Looking Back: A Special Needs Child’s Struggle for Freedom

Last updated on November 24th, 2025 at 06:17 pm

As our kids go back to school, I thought I would remind you to look back and appreciate all the struggles and victories you and your special needs child have faced. As I have mentioned, my child was never supposed to walk or talk but she does all that and more. Even if she had never made those strides (pun intended) we would love her and be proud of her, because the end result is not important – it’s the fight. As a a parent I have also had to fight – the school, the system as well as my own worries and expectations. Watching my child and other special needs children battle for their own type of freedom gives me even more admiration for all who are fighting every day in this country to keep us free.

Here is an excerpt from a piece I wrote for a fundraiser for The Chime Institute, which runs my child’s charter school based on inclusion. It was performed at Chimeapalooza as part of a multi-media celebration.

When I heard from the Regional Center that there was a CHIME Infant and Toddler Program for my baby daughter with special needs, I almost cried. Then, when I heard that I could bring along her typical twin brother and that it was free, I think I did cry. The Infant and Toddler Program was 65% special needs kids and 35% peer models. I loaded up my sixteen month old twins and explained that yes, he was walking and that no, she was not – and maybe she never would.

But she did. She graduated out of Regional Center Early Intervention, and the parade of therapists coming to my house stopped. From there the twins went to the CSUN Lab School – aka The Child and Family Studies Center. This time the program was 65% typically developing children and 35% of the program was saved for children with special needs with support from CHIME. I had to explain that yes, he pretty much knew how to use the potty and that no, she didn’t use the potty yet…and maybe she never would.

But she did. Preschool came and went, and then it came time for the lottery for the CHIME Charter Elementary School. I found my way through the maze of residential streets south of the boulevard…and a mysterious orange orchard…and handed in their applications. Maybe I was kidding myself. I knew the odds were stacked against us and that most children don’t get in, but maybe she would.

But she didn’t. But her older brother did! And that meant…the twins were in, too! I requested that they stay together in their kinder classroom – only the first of many, many requests I would make of the CHIME administration – and so off they went, still together.

One day on the way home from pick-up with all three of my kids in the car my kindergarten-aged son asked an innocent question, ”What is the big deal about special needs kids? I mean, why does CHIME talk about them so much?”

“Well…” I answered, tailoring my information to be age-appropriate, “CHIME believes in inclusion, which means that even though the kids can all do different things you can all learn together and be friends. So each class has some special needs kids in it. Like your class has three…”

He cut me off. “No, we don’t. We only have two.” He rattled off the names of his classmates with more obvious special needs. My daughter nodded her agreement. I felt my upper lip break out in a sweat.

“Yes, honey,” I said gently, “your class does have three special needs kids in it.”

“No it doesn’t!” he repeated adamantly, reminding me of his two classmates.

I jumped off the cliff. “The third student with special needs is your sister.”

“No she isn’t!” he objected as if I was playing a silly joke on him.

And there it was…living, breathing proof that the experiment that is CHIME is working so incredibly well. They didn’t see themselves as different from each other, …and maybe they never will.

Our Miracle Baby: Aidan’s Story of Surviving CDH

Last updated on September 27th, 2025 at 12:11 am

When I was asked to write a post about my son and the life-threatening birth defect he was diagnosed with at 37 weeks…I jumped at the opportunity. My son is a survivor but many are not, and I have been doing everything I can to help spread the word and try to increase awareness. The birth defect is called congenital diaphragmatic hernia (CDH). It’s definitely a mouthful but in layman’s terms, it means a hole in the diaphragm. I’ll get into more detail later, but even though the diaphragm is kind of a forgotten muscle (especially when the baby is still in the womb), suffice it to say that when there is a hole…the survival rate is only 50%.

The diaphragm’s main purpose when the baby is in the womb is to separate the abdominal organs from the chest organs. When there is a hole in the diaphragm, the abdominal organs can pass through that hole. At the very least, the extra organs in the chest cause the lungs to be underdeveloped (due to the extra organs taking up the space the lungs need to develop properly). However, when organs don’t develop in their proper location it can lead to all kinds of other issues such as heart defects, chromosomal abnormalities, premature labor, etc.

We found out after 37 weeks of what we thought was a perfect pregnancy that our son’s stomach had passed through a hole in his diaphragm and caused his heart to be pushed to the wrong side of his chest.

As I mentioned earlier, CDH has a mortality rate of 50%. It occurs in 1600 babies per year in the US and is just as common as spina bifida and cystic fibrosis. However, there is very little research on the cause and there is no known cure other than treating the symptoms with surgery and/or medicine. So basically we went from what we thought was a picture perfect pregnancy to being told our son had only a 50% chance of survival due to some birth defect we had never even heard of. We were devastated! I can honestly say that Monday, 5/24/2010 was the worst day of our lives. We felt lost, alone, blindsided, and had no idea where to turn.

If there was any good news from the events of 5/24, it was that we had (hopefully) enough time to make arrangements to prepare for Baby R’s arrival. We wanted to make sure that we were comfortable with all the doctors that would be taking care of our son as it could mean life or death. In fact, the first surgeon assigned to us could not find the time to meet with us for at least a couple weeks. A couple weeks, I didn’t think we had. Since my wife’s fluid levels were elevated, there was a high likelihood that she could go into labor early which meant at any moment.

At this point, I started researching alternative hospitals and doctors. After visiting two hospitals in Chicago, we settled on staying in Chicago and having our son delivered at one hospital and transferred to Children’s Memorial after being stabilized. We were extremely pleased to learn that the head of pediatric surgery at Children’s Memorial Hospital in Chicago was extremely knowledgeable about CDH which calmed us down as much as possible That is to say…just a little bit.

Fast forward to June 17, we got to the hospital around 7:15 on 6/17/10 for the scheduled c-section. Things were going really well from the start. As always, Amy’s vitals were great and so were Baby R’s / Aidan’s. At around 10 am, Amy was brought to the OR to give her the spinal anesthesia, etc. I had to go to the adjoining recovery room until they were ready for me.

That was probably the longest 25 minutes of my life. I was in my scrubs, pacing back and forth just waiting for them to come get me. I had nowhere to go, was nervous for our son, and anxious for Amy.

I was finally brought into the OR to see Amy. There were 2-3 OB’s, 3 neonatologists, a couple anesthesiologists, and I think a couple other doctors there for support. The main OB (who happened to be the one who diagnosed the CDH in the first place) was great at giving us as much play by play as we wanted.

And then all of a sudden, we heard a little cry. I have never been so happy to hear a baby cry in my life. Many CDH babies don’t have enough lung capacity to even cry at all. That fact that Aidan gave out a little cry was a great sign (we hoped), and Amy and I both let out a collective sigh of relief.

I could see Aidan struggling and catch a glimpse of a finger or toe periodically. The doctors said he looked great, great color, and the fact that he was fighting the doctors was another good sign. He wanted to breathe on his own. Finally they called me over to cut the cord, and I was able to get my first good look at him. He looked amazing…my face, Amy’s nose and hopefully someone else’s height…

I went into overdrive at this point to ensure Amy got a chance to see Aidan. I snapped a quick picture on my phone so Amy could at least see what he looked like. Then suddenly it was time to wheel him away to the NICU.

In route to Amy’s room, we stopped by the NICU, and we were able to spend 15-20 minutes with Aidan. He looked great but was fighting with the doctors big time. We found out that the transport service was already on the way.

Aidan was doing so well after being transported to Children’s Memorial, that the surgery to fix his hernia (the hole in his diaphragm) was scheduled for 6/21 (when he was 4 days old). Typically surgeons do not rush to fix the hernia through surgery. Current research has shown that it’s actually more beneficial in the long-run to stabilize the baby and allow him/her to get as strong as possible before doing surgery. This can mean days or months before some CDH babies are ready for surgery.

After 2.5 hours of surgery, the surgeon came out to the waiting room to talk to us. Her first words were, “he’s a miracle baby—with a great name”. She told us that the surgery went really well but that he was actually in much worse shape (before surgery) than everyone thought. Since he had been so stable since birth, everyone thought that his lungs would be in great shape and that only his stomach and some of his intestines would be in his chest (at the very worst).

The reality was that everything was in his chest…his stomach, small & large intestines, spleens (yes he has two), etc. Basically everything but his liver was in his chest. All those organs in his chest caused his left lung to be moderately underdeveloped and his right one to be slightly underdeveloped.

In addition, he had no diaphragm at all. This was all a shock to the surgeon since Aidan was basically stable from the minute he was born. His breathing, oxygen levels, blood pressure, etc. were so strong and stable that is was a bit of a surprise that he was actually in such bad shape technically. But his right lung was relatively well developed which obviously was able to compensate for the weak left one.

The doctor had to move his organs to their proper places and then make a new diaphragm using Gortex. It is very common for surgeons to patch the existing diaphragm but Aidan didn’t have enough muscle tissue to do that. The surgeon also had to create a new hernia or hole in his abdomen. This is sometimes done when there isn’t enough room for all the organs once they are moved back to their proper locations. Basically Aidan’s abdomen is not used to having so many organs in it, so they created a little extra room for his stomach to grow for the time being. He will need to have another surgery on 7/21/11 to close this hernia (and put his stomach back in its proper location), but it will be “minor” surgery compared to what Aidan has already been through.

Once Aidan was moved back to the NICU, we got to see the incision and see how he was doing. The incision was about 4-5 inches across his stomach area. But the neonatologist made a point to tell us that she rarely sees a baby come out of such major surgery and need so little oxygen. He was completely sedated (and was using a ventilator to help him breathe 100%) but his oxygen level was almost already back to normal. I got another update from Aidan’s nurse that evening. He was barely awake; however, he was already starting to breathe on his own in addition to the ventilator.

We had our ups and down post surgery. Aidan was extubated, weaned off all medications, etc. only be re-intubated less than 24 hours later and put back on all medicines (with methadone added to the mix). But in the end, Aidan came home after only 29 days in the NICU. We were pretty naïve to what other CDH families went through at the time, but I had a feeling that 29 days was a short time to be in the NICU. I now know that with such a severe defect, we were extremely lucky that Aidan was able to graduate from the NICU after such a short period of time (or even survive past the first day for that matter). Aidan was able to come home with basically no signs of CDH other than a large scar on his abdomen.

Aidan had no reflux (a very common side effect of CDH that can last for years) and no other chromosomal abnormalities or heart defects. He was basically a normal 1 month old. However, Aidan would still need to have a hearing test every 6 months for the next 5 years. His surgeon has seen some high frequency hearing loss in CDH babies up to the age of 5.

My wife and I went through a lot to educate ourselves on this defect that we had never heard of in order to prepare for our first born. But this entire ordeal has definitely made us stronger, and we appreciate life, love and our son more as a result.

In hindsight, I feel ignorance was actually bliss to a point. I am almost glad I didn’t know as much about CDH (before Aidan was born) as I do now. If I had been as informed, and realized that of the 1600 cases per year in the US only 50% of the children survive once diagnosed with a hole in their diaphragm and that children without a diaphragm at all are even less likely to survive…if I had realized that there was no known cause or cure and that very little research has been done to try to find the cause…if I had known that often CDH babies have to endure multiple surgeries throughout their lives (which sometimes are cut prematurely short), I think I might have actually been even more scared than I was. For a child with such a severe defect (no diaphragm at all), Aidan blew away the odds which was more than anyone could have every anticipated.

In the end, Aidan was 1 of 800 babies to survive in 2010 after being diagnosed with CDH – a defect virtually no one has ever heard of.

Getting Braces – A Kid’s Perspective

Last updated on September 27th, 2025 at 12:08 am

Getting braces can be a big deal in some kid’s lives and they may not even want to get braces. However, it is very important that, if needed, your child should get braces and also manage them well. If people don’t get braces as a child it could cause serious health problems as an adult including increased risk of tooth loss and extreme discomfort. It’s also not very attractive looking.

Kids could need braces for crooked teeth, over spacing of teeth, or overbite problems. And you may not realize that your child needs braces. I had straight and near-perfect teeth, but I had a slight overbite and a little bit of a spacing problem. When I heard I would need braces for a short while I was perfectly willing and almost indifferent. This is because my mom had braces as an adolescent and has told me she was very glad about this; at the same time my dad did not have braces and his teeth are so crooked, one of them is practically facing sideways and he has always regretted not getting them.

The process for getting braces was fairly simple, on my end, at least. I visited the orthodontist for an assessment over whether or not I would actually need braces. He examined my teeth and showed me some before and after pictures (your child may see some friend’s teeth, I did!) then told me I would need them for about two years with no headgear (some kids wear headgear when they sleep). I later went for a mould of my teeth so the orthodontist could custom fit my braces (Try not to swallow the molding mixture; I hear from friends it’s nasty when swallowed). I got the top on first and the bottom braces on a few months later. I now visit about once every one to two months to get them tightened.

With the braces there are some food restrictions such as no popcorn or bubblegum and apples must be cut up, but you get used to it. Most food will get stuck in the braces, however. To deal with issues such as this the office arms each kid with an array of tools: small brush-picks, topical numbing agents for pain, wax to prevent the brackets from scraping up the gums, a convenient carrying case, etc. I carry my accessories in my backpack and make good use of them. On the note of numbing agents and pain, your child will want to use painkillers and eat soft foods for the first week of having braces and possibly after each adjustment depending on the sensitivity of their mouth. I play rugby, a contact sport for those that don’t know, and I had to get a specialized mouth guard to protect my braces. If your child plays a contact sport you will also have to get a specialized mouth guard but they are easy to find so don’t worry. They do not, however, guarantee the safety of your child’s braces so you may have to take them in for repair. For any parents concerned that their child will get teased or called brace face, don’t worry! Probably 99% of kids these days have braces so it would be completely stupid for a kid to pick on someone for the norm.

What NOT to Share: A Back-to-School List for Food Allergic Kids

Last updated on September 27th, 2025 at 12:08 am

How many of you adore hand-me-downs, gently used items or family trades? I admit, I absolutely do. It’s like an untapped resource for unexpected gifts. The anticipation of going though the items to see what will fit and what kinds of items are hiding inside. Many of us love it but few actually own up to it.

But what happens when you have an allergic child who receives these golden goodies? The truth is, there are items that may not be safe to share. Thankfully, with all of the current research and information being passed along, we continue to have better odds at keeping our child’s allergic reactions to a minimum. A simple start is to consider things that you may not have in the past; the back-to-school items that are being distributed as we speak.

Backpacks– Every child needs one but who was the last child to have it? With food allergies, consider what the previous owner housed inside of that bag. After all, snacks and lunches are a daily part of the school day so what’s to say that a previously-owned backpack might not have traces of those foods in them. Bags break, drinks spill and special classroom goody bags tend to open up between the time they were given out and when they actually made it home. If you have a child with food allergies, this might be something that cannot be chanced.

Water Bottles & Thermos– Yes, we all love to get the cute little character thermos or the pink and sparkly princess cup for our children but a sip from these may turn into a drinking disaster. Yes, these items can be washed and even run through the dishwasher but allergens have a sneaky little secret- they like to hide in hard to reach places. These crevices cannot always be made safe enough for your child with food allergies. There has even been reported proof that heat does not always get rid of allergic particles. Instead of getting excited about the brightly colored items, become enthusiastic about keeping your child safe instead.

Lunchboxes- Same scenario, different shape. Don’t get me wrong, as a parent you cannot help but have an overwhelming need to want to give these items to your child, especially if their favorite new show is plastered all over the front of it. But alas, think back to when your child had their last lunchbox; how many days did it come home with food particles and dripping from the day’s accidental overturn?

Calculators- Yes, your eyes did not deceive you- calculators. Simple fact about calculators- they come with many, many tiny areas that foods can be hiding out. This also includes school issued calculators. If you have a choice, purchase your own and label it clearly with your child’s name so there is no confusion about who it belongs to. If budget is an issue, check the flyers for coupons and ask if you can use someone’s business discount card for an office supply store. After all, the price of your child’s life is still worth more than buying an overpriced school item.

Glue Sticks- And by this I mean those leftovers from the end of last school year that somebody started to use but didn’t finish. Why avoid them? Glue is sticky and it’s another way for food particles to get trapped, literally. And if you are a parent who has attended one of those crafty class parties, you have seen how fast the glue sticks travel to and fro. Luckily, glue sticks are one of the cheaper school items that you can find at any dollar store or even included in the lower sale priced items in back-to-school sales.

Band Instruments- This is a personal pet peeve of mine anyway because as much as someone can tell me they have thoroughly cleaned an instrument, they still cannot tell me that it’s the cleanest thing to share. I know it may silently kill your pocket book when you are weighing the cost of a new instrument versus a used one but stop and look at your child- would you chance saving those extra dollars instead of saving their life? It’s always better to be safe than sorry.

Being a parent is always difficult, whether your child has food allergies or not. We all have to spend a lot of time thinking of how we can keep our children protected from anyone and anything. Our hearts go with them each and every day that they leave us. And although we are brought up being told that it’s nice to share, sometimes it’s nicer not too.

The Baby Teeth Myth

Last updated on September 27th, 2025 at 12:08 am

Although you only have them a few years, your “baby” or primary teeth are of the utmost importance. They are essential in the development and placement of your permanent teeth. Parents can contribute to their child’s oral health from the start by taking care of teeth from “babyhood.”

Baby teeth are more important than many realize. Primary teeth maintain the spaces where permanent teeth will erupt, and they help develop proper speech patterns. Otherwise crowding and misalignment can occur, resulting in more complicated treatment later in life. Primary teeth also are primers for teaching your child proper oral care habits.

Even though primary teeth last only a few years, decay, cavities and infection can take its toll – therefore it is essential to care for them as if they were there to stay.

There are several ways to protect your child’s teeth at home.

• Babies’ oral health can be protected by cleaning his or her gums with a damp cloth after feedings.
• Brushing with a soft brush and water should begin as soon as the first tooth erupts.
• Wean children off of bottles, pacifiers and thumb sucking around one year of age in order to prevent the misalignment of teeth as they erupt.
• To prevent tooth decay, avoid putting a child to bed with a bottle of milk, juice or other sweetened liquids.
• Children can usually practice good oral hygiene themselves around age five. The best way to teach a child proper oral health is by providing a good example.

Dentists want to see your baby’s baby teeth as well. Your child should visit the dentist for the first time right around his or her first birthday, or approximately six months after the eruption of his or her first tooth. Taking your child to the dentist this early is the best way to prevent oral health problems, and it will help familiarize the child with the dentist as well. The first visit is primarily an icebreaker for the child and the dentist. If the child is compliant the dentist will do a gentle but complete exam, a cleaning, and take x-rays. It is very important the first visit go well so that the child gains trust and comfort in going to the dentist regularly. Patience and calmness from the parent is also important, to show the child you trust the dentist as well. Appointments scheduled early in the day are best, avoiding nap times, so that the child is alert and fresh.

Baby teeth don’t last forever. Children typically start losing primary teeth around five to six years of age. They will most likely continue to lose them until around twelve to thirteen years of age, at which point most of his or her permanent teeth have erupted. Primary teeth should be lost as naturally as possible, and should not typically be pulled until the permanent tooth makes it loose. If a primary tooth is pulled too early, then it increases the chance of the permanent tooth becoming misaligned or crooked. Primary teeth fall out because the permanent tooth is pushing them to make room. Most teens have a total of 28 permanent teeth, plus four additional teeth, wisdom teeth, that will grow in behind in late adolescence.

Armed with this information, you will have the capabilities to give your child a healthy smile from the start.

Why Does Your Child Bite …And What Can You Do?

Last updated on August 3rd, 2025 at 12:25 pm

While it’s shocking and probably embarrassing when your child bites, it’s not unusual behavior for young kids. When children are overcome with feelings such as anger, fear, frustration or disappointment, for example, because another child has possession of a toy they want, they don’t have the language to express it.

IN A NUTSHELL: 5 of the 10 reasons in Bloom – WHY KIDS BITE.

1. They do not have the language, words or ability to express what they need to say.
2. They are frustrated, upset or irritated, and biting seems to be the quickest way for them to communicate this.
3. The child is overwhelmed by sensory input when several other children are present.
4. Even though the child “knows” biting hurts on a cognitive level, he may not have developed the emotional maturity to control this urge when frustrated.
5. At a young age, biting is normal and needs to be redirected.

YOU HELP THE CHILD… by stating how he might feel and providing him with the solutions (new words, thoughts and behaviors) the child cannot find on his own. It’s important to help the child figure out, what thought, feeling or perception caused their escalation because awareness provides the opportunity to make a different choice next time.

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Written for real parents with anxious, angry and over-the-top kids, Bloom is a brain-based approach to parenting all children. Taking its lead from neuroscience and best practices in early childhood mental health, it offers parents, teachers and care providers the words, thoughts and actions to raise calm, confident children, while reducing the need for consequences and punishment. The first book of its kind, it provides pages full of printable mantras you can carry with you, hang on your fridge or use in your classroom to raise emotionally competent kids. Stop second-guessing the way you handle misbehaviors, and learn why they occur in the first place. Bloom is available at amazon.com

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