherwise it would take weeks. The nephrologist told me that it was an easy procedure with just one-night stay. He did add as I started to leave the office that depending on what they found I may stay longer. 

I already had a gut feeling about the situation however. It’s the reason I took so many trips in the summer of 2019. I’ve always wanted to travel a lot, and here I was 47 and I hadn’t traveled hardly at all.  I was feeling well at that time. Or at least nothing more than some increasing joint pain that had been slowing ramping up the last three years or so. I just had this FEELING. My logical side kept telling me it was nothing, nothing but my imagination. However, I’ve learned to be mindful of my gut feelings because they have been too accurate over the years. I thought maybe a car crash was coming, or one of those ACME anvils was going to drop out of the sky on me. Lol 😉

Then in October it began, the swelling, then digestive issues. cholecystitis, my abdominal cavity was filling with fluid. After to a lot of medical bumbling I finally got where I needed to be, I guess, and that’s when I was told on the 24th of December to admit myself to the ER right after Christmas.

Once again, my gut was telling me I was going to be gone more than the 2-3 days. I paid the bills that were coming up, laundry, cleaned up the house, gas in the car, got my daughters ESA report done ahead of time, made sure Matt had access to my life insurance policy and had my passwords etc. Yeah, I wasn’t entirely sure I was coming home.

I was terrified in the hospital. I cried, A LOT. Hospitals don’t have Kleenex by the way so if you know someone there for a long stay do them a favor a bring a few boxes. The saddest part of it all is as much as I was fearful that I was going to die, and I’ve only told two people this, I also didn’t want to go back to my life. It wasn’t the people in my life, and I loved my work as a therapist, but it was just the grind, I think. The pressure, stress, worry, fear that I suffered with every day with all the challenges we’ve had. I felt like I had gotten lost somewhere.  Even now typing this I feel flush just emotionally re-living in my mind what that felt like. Frankly, it was pretty damn sad. At the same time, I hated being there, because anyone who’s been in a hospital for long knows, it sucks. I also missed just being home and I missed Matt and Samara and I was worried about funds as I’m the sole income earner.

I found myself in this weird state of existence, even after I came home. That’s the best way I can describe it.  It was kind of this surreal, floaty kind of place. Maybe it was my psyche trying to protect itself from stress. Maybe it was spiritual. I don’t have the answers. Even though my heart didn’t stop and I didn’t float into any white light, I consider this a near death experience. Its as close as I’d like to get for awhile too.

After three weeks in the hospital of daily dialysis with 9% kidney function , nephrotic syndrome, a diagnosis of MCD that has now changed to FSGS,more dialysis, lots of pills, an increase to 65% function and a new diagnosis in November of fibromyalgia and global joint pain, I’m still here. Obviously. 

It’s been a humbling experience in so many ways. It made me ask myself a lot of questions I still don’t have all the answers to.  I’ve learned a bit more about humanity.  The kindness, and generosity of others, and also the lack of compassion, from some. It’s left me with a new awareness. I still don’t know where I’m going, but I’m here and I’m still working to figure it all out as best I can. Its still hard to believe it has been a whole year. I think most everyone had a rough 2020 in one way or another and I hope that we all figure out how to have a better 2021. 😊

 My doctors still don’t know the cause of all of this. I have to wonder, if perhaps when a person is just ground down to nothing, it can cause major illness/disease to happen?  Or maybe taking on too much of others pain and sruggle? Was it to drive me onto another course in life entirely? Could I have done anything to prevent it? Science would say no, but I wonder. What do you think?

The Top 5 Reasons We Decided To Homeschool Our Autistic Child

The Top 5 Reasons We Decided To Homeschool Our Autistic Child

People choose to homeschool for many reasons. My husband Matt homeschooled his daughter (my neurotypical stepdaughter) and she was almost grown up and ready to leave home when we Samara was conceived. I didn’t know anything about homeschooling when I first came into their home but I could soon see the positive outcome for my stepdaughter.  So, naturally, we wanted to homeschool Samara as well. Some of the reasons we wanted to homeschool before she received her autism diagnosis at age 2 still stand, and there some additional advantages that we are including on this list.

1.) Morals, Values, and Safety

We aren’t a “religious” family, but this was a big one for myself. I hate to sound like an old person here but let’s face it, schools are not what they used to be. I grew up in the 70’s and 80’s and I didn’t even approve of some of the things I experienced in school. Sadly, bullying, violence, drugs, lockdowns, pedophiles, security guards and police are a reality in today’s schools.

2.) Anxiety, Sensory Issues, and Emotional Dysregulation

Children cannot learn if they are constantly in a state of fight or flight. As a kid, I spent almost all my school days struggling with anxiety. I had auditory processing issues and most of the time couldn’t understand what my teacher was saying to the class. WORDS WORDS WORDS, I could hear them, but not put it together to make sense of it. As a result, the teacher would call on me to answer a question and I just broke down into tears. This outburst, albeit too much for me to ever control, was ultimately humiliating. Too many visual and audial distractions and being forced to be still can be excruciating for some kids. At home, you have control over the environment, lighting, noise, or including the right kind of sensory input for your child. *Check out some of these cool additions for your homeschool.

3.) Socialization

Wait? What? Yes, she doesn’t go to school because I would like her to learn to socialize and schools do not teach children how to socialize. Schools teach children how to sit at desks, be still, and only speak when spoken to and follow orders. Then they turn them loose by themselves on a playground to explode with no adults to role model and expect them to treat each other kindly. At best there’s a playground monitor to escort your bloody nose to the nurse.

When you homeschool your children get the PH. D. of socialization. They have you, the parents, to role model how to treat one another, and maybe older siblings too. There often times are homeschool groups that have park days where your kids can go play with other homeschooled children every week. Many homeschool groups also have outings (field trips), co-ops, and library days. Older children learn to role model for younger children and so there is a lesson in watching out for others and learning to interact with all ages.

Since they aren’t at school all day they get to go out in the real world and learn to navigate daily social skills and appropriate behavior whether it’s at the grocery store, post office, library or the museum.

Now you may be wondering specifically about autism and social skills. Many parents worry about socialization for their autistic child because autism involves difficulties in communication and relationship building. Homeschooling is actually the most ideal situation for an autistic child for some big reasons.

  1.  They can learn the foundations of communication, like nonverbal communication, visual referencing, experience sharing, emotions, etc., from one on one interactions through play and activities with you at home. These are not taught in developmental preschool or elementary school and are needed before one can successfully have social interactions and friendships.
  2. You are available to provide a safety net and help guide them through interactions if necessary.
  3. They can have positive social interactions which will help them feel more confident. In my experience homeschooled children tend to be more aware, kind and understanding of others differences.

4.) Curriculum and Special Education

When you homeschool you can pick a style of curriculum that works for your child’s learning style, unlike the public school system which dictates what is used and its used for all the children regardless of learning styles. This also means you can tailor to your child’s natural interest which is a very important part of self-discovery and figuring their strengths and passions. How many of you graduated from high school still unsure of what those were? I know I did.

All children learn different things at different times and in different ways so you can meet your child where they are at, whether they are neurotypical, autistic, or have a learning disability. There are also many online resources if you need additional help with occupational therapy or speech strategies.

Best of all you have the freedom to be flexible when sickness strikes, anxiety days happen or its a beautiful day for a nature hike. FIELD TRIP!

5.) Learning is fun!

Yes, learning is fun. Learning is a lifelong process and it SHOULD be fun! At home, a child is free to explore areas of interest and learn in ways that are exciting to them. Whether its one of those cool monthly science boxes, exploring the backyard wildlife, reading,  or games and apps.

Are you homeschooling or planning on starting? I’d love to hear your top 5 reasons in the comments.

* This post contains affiliate links. If you click and make a purchase it is no additional cost to you, however, a small kickback is given to us so you help support the Guiding Autism Blog. Thank you.

Autism Diagnosis: 5 Things I Wish I Had Known

Everyone handles the day of diagnosis differently, shock, devastation, denial, grief,  blame, or relief. For myself getting that diagnosis gave me direction. I wanted to understand these changes in my child and how to help her. In the end, she has taught me more about myself than I ever bargained for, but that’s another story. On with the list.

  1. Early intervention is a double edge sword

When we get the diagnosis and the doctor tells us about the importance of early intervention for the best possible outcomes, it tends to create panic and your internal maternal clock starts ticking to a new time clock. Parents immediately go into crisis mode, if they weren’t already from dealing with confusing behaviors. We throw our child into many hours of therapy. Our role as parents is transformed into the role of advocate and we run our child to this therapy and that therapy, day after day, after day.

Now I want to note here that depending on where you live this may be variable. I Live in Arizona and they have a program here specifically for autism that was intended for children who were at high risk to be institutionalized. Our daughter was diagnosed with level 3 autism and because of this, she was eligible for 40 hours a week of in-home ABA therapy, 1 hour a week of music therapy, 1 hour of speech, and 1 hour of occupational therapy. They are also able to get behavioral health services if necessary. Many children are able to increase speech and occupational therapy hours based on need. Now before you pack your bags, close that tab on “the best places to live in Arizona” and think about this further.

This is where it gets interesting and I want you to really think about this one. Autism is a communication disorder. Children can have difficulty with speech as well as social interactions and relationship building. Who do children typically bond with, model from, and learn speech, social and relational skills from? Parents. I was spending 50 hours a week at work, and my child was spending another 45 hours in therapy. Even if one parent can stay home full time this is 45 hours your child spends away from you and away from learning those skills.

Now you may think, but the therapy is what will help my child. I can’t possibly help my child. I’m not trained like the professionals. That brings us to number 2 and 3.

  2. Professionals don’t know what’s best for your child.

Compared to the general public, professionals are the second most knowledgable when it comes to autism. However, there is only one person that knows what’s best for your child. It’s YOU. Yes, YOU.

I know you didn’t go to college and read textbooks about this stuff. Regardless,  you don’t need a Ph.D. or a Masters to know what’s best for your child. I know its hard to believe in the early years when every day may feel like you’re walking on eggshells and you feel like every inborn or learned resource you had about parenting is failing. We aren’t even going to discuss what your relatives think here cuz that’s a different conversation entirely.

There will come a moment, probably after you start therapy, that your gut will kick in and tell you what’s right. When someone holds your child down to stop them from stimming perhaps. Or when you see them getting more agitated and anxious when one flashcard becomes one too many flashcards. When they take away their “positive reinforcer”, usually a favorite item, to withhold in exchange for behavior modification. You’ll know. Follow your gut.

Wait, professionals are the SECOND most knowledgeable? Yes. Who’s the first most knowledgable about autism then? AUTISTICS! I highly encourage you to join a group that accepts parents looking to learn more about neurodiversity. Here are a couple on Facebook that I recommend.

3. Even more than therapy, she needs you.

If I had it to do over I would go back and skip that 40 hours a week of aba.

Now I don’t want to negate the importance of getting help altogether. You most likely do need guidance.

  • I would have asked more questions to the SLP about the “why” behind speech therapy.
  • I would have asked the occupational therapist more specific questions about how to help my child at home.
  • I would have spent a great deal more time in actually autistic groups
  • I would have sought out an intervention that focuses on helping my child communicate beyond scripts, focuses on relationships, thinking independently, regulating emotions and includes me as a part of the process.

*Here are some recommendations:


DIR: Floortime

If these aren’t possible, or for additional learning:

The RDI Book :


I Love You Rituals:

Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think by Stanley Greenspan

4. Don’t worry about the milestones.

Your child is on their own trajectory of growth. Think about when you were a kid in school. Remember the kid who was so smart? Maybe that was you? 😉 The kid that was always in trouble? The kid that was always struggling and couldn’t keep up?

Chances are the trouble maker was bored to death. The kid doing well just happened to be on a typical trajectory for his grade and age. The child that was struggling wasn’t struggling because he’s not smart. He was just learning different things on a trajectory that was different from what the educational system had planned for him. Yes, even neurotypical children learn different things at different ages. Our schools and doctors have these milestones that kids are supposed to fit into but guess what? It’s not set in stone. Every child is unique and your child is no different. Your child is capable of learning and growing in every way.

Don’t compare your children to milestones, other children, grade levels etc. If you’re still on the email list of milestones do yourself a favor and unsubscribe. Someday you may want to return there when things feel calmer, but for now, you just need to focus on your child and meet them where they are at. Keep working on what they need help with. Don’t forget to stop and smell the roses along the way. Enjoy every moment. Don’t miss their childhood worrying about what tomorrow may or may not bring. Save tears for tragedies, this is not one of them.

5. Not all of what you see is autism.

I think this one is really important too. Its taken me a great deal of time to sort this out.

Comorbid conditions are common amongst autistics and can include:

  • Gastrointestinal disorders
  • Sensory problems
  • Seizures and epilepsy
  • Intellectual disability
  • ADHD
  • Obsessive-compulsive disorder
  • Tourette syndrome
  • General anxiety disorder
  • Clinical depression
  • Anxiety
  • Auditory Processing Disorder
  • Apraxia

I have a really good resource for this one as well. Another blogger that goes by Autistic Mama. She is an actually autistic mom raising her neurotypical and neurodiverse children.  I highly recommend signing up for her newsletters.

Along with the fact that comorbid conditions can create confusion about what autism IS, what you also see in your child is simply your child. Their personality, their joy, frustrations, interests, all them. They are a whole person, just like anyone else.

I hope that you found this blog post helpful and insightful. If you’ve been on this journey awhile what were your top 5 things you wish you knew when your child was diagnosed? If your child is recently diagnosed what one thing did you take away from this article?


* This post contains affiliate links. If you click and make a purchase it is no additional cost to you, however, a small kickback is given to us so you help support the Guiding Autism Blog. Thank you. 


The Parental Role In Autism

The Parental Role In Autism

When you bring home that newborn baby it can be so joyful and so overwhelming. People jest about not having an instruction manual for their new bundle of joy, yet they manage. They use their own experience as a human being on the planet, combined with their parent’s techniques from their own upbringing (some good, some bad) and cobble together their own style of parenting. It’s never perfect.

When you have a child with autism, however, all those things you know about taking care of a child no longer seem to fit. You can feel lost, helpless and alone. However, when you get the diagnosis there are people to help. They all come to your aid, the doctors, the many therapists, the teachers. They all know what to do. You sit back watching them “work” with your child. They all mean well. Your family life is a whirlwind of rushing them to therapy, maybe to school, another therapy, and back home to another therapy. You kiss them goodnight and it starts all over the next day.

Samara was in 45 hours of therapy from age three to age six. That’s more than a typical adult’s work week. Where did I, her mother, fit into all that? I watched and I learned, as best I could from a distance. Most therapists would actually prefer you’re not even there for sessions, but I wouldn’t leave her alone.

You lose your parent-child relationship and your role becomes that of the advocate. Advocate and child, does that sound right to you? Your job is not to teach your children anymore, its to make sure they get to all the therapy they need whilst avoiding any collateral damage.

I feel that there is something severely wrong with the way we are approaching “treating” children with autism. Children with autism need one thing, their parents. Parents need one thing, guidance. Guidance on how to navigate a child that’s mind works differently from theirs. They need to be able to resume their typical role as a parent to their child. The child needs to feel safe, loved, and nurtured like any child.

I had a support coordinator from DDD tell me once that we didn’t need any habilitation hours for Samara because “habilitation is for parents who have given up on their children, and you’re clearly capable of teaching her things.” At the time it made me very angry. However maybe, in a way, she was right.

Lately, I find myself in a predicament. Through the RDI program this past year I have learned to connect with Samara in a way I  hadn’t been able to before. I AM a good guide and teacher for her. As a homeschooler I have always valued the idea that Samara will be free to learn and grow at her own pace, not by someone’s pre-determined timeline. That she will not be burdened or pressured, or bullied. That she will be allowed to maintain her passion, her spark, to learn.

I find, however, that another bully is still present, THERAPY. I find myself highly resentful of the “help” that we felt so privileged to receive back when she was only 2 and newly diagnosed, feeling helpless to help her. Although we have abandoned ABA therapy she is still going to occupational and speech therapy. Here she is put back on an expected timeline of development. No longer really free to develop at her own pace. She is made to do tasks whether she is developmentally ready or not and it breaks my heart. This is not what I want for her.

However, when you have a child with special needs and someone puts “medically necessary” on anything, you are required to follow through for fear of being accused of not giving your child what they need. The fact that you continue to work on these skills with your child yourself doesn’t seem to count.

In fact, when I had a discussion with an agency recently about RDI, she balked at me about RDI “just being a parent lead program”. As if parents aren’t capable or the best teachers for their children. I think its time we put our kids with ASD back into the most capable hands to help them, or at least for those willing to take on that challenge, with their parents.

I would love to know how you feel about your relationship with your role as a parent with your autistic child. Do you feel therapy is helping or hindering fostering your relationship and connection?

Diagnosis Autism

Diagnosis Autism


I’m looking across the dinner table at my now 6 year old daughter navigating two IPads while eating. Most parents are amazed at how the time flies by with their little ones.  I am most amazed at how much she has taught me. At age 40 I had this little girl and went through all the normal transitions of going from a life where you do whatever you want, whenever you want, to one dictated by late nights, crying (both me and the baby), and feedings. Six months into our transition our lives changed, her life changed, and our “normal” was changed forever.

On the day of her 6 month vaccinations we landed in the ER with 108 fever and seizure activity. The doctor says “Let me guess…they gave her a whole bunch of vaccines at once? We see this every day.” That part of our conversation made it seem like what was happening to her was routine, however after the fever subsided they were very concerned that she “was acting herself” before they let us go home. It’s harder than you would think to determine this at 6 months of age. She was lethargic, which they said was normal after seizures, and she went through several hours of absence seizures. We were sent home.

After we were sent home we noticed changes our little girl. She had been holding her own bottle since she was a few weeks old and had recently started self feeding with a spoon. Now she seemed to have an aversion to using her hands for anything. She used her fists to hold a bottle. She no longer used a rattle. She was no longer able to use the spoon. She was also very “spacey” which we learned was more seizure activity. She started making growling noises. The baby babbling that we associate with a baby’s attempt at talking stopped. We lost eye contact. She was obsessed with anything colorful and\or spinning. She could play with the twang of the spring door stoppers forever. The only way to calm her was through colorful animation and music. We were scheduled with neurology at Barrow Neurological Institute at Phoenix Children’s Hospital. They had a three month wait list to be seen. During that time I continued to research on my own what was possibly causing seizures and this behavior.

During that three months I started researching her symptoms. What was causing her seizures?  I had read that soy could cause seizures and she had suffered a lot of gastrointestinal distress from the day she was born and had been put on soy formula early on. She couldn’t even tolerate breast milk. I decided to discontinue soy a couple weeks prior to see the neurologist and during that time we saw no more seizure activity.

The day of the neurology appointment the doctor assessed her and ordered an MRI. She said she sees this a lot with the DTAP vaccine and she believe this was what caused her reaction. She said not to vaccinate again with DTAP. She told us that some of her patients that experience this get better and some go on to receive and autism diagnosis, epilepsy diagnosis or both. Since we had seen a decrease in seizure activity she said she hoped Samara’s brain would continue to heal and she would be fine, but only time would tell.

Samara did not get better. In fact shortly after we saw the neurologist the stimming began. She would sit in her jumper and lift her legs , with her muscles contracted, up and down over and over until her face was red and she was sweating. She would do that same thing on her back, doing straight legged leg lifts, and scrunching up her face. This was not seizure activity as she was aware and you could tickle her and it would stop for a second. We had contacted early intervention, which frankly wasn’t much help. They did do an assessment which was just a lot of questions, that lead to an “at risk for autism” result that we could take to our pediatrician. There was a 6 month wait list to see a developmental pediatrician. Samara was diagnosed with “classic autism”, the most severe form of autism, in January of 2013 at age 2.

This is a very abbreviated version of our diagnosis journey. The amount of uncertainty, our own and the doctors, and friends and the information we consumed during this time is dizzying. It was like she was born, and then she had autism. Everything in those two years in between was such a whirlwind.

During the following years up until today she has received 45 hours a week of therapies. We have spent thousands, most of which we did not have, to care for her and help her heal. We have and still are searching for the best interventions and biomedical treatment for her and she has made great improvements. We have not had any evaluations to tell us where she is on the spectrum since that original diagnosis, nor do I want to pursue that. I just keep looking forward.

Daily Life

Samara wakes up very happy. More happy than anyone I have ever seen honestly. She chatters away holding her hand in just the right position by the side of her face just catching her peripheral vision. I don’t understand everything she says but I pickup some words here and there. When she is done she moans with a big grin on her face and I say good morning. We have been working on greetings for awhile and she now has “good morning” down pat, when she’s ready.

After she gets up every morning we give her supplements. She takes a topical methylcobalamin which helps her focus. Without this her stimming (self stimulatory behavior) goes from a part time job to a full time job. It could take her several minutes to get a across a room because she’s too busy with hand gestures and vocalizations. She gets a liquid vitamin supplement called Restore which is for digestive health, leaky gut syndrome.  Without Restore she has problems with constipation and she will also lose her ability to speak. Our newest supplement is NanoVite which increases glutathione, decreases inflammation and acts as a liver detox. Her receptive language has improved considerably with this. She just recently started tolerating a shower instead of bath which makes the daily routine so much smoother. After her shower we work on dressing which has just recently mastered. “Find the big hole” was our most recent success on helping her understand where her head was supposed to go and she can finally manipulate the shirt somewhat to get it on without too much assistance.

During the day she spends a lot of time with academic apps on her Ipad. We work on more structured activities as well that focus mostly on life skills. We  have spent a great deal of the years taking her out into her world, stores, parks, the zoo, restaurants, traveling to another city, staying in a hotel. This was good, bad and ugly at times and still unpredictable to this day.


She had suffered some regression in speech in 2015, but has been slowly recovering. You cannot communicate, as in a back and forth conversation with her, but she can label things, ask for help, point to things she needs. She has had an improvement in receptive language, or she is getting really good at guessing, its hard to say for sure.  She has added some sentences to her repertoire this year which we are very excited about. She has greatly increased in eye contact which was recovered naturally. We did not do a forced eye contact through therapy. We don’t believe in forced eye contact, or teaching scripted answers for “social skills”, or stopping her stims. If these things change it will be of her own natural growth and progression. The chewing that people seeing during the teething months just never stopped for her after teething and she would chew holes in her clothes, but that has also subsided with biomedical intervention.  She is fully potty trained as of two months ago. She still has vocal stims, mostly from excitement/visual over stimulation. Her meltdowns have subsided to tantrums. She has regained the use of her hands although she is still struggling with fine motor in this area.

She started RDI therapy in April this year and that has been the best thing ever for our entire family as we have exited the state’s funded intensive ABA program. We homeschool and she still goes to speech, occupational therapy and music therapy. We are finally taking back control of our lives and being a family again, connecting, growing and at times it’s almost like we are meeting each other for the first time. 🙂 It’s a beautiful thing.