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Anesthesia and Sedation Options for Kids with Autism

Anesthesia and Sedation Options for Kids with Autism

Anesthesia and Sedation Options for Kids with Autism

Does your child with ASD need sedation for a dental or surgical procedure? Wondering what your options are? Anesthesia and sedation choices need to be carefully considered for a child with complex medical needs.

Why Is This So Important?

Many of our kids have genetic mutations which affect their ability to detoxify. Kids with a high toxic load can struggle with the extra burden of anesthetics. Many kids also have reduced mitochondrial and/or autonomic nervous system functions which are further hindered by anesthetics. These underlying issues are often misunderstood by mainstream doctors and dentists. So, our job as educated advocates becomes even more critical.
 
When Bear needed sedation for some extensive dental procedures Lily immediately started researching. She connected with another mom who is a pediatric anesthetist nurse and has a kiddo on the spectrum. This sweet mom agreed that we could share the safety guidelines and information she recommended for Lily’s situation.
 
This is not medical advice. But, it can help you understand some of the most common medicines used, pros and cons, and some other safety and comfort considerations. Keep these in mind to discuss with your provider and your anesthesiologist.
 
This blog is a companion to our YouTube video, Anesthesia and Sedation Options for Kids with Autism. Lily covers some additional tips and shares the story of Bear’s regression after sedation. She also covers how she was able to get him back on track. Be sure to check it out!
 
These are six things often used during sedation or anesthesia for children. It’s helpful to have an understanding of these if you are facing a medical or dental procedure for your child.

Nitrous Oxide

If you have been to the dentist, you have likely had nitrous oxide. It’s the “laughing gas” that makes you feel strange and reduces your anxiety about the procedure. Lily always hated it as a child and didn’t feel good for a day or two afterward.
 
Nitrous Oxide is one of the oldest drugs used for sedation. It’s cheap for providers to use which is part of why it’s so popular. For most people, the only side effects are occasional nausea or constipation. However, many children with ASD have methylation cycle defects including MTHFR. Nitrous Oxide depletes the b12/folate cycle and methionine synthase. This depletion causes a chain reaction in the body that can increase inflammation and oxidative stress. Children with methylation cycle defects are more susceptible to these negative effects. Repeated Nitrous Oxide exposure can even be fatal for a small subset of kids who go into a procedure with a severe methionine depletion.

 

Sevoflurane

Sevoflurane is a gas often used as an alternative to Nitrous Oxide. Only about 2-5% of it is metabolized. This means that instead of being processed by the liver, the majority of it is exhaled back out through the lungs. This happens within minutes of the gas flow stopping.  The speedy reversal minimizes the effects on mitochondrial function.
 
Lily’s guidance was to make sure the anesthesiologist knew she didn’t want any Nitrous Oxide mixed in with the Sevoflurane. It is a common practice because they are more effective together for non-sensitive patients.
 
The gas does have a pretty yucky smell. However, they often can put a gel that smells good inside the edge of the mask to make it more tolerable.

 

Versed

This drug is often given orally or intranasally right before surgery. It’s generally considered safe because it’s easily metabolized and has a short-acting time. Versed also has an amnesia effect. That means the child doesn’t remember or feel traumatized by the anesthesia or the procedure.
 
Lily allowed this with Bear before his sedation for his dental work. He became very relaxed and groggy which made it much easier to put him under with the sevoflurane. She allowed it again in the ER a couple of years later so he could get some stitches after a fall. It worked beautifully. They were able to get his stitches done without trauma or tears.

Propofol

The delivery for propofol is intravenous. Its function is to induce and maintain general anesthesia and a safe airway. Please note that it contains soy and egg phospholipids. If your child has an allergy or sensitivity to either of those be sure to let your provider know. It may exacerbate mitochondrial issues when used for longer periods. However, our nurse stated that a small bolus is okay for children over 65-70 pounds.

Definitely discuss any concerns with your provider and anesthesiologist. For more detailed information please see our link below for “When Propofol is Problematic”.

 

Ketamine

Ketamine is given orally, intravenously, or intramuscularly via injection. Some providers prefer it because it doesn’t affect breathing like some other drugs. Unfortunately, it’s hallucinogenic and dissociative properties can make its use for children questionable. These effects are particularly troubling for non-verbal children or those with a cognitive delay. They can’t express how they feel, understand what’s happening, or have help to process the experience afterward.
 
Ketamine has a higher incidence of postoperative delirium. This is a serious complication. The patient experiences confusion, agitation, and may not recognize family members. We don’t feel comfortable using it for our small kiddos, but we know parents who have had to use it with aggressive teens. Be sure to research it fully and ask a lot of questions if it’s suggested by your provider.
 
Some feel Ketamine is the most reliable preoperative sedative for kids with ASD. It is used if a child’s symptoms are more severe, if they are teens, or if they become physically aggressive and resistant to other methods. There are some studies using Ketamine as a behavioral treatment for adults with ASD, but there needs to be more research.

Precedex

Precedex, also called Dexmedetomidine, is an intravenous drug for sedation. It is not approved for use in children in any country according to the article linked in the resources below. It is often used off-label anyway. Studies of its potential negative effects in children are limited and sometimes conflicting. Precedex is sometimes associated with low heart rates and unsafe blood pressure changes. In recovery, patients may experience and pain, shivering, and agitation. Lily decided to avoid this one with Bear for the reasons listed above. We encourage you to do your research before you speak with your anesthesiologist. Understand the risks so you can ask good questions.

Lactated Ringers

Sometimes called ringers lactate. This is a mixture of sodium chloride, sodium lactate, potassium chloride, and calcium chloride in water. It’s given through the IV during surgical procedures to help replace electrolytes. Kids with mitochondrial issues are at risk for lactic acidosis. Lactated ringers in the IV make this condition worse or more likely.

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Can I Help Cure My Child’s Speech Delay?

Can I Help Cure My Child’s Speech Delay?

Can I Help Cure My Child’s Speech Delay?

Speech delays can be one of the most difficult symptoms families struggle with. Some of our most heartbreaking moments as moms have been when our little guys were clearly hurting or upset but couldn’t tell us what was wrong. Things other parents take for granted like knowing your child’s favorite color or even get annoyed by like endless questions or something as simple as “mommy” or “I love you” are things we wish or pray for daily.

 

Lily’s son was non-verbal when he was diagnosed at 18 months. Even after a year of speech therapy, he had made no progress. It wasn’t until she started supporting his body systems with nutrients and making diet and environmental changes that he started speaking.

This blog is a companion to our YouTube video Autism Treatments: Can I Cure My Child’s Speech Delay. Be sure to check it out!

These are seven things that have made the biggest difference in our journey to help our children find their voices:

Methylcobalamin (MB12)

Methylcobalamin is not just a B12 supplement, it’s a methyl donor. That means it helps to “turn the wheels” in the body’s methylation cycle. For more on that check out our video. The majority of children respond well. Most notice increasing speech gains with continued supplementation. Many parents list methylb12 (methylcobalamin) as one of the heavy hitters in increasing speech and language. We strongly recommend reading the resources and writings by Dr. James Neubrander. He has several if you’re interested in reading more about this topic.

 

Diet Changes

There are conflicting studies on whether or not diet changes can affect autism symptoms. The ones which don’t find a correlation are typically shorter studies. Studies which show positive correlation are longer, like a year. This makes sense! Gut changes, healing, and uncovering inflammatory foods can take time, especially in our kids.

Removing dairy and gluten help many kids. Limiting or removing processed foods is a good idea for anyone seeking health. There are numerous diets available. Knowing which one to choose, where to begin or how to proceed can be overwhelming. In our experience and from our research, about 80% of kids improve with diet changes. Our first course, Heal With Food, covers this in-depth and gives our members the tools and support they need to be successful.

Home Detox

There is research to suggest that a large percentage of children on the spectrum have dysfunctional detoxification processes. When that system isn’t functioning very well it gets very easily overburdened. Removing as many environmental toxins as possible can help. We recommend the app Think Dirty. It can help parents determine which home products have the fewest toxins. When they know, they can make healthier choices. The fewer toxins a child is exposed to at home the better.

Heavy Metal Detox

Many parents see improvements when they carefully and slowly support the detoxification system. There are many suggestions out there for detox, but not all of them are safe or effective. Be sure to work with an experienced provider and do your own research before starting a detox protocol.

After doing months of research, we chose Andy Cutler’s protocol for our own kids. We talk about our experience and provide information and resources within our private community. There is also other information available online.

Feeding the Brain

As we discussed in our YouTube video, many kids have motor planning difficulties that make speech difficult. Speech production requires the brain to be able to send information to the muscles responsible for speech. This is called motor planning. One thing that supports the brain’s motor planning capabilities is healthy fats. We go into more detail about how this works in our video.

Our own kids and many others have benefited significantly from this protocol. When something works you want to share it with as many parents as possible! We strongly recommend Kelly Dorfman’s book Cure Your Child with Food for the details of her protocol. She provides a ton of other useful information for improving the health of your child.

Addressing Immune Issues

When a child’s immune system isn’t functioning properly due to leaky gut, a heavy viral load, coinfections like Lyme disease, or PANS or PANDAS the brain struggles too. The inflammation in the body can also be in the brain. Symptoms can be overwhelming. This subset of kids on the spectrum have a number of unique challenges. When immune system inflammation is treated and controlled these difficult symptoms can resolve. Alexis noticed that once she and her provider started treating her son’s PANDAS that his speech took off.

Traditional Therapies

Speech and occupational therapies, as well as behavioral therapies like Applied Behavioral Analysis (ABA) and RDI/Floortime, can certainly help your child increase their speech capabilities. However, what we found is that our children weren’t making much progress with traditional therapies until we supported their bodies. Once we addressed the medical/nutritional issues their progress and development increased dramatically.

Starting speech therapy, and occupational therapy if indicated, as early as possible is key for kids on the spectrum. If you aren’t seeing much progress it may be because the body needs additional support. We hope this information gives you a starting point for helping them move forward!

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Camel Milk Benefits

Camel Milk Benefits

Camel Milk Benefits

If you’re in the autism biomed community, you have probably heard other parents raving about camel milk.  It has been beneficial for many kids and helped reduce some of their symptoms of autism.  Sounds interesting, right?

Camel milk is substantially different than cow’s milk.  It’s actually much closer in composition to human breast milk. Both camel milk and breast milk do not contain lactoglobulins, which is the most allergenic part of cow’s milk. So if someone has a cow milk allergy they can generally tolerate camel milk.

Camel milk is still considered dairy but does not contain the A1 casein as most cow’s milk.  Casein is a protein that causes problems for some kids on the spectrum. Some people say camel milk tastes a lot like cow’s milk, but slightly saltier. It also won’t curdle.

But what are the benefits to camel milk for kiddos on the spectrum? Let’s dive into what makes it great:

Immune System Booster

The protein and fat content of camel milk and breast milk are similar and both contain high amounts of immunoglobulins.  Interestingly, though, camel’s milk has substantially more antibodies than human breast milk. A study in 2009, called Are camel milk proteins convenient to the nutrition of cow milk allergic children? by El-Agamy EI, Nawar M, Shamsia SM, Awada S and Haenlein, determined the antimicrobial factors of both camel and human milk and concluded that camel milk is richer in Immunoglobulin (1.54 mg/ml) than human breast milk (1.14mg/ml).

 

Nutrient Rich

Camel milk is rich in vitamins. It contains three times the vitamin C of cow milk and more Vitamin A, B vitamins, and protein. Camel milk also has higher levels of important minerals including iron, zinc, potassium, copper, sodium, and magnesium. It also contains essential fatty acids like Omega 3s! For kids on the spectrum who are often not getting the daily nutrients they need or who can’t tolerate cow dairy, camel milk packs a huge punch.

Low Incidence of Allergies

A study showed that camel milk can be used as a new protein source for those with food allergies. The study revealed that “when applying camel’s milk protein–specific antisera in immunoblotting analysis, there was no immunologic cross-reactivity between camel and cow’s milk proteins.”  That means that kids who love milk but aren’t able to drink it now have a suitable substitute! You can read one study here.  There are many more online you can find with a quick search.

Antioxidant Superstar

A recent study was done to evaluate the effect of camel milk consumption on oxidative stress biomarkers in autistic children, by measuring the plasma levels of glutathione and two crucial enzymes before and 2 weeks after camel milk consumption.  All measured parameters exhibited significant increase after camel milk consumption. These findings suggest that camel milk could play an important role in decreasing oxidative stress by alteration of antioxidant enzymes and nonenzymatic antioxidant molecules levels. WHOA! 

Helps Balance Glucose and Insulin

Camel milk has been used for people who are managing their diabetes with diet.  It helps control the “good” cholesterol, HDL. This is also beneficial for children who are affected by swings in blood sugar, as it helps control glucose with its insulin-like properties. Check out this study for more if you’re interested. 

Antiviral, Antifungal, and Antimicrobial

Many parents use camel milk to help fight and control yeast overgrowth (and the behaviors that come with it including hyperactivity, drunken-like giggling, irritability and defiance, and more). These parents don’t just try it, they swear by it.

Those anecdotal reports are backed by science.  Check out this study which states: 

“Camel milk has the ability to inhibit the growth of pathogens not only because it contains more nutrients compared to cow milk, but because it also has therapeutic and antimicrobial agents (El-Ziney and Al-Turkiy, 2007).”

What Parents Say About Camel Milk

In addition to the benefits listed here, parents of kids on the spectrum have reported that their kids are experiencing:

  • more restful sleep
  • improved expressive language skills
  • increased motor planning abilities
  • improved spatial awareness
  • better eye contact
  • resolution of skin disorders like eczema
  • fewer gastrointestinal problems like constipation and diarrhea.

Maybe it’s time to consider adding camel milk to your child’s diet? 

Okay, But Where the Heck Can I Find Camel Milk??

There are many people who use Google to find camel dairies that are local to them because the FDA has made it illegal to ship raw milk across state lines. There are also companies online who ship pasteurized milk. Our favorite is Camel Milk CooperativeWe got the chance to talk to Conner Heering from Camel Milk Co-Op on our podcast and he shared so much great information about camel milk and how it’s made and about a product unique to them that ships worldwide, freeze-dried raw camel milk! He also gets into the pasteurized vs raw debate and explains the flash pasteurization process they use to keep the milk safe while maintaining it’s nutritional benefits.

Click here to listen to the full episode! 

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Is It Autism? 19 Early Signs

Is It Autism? 19 Early Signs

Is It Autism? 19 Early Signs

It can be really scary when you start feeling like something is off with your child. We get a lot of visitors to our site whose child doesn’t yet have a diagnosis. We can’t diagnose your child and neither can you, but we can share some red flags that parents often notice before a diagnosis is made.

Keep in mind that one or two of these (except regression) does not necessarily mean your child needs to be evaluated. The more of these you feel apply to your child, the more sense it makes to get your child evaluated sooner than later. Don’t wait just because you are afraid someone might confirm what you are feeling in your gut. The sooner you know, the sooner your child can get services. This is important because early intervention has been linked to better outcomes.

We are also going to list some of the first steps other parents have taken to help improve the symptoms and behaviors of their kids on the spectrum and some common sense things you can do right away too.

 

Regression

This is a big one. If your child was meeting developmental milestones and is suddenly losing skills, (especially if it’s right after a specific illness, injury, or event) that is a red flag. Many children lose speech, see a decline in motor skills (can’t feed themselves anymore, can’t walk after being able to), and lose social skills. Within just weeks of getting my amalgam fillings removed while I was still breastfeeding, Bear stopped saying words and stopped making eye contact. It’s like he was in a fog.

 

Not Responding to Their Name

This was something we noticed with Bear and with our youngest, Bodhi. They stopped turning toward us or acknowledging when we called their name. When it happened with Bear, I initially was afraid he might have lost his hearing. We got his hearing tested right away and his tests were all normal. If your child has ear infections all the time this can also affect hearing. Be sure to raise any concerns with your doctor.

Posturing

Does your child lean over things like the arm of the couch or a yoga ball to put pressure on their stomach or contort themselves into strange positions? This is commonly due to constipation and they are trying to find relief with pressure or through contortion. It’s even more likely this is a sign of discomfort if your child is not having normal bowel movements twice daily.

Tip Toeing or Toe Walking

This can be a sensory issue or another sign of constipation. In some children, it’s a structural issue unrelated to autism.

W Sitting

This is when your child sits on their bottom with their legs out to the sides and their feet on either side of their bum, from above they make a “w” shape. Not always, but this can be a sign of low muscle tone in the torso.

If your child is constantly sitting like this or seems tired after sitting cross-legged even for short periods it’s definitely something to keep an eye on. If this is accompanied by difficulty “crossing the midline”, passing an object from one hand to the other or moving an arm or hand across the body, it should probably be evaluated sooner than later.

Check out this fantastic article by Lemon Lime Adventures for an in-depth explanation.

Speech Delay

Not babbling or using other meaningful gestures (waving, pointing, baby sign language) by 12 months. Doesn’t use one-word communication by 16 months. Doesn’t use two-word communication by 24 months.

Sleep Problems

This can be trouble falling asleep or waking up in the middle of the night for more than 20 minutes. For two years Bear was waking up EVERY night for 2-4 hours.  If you can relate or think your child may have issues with healthy sleep please check out our 2 part podcast series on Sleep and Autism.

Extreme Picky Eating

Bear started refusing foods, even ones he used to love. He would try anything when he was a baby and was a great eater, but after his regression around 15 months, he would scream, physically push foods away, and even gag or vomit when we tried to feed him.

Dairy and/or Carb Addiction

At one point, Bear was drinking over a gallon of organic milk a day. I told myself it was okay because milk was good for him and at least he was getting a lot of nutrients to make up for what he wasn’t eating, right? What I found out is that milk has a protein called casein and it has peptides that may act as an opioid. They are called casomorphins. Gluten has a similar issue for some.

Research isn’t conclusive, but it’s worth looking into. Here’s one of many studies: https://www.ncbi.nlm.nih.gov/pubmed/24657283/.

At one point, Bear was drinking over a gallon of organic milk a day. I told myself it was okay because milk was good for him and at least he was getting a lot of nutrients to make up for what he wasn’t eating, right?

The carb addiction, you know, the one where they only want to eat fruit or goldfish crackers, can also be a sign of imbalances in gut bacteria and in neurotransmitter levels.

Abnormal Elimination

Chronic constipation, chronic diarrhea, or going back and forth between the two are signs of a damaged gut. Same goes for poop that constantly has a ton of mucus in it. “Fluffy” looking poop can signal a fungal imbalance in the intestines. Gut health affects almost everything so please don’t ignore this sign!!

Excessive running, climbing, spinning

 Our kids both started running endless circles around the kitchen island, running across furniture, climbing on everything. All kids run and play, but for our kids these running and climbing behaviors became repetitive and almost obsessive.

Sensory seeking

This can look like spinning, crashing into things, jumping in place, pushing heavy objects, and more. Their body doesn’t seem to report its position in space or the pressure it’s received accurately to the brain. Swinging and jumping can help organize and regulate the brain.

Sensory defensiveness

Very hard time with noises, certain tastes or textures, will only wear certain fabrics, clothing tags and socks can be difficult to bear, not wanting to be touched, and more. Children can be seekers, avoiders or both by seeking input from one sense and avoiding it from another (loves jumping or swinging but doesn’t like to be touched).

Difficulty with transitions

Lots of kids don’t want to stop doing a preferred activity and might even fuss a bit to protest. Kids on the spectrum might have a total meltdown or struggle with every single transition. Change feels scary and sensory and social difficulties make it even more stressful.

Obsessive or repetitive behaviors

Lining up toys, flipping light switches on and off, opening and closing doors, flicking the springy thing that keeps the doorknob from hitting the wall, constantly wanting to touch the scar on my hand because it comforted him, obsessively pinching the loose skin on my elbow or between my finger and thumb, picking at his nails when he was anxious, stuff like that.

Odd vision related behaviors

Wiggling or moving the hands or fingers in front of the eyes. Looking out the side of the eye at a toy repeatedly.

Easily fatigued

Laying down a lot or getting tired easily shouldn’t be a child’s “normal”. A large percentage of kids on the spectrum have mitochondrial malfunction that can cause this and other symptoms.

Always sick or never sick

Never sick might sound like a good thing, but it can be a sign that the immune system isn’t functioning appropriately. Fever and the occasional cold symptoms are actually signs that the immune system is working to protect the body. Always sick may also be a sign of a weakened immune system.

Not sharing or showing

“Look, momma!” When your child isn’t bringing you things to share with you or show you it can be a sign that they are struggling with what’s called “joint attention”. It’s a social and developmental deficit that is a common red flag for autism.

Never sick might sound like a good thing, but it can be a sign that the immune system isn’t functioning appropriately.

This is not an exhaustive list and if you see one or two of these things that doesn’t mean your child will get a diagnosis. Early intervention is critical. Trust your gut. If you think something is wrong, don’t wait. If your pediatrician brushes you off and you still feel uneasy it’s okay to take action.

 

So what are some things you can do?

 

Schedule an evaluation and start services (if indicated) ASAP.

Your pediatrician should have information about Early Intervention services in your area or be able to give you information about where to go for an evaluation if you are outside the US.

 

Detox your home.

An easy transition if you haven’t made it already is to stop using toxic cleaning chemicals. There are many more natural alternatives. Leave shoes at the door so outdoor toxins don’t get tracked in. Stop using plastics with BPA (or plastics in general) and get rid of your non-stick cookware. For more ideas check out 20 Ways to Detox Your Home by Dr. Frank Lipman

 

Reduce or remove processed foods.

A good rule of thumb is to try to look for products when you shop that have less than 5-6 ingredients, all of which you can pronounce. Processed foods can damage the gut and increase inflammation in the body.

 

Consider trying diet changes like removing dairy and gluten.

The majority of kids on the spectrum see an improvement in symptoms (to varying degrees) when diet changes are made, but diet changes can be tough. Healing Hope Tribe has created a step by step course to walk you through the science and the process and included it for premium members. 

 

Consider using Ibuprofen instead of Acetaminophen (Tylenol/Paracetamol).

Acetaminophen depletes one of the body’s most powerful antioxidants, glutathione,  a major player in the natural detoxification processes within the body. For most kids it’s not a big deal, but many children with an autism diagnosis show lower than normal levels of glutathione on testing. Adding something else to the body that further limits their detoxification capabilities can be catastrophic.

Seek out a Functional Medicine doctor who has experience with autism.

The majority of pediatricians aren’t trained to help you and your child with the symptoms of autism. The model of care they use is great for acute issues, but not for complex ones like autism that can have many root causes and interwoven symptoms. Functional medicine doctors have a unique approach that identifies the root causes and restores health instead of just masking symptoms. Our second course for our premium members discusses your provider and testing options in detail and members have access to our provider list as well.

 

At Healing Hope Tribe we strive to provide the resources and support to help parents and their kids on the spectrum thrive and maximize their health. Even if you don’t have a diagnosis yet, the tips and resources we provide may help you understand the causes of difficult symptoms like picky eating, aggression, speech delays, and more. When you find the cause, you can start to heal it.

 

If you feel scared and need support. . .

 

If your gut is telling you something is wrong, but you don’t know where to begin. . .

 

If you feel overwhelmed by all the conflicting information or treatment choices. . .

 

If you want to be a strong, confident advocate for your child. . .

 

The parents at Healing Hope Tribe are here to help, we have been there. We know how isolated and lost we felt and how much we needed support. If you aren’t ready to join our Private Community, but want more free guidance, we get it! We’ll send you our Free PDF Guide and 9-Day Email Mini-Course Series with some first steps you can take. Just fill out the form below and we will send it your way, right away.

 

 

 

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Holidays on the Autism Spectrum

Holidays on the Autism Spectrum

Holidays on the autism spectrum

Holidays on the Autism Spectrum

For many, this time of year means traditions, big meals, and gatherings with extended family. It can be a time of celebration, connection, and joy. However, holidays on the autism spectrum can be a very difficult time. This is especially true when you and your family are still adjusting to a diagnosis.  When your child doesn’t understand or fully participate in the traditions you hold dear it can be hard and all of the changes can be difficult for your child. 

We know not all of our readers celebrate Thanksgiving or get pictures with Santa, but we hope that sharing Alexis’ story gives you hope and comfort through whatever holidays you cherish this season.

Positive memories

When I was a kid, Thanksgiving meant all of the cousins playing together for hours while the adults did adult-y things.  We ran, chased and played games. The eventual sadness came when the day was over and it was time to go home.

Now that my cousins and I have kids of our own,  we all still get together for Thanksgiving. It’s fun to watch the kiddos play with each other just as we did.  However, there was a time when I dreaded the approaching holiday season.

When normal is exhausting

At Thanksgiving, while all the kids were running around and playing hide and seek, my kiddo would be by himself. He wouldn’t engage with the other kids.  I’d spend the day making sure my son wasn’t trying to climb up furniture or try to eat something random he found on the floor.

My husband and I would be on hyper-alert, watchful in case our son decided to sneak out a door into the snow or get into the million other things that weren’t child-proofed like they were at our house. I wouldn’t get a chance to catch my breath, chat with my grandma, or enjoy a glass of wine.

I’d leave the festivities emotionally wiped. It’s so hard to see your child so drastically different from other kids. Initially, I’d get excited for the build-up to the holidays. Then came the realization that my child didn’t fully understand what the excitement was all about, nor did he really care to participate…. and it broke me.

My Santa Secret

It was devastating to see the kids waiting patiently in line ready to visit the mall Santa, while I had to hold on to my boy with all my strength because he was wiggling in my arms, screaming and dying to get away.  Then actually willingly sitting on Santa’s lap? Forget it.

Recently, I looked back on the mall Santa photos..the first one in 2014, my guy was 2 weeks old. The year later, he was a darling little one year old. 2016 rolls around and you can visibly see that something had changed in my kid.  (My son is one of the kids that “regressed”…in our case, around 14-18 months we noticed a big decline.)

Last year’s Santa pic was such a cluster, that I actually jumped in to hold my kid still for a photo. Enjoying holidays on the autism spectrum can be easier when you compromise and adjust your expectations. Make something work for you and your child as best you can.

You’re probably asking why the heck I continue with the Santa pictures?! Well, each year, I secretly hope that this is the year that we’ll get a good photo… and at least in photos, things appear…dare I say, normal?

Hope and Gratitude

In May 2017, my kiddo got his ASD diagnosis.  By June 2017, we were full-on biomed, an approach to treating the medical symptoms of autism. The goal is to increase health and quality of life.

Over the last year and a half, I’ve seen my son grow and achieve so much. He was able to make this progress because parents – also with special needs kids-  took the time to share their stories of recovery, giving me hope. Their experiences with autism treatment helped me understand our options. In turn, pointing us in the direction that made sense for my kid. For that, I’m eternally grateful.

My son’s speech is exploding, he’s following two-step instructions, he’s able to match and sort and use the language he has to get most of his wants and needs met. He’s sleeping like a rock through the night and he’s almost fully potty trained.  HE’S PLAYING WITH HIS COUSINS!

This is the first Thanksgiving (and holiday season, really) since before my son was two that I’m actually looking forward to. I feel like we’ve turned a corner and my son is heading down the path to recovery. I know his language is lagging behind other kids his age, but he’s making steady progress.

He probably won’t sit down to eat for the duration of the big meal, but that’s pretty typical for kids his age. Sitting still is hard when you’re 3! I’m not sure if he will understand all of our family traditions this holiday season and our holidays may still have their challenges. I will be doing my best to stay present, relax, and enjoy the season.

I have so much to be thankful for this year.  And it feels good to finally be at this point…so good.

New Traditions

Perhaps you aren’t in a place where you’re looking forward to the holidays.  There are so many parents who are right there with you even if they aren’t talking about it. We’ve been there too.

What helped me in the period of time between the decline, diagnosis and eventual improvement in my son’s symptoms through autism treatment was making new traditions of our own.  

Last year, we stayed home in our jammies for Christmas instead of dashing off to auntie’s house in fancy holiday clothes. The kids actually got to relax and enjoy their gifts instead of being plucked away to go have Christmas dinner elsewhere.  

We did Easter a little differently than in years past.  We opted out of the 4th of July neighborhood parade and went swimming instead. All of these alternatives were fun for the kids and honestly a lot less stressful for us too.

Initially, it stung a little to not do the things that we’d done previously, but we were able to adjust and create a new normal that worked for our family.  

My wish for you this holiday season is that you find your new normal, even if it’s just temporary. Lastly, please remember that it’s ok to be disappointed…as long as you don’t lose hope.  <3

Hang in there,

Alexis

2019 UPDATE:

Since this post was written in 2018, Squishy has made undeniable progress.  We spent a little over a year treating the virus that caused inflammation in his brain and compromised his immune system.  Now that the virus is behind him, we have shifted our focus to treating his mitochondrial dysfunction. 

Through the implementation of a customized mito cocktail, we’re able to support his body on the cellular level. (Think of it like putting premium gasoline in a car – the car performs better!). When his body is properly supported he thrives.

Since last Thanksgiving, Squishy has shaved 14 points off of his ATEC score. He is fully potty trained and is using 3-5 word sentences.  He’s able to answer questions, express his feelings and ask for what he wants.  Fine motor skills are improving and new interests have emerged.  He’s so much happier! 

We’re thankful that we were able to uncover the root causes of his issues and address them. This was possible because I learned about our options and about the testing we needed to do to give us a direction. We were able to do this through collaboration with skilled providers and with the support of other parents to keep us going. 

Our hope is that you’re able to uncover the puzzle pieces for your child and that you too can be celebrating a year of progress and growth. More than anything we want you to know that there is hope. We’re here to support you along the way. 

Wishing you and your family joy, health, and happiness. . .

Alexis

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