“Don’t make him more different than he already is!”

My husband has told me this several times over the last 18 months and it most recently came up again on Canada Day (July 1). Typically on July 1 we go out on our boat to see the fireworks display over Georgian Bay. This year I suggested that maybe my husband should just go with Olivia and I would stay home with Oscar. My husband was confused by this, “Why wouldn’t we take Oscar?” and I of course responded with “Well it is really late and it will mess up his sleeping schedule.” (I think like most parents who have a child with epilepsy you become very protective of their sleep because you know that a lack of sleep can cause problems with seizures.) This is what prompted my husband to say, “Don’t make Oscar more different than he already is!”

I know he is right, but it is so much more difficult to put into practice. Seizures can be triggered by several things (I am certainly not a neurologist nor do I profess to be an expert… just as a mom, but I am sharing what our neurologist told us); an increase in body temperature, sleep deprivation, dehydration, missed medication, and there are others. I am VERY aware of how my son is doing in those catergories listed above daily.

Because of this, I think it is normal as a caregiver to be protective of the triggers listed above in order to reduce the risk of seizures. But, I know that sometimes I can take it too far and this is how my husband balances me out. “Don’t make him more different than he already is!!” meaning don’t “freak out” if he wakes up while we are on the boat and loses an hour of sleep, let him experience the boat ride and the fireworks. Allow him the opportunity to have experiences.

We now have 18months of experience with my son’s epilepsy and have learned that Oscar is not as sensitive to the triggers as maybe some other children are. I am certainly not suggesting that you inappropriately challenge the triggers, all I am trying to say is that we have learned the boundaries that are safe for my son and my husband helps me to allow Oscar to experience things that are appropriate for him within those boundaries.

This doesn’t only pertain to epilepsy. My son also has hearing loss and wears hearing aids. He cannot wear hearing aids in water and for at least 30minutes once he gets out of water so that his ears can dry out. This makes me reluctant to take him swimming or to play in water because I want him hearing properly with his aids so that he can develop his language skills. BUT swimming and playing in water is such a wonderful experience and sensory activity for him. I want him to learn how to swim and to be comfortable in and around water even though it means sacrificing his hearing aid time.

I continue to work on not making my son more different than he needs to be and allowing him to experience things that are appropriate for him. I often tell myself not to let my anxiety get in the way of his development. It is a challenge, but I am very thankful to have my husband who balances me.

There is this wonderful underworld of parents who are raising children with special needs. I never imagined that I would be apart of this underworld but now I am. Parents who belong to this world understand one another because we have all experienced something similar. We “Get it”. Friends and family have the best intentions by saying that they understand, but they are unable to truly “Get it” because they have not lived it.

They have not lived in emergency rooms, watched their child go through endless testing, ridden in ambulances, or spent days or even weeks inpatient with their child. And thank goodness they haven’t! It’s traumatizing. They don’t have a packed hospital bag in the back of their car in case they have to suddenly go to the ER and end up getting admitted to the hospital. They haven’t left in the middle of the night taking one child to the ER and their other child has woken up, surprised in the morning to find grandma and grandpa making breakfast and not their parents. These are things that are impossible to understand unless you have lived it.

We have family and friends who have come over in the middle of the night or taken my daughter for a few days to allow my husband and I to go to the hospital together. I have friends that live far away and are happy to just listen to me talk on the phone. We are surrounded by an amazing family and group of friends who support us. Even though they might not “Get it”, they support us 100%.

To those people: it is okay that you don’t understand, I am glad that you don’t. Just being there in the ways that you have been has helped in ways that “thank you” doesn’t seem like enough. You know who you are.

I titled this post “Underworld” because it is. Although we have had my son’s diagnosis for a year and a half, it is still painful to talk about. My son’s first year of life was by far the hardest year in mine (and I survived cancer). Part of it is a blur and part of it I remember so vividly. I have not shared a lot of my son on my regular social media account. I am not sure exactly why. Maybe it is because I know that he is “different” and I am worried that he will be secretly judged or looked at in a certain way that I am not ready for. I know that he is “different” and no matter how hard I try he will always be “different”. I have wanted to protect him, or maybe protect myself from that for awhile. I have felt liberated by my new instagram page because I now feel comfortable posting pictures of my son freely. Knowing that I am creating a safe place for myself to share all aspects of my “special family”. I have created my own underworld in a sense.

I want to gain the strength to be an advocate for my son. I want to be able to say “yes he has different needs compared to a typical child and how can you help me, help him create a life for himself”. I want to be able to share my blog on my personal social media so that typical families can have some sense of the inner struggles experienced by a mom and a family raising a child with special needs. I think that knowledge can create compassion. And maybe this knowledge will translate into more doors being opened for my son and also for other children who have special needs in the future

I think that this is the end goal for my blog. To bring my inner struggles to light and help in anyway that I can to unveil this Underworld.

I have shared a lot of my journey so far, but I wanted to change gears for a moment to give an update on where we are today. As I mentioned in an earlier post Oscar has been diagnosed with a genetic condition called 1P36 deletion syndrome which means that he is missing a portion of his first chromosome. This deletion can cause a host of issues including: gross developmental delays (speech, social, cognitive, gross and fine motor), eating difficulties, heart defects, brain abnormalities, seizures, hearing loss, visual defects all ranging from mild to severe. My son has had medical work ups in all of the above and is currently followed by 17 healthcare practitioners, 17!!

My son does have developmental delays. He is 20months and doesn’t have any words yet. We work on “mama” and “papa” daily and would love to hear those words someday. He sat on his own at 10months and was able to get himself into sitting by 15months. He started crawling at 17months. Today we are working on pulling up into stand, standing independently and walking. He did have delayed eye contact, but socially he seems to be doing well now. It is hard to get a grasp on his cognitive abilities because his expressive language is delayed.

Regarding his fine motor abilities, Occupational Therapy has been focussed on feeding, and now that that is better (we have transitioned to primarily solid foods) the plan is that we will start to focus more on fine motor tasks in playing. Oscar has never been a good eater. I tried EVERYTHING to breastfeed and it just didn’t work so as of 7weeks old he was formula fed. He was introduced to pureed foods at 9months and we started “soft solid foods” (Ex: banana, avocado) at about 12months. He now can eat more challenging foods including shredded meat/chicken, toast, cheese, steamed vegetables and pasta. He is able to manage a sippy cup independently and we are working on the transition to straw drinking. We are also allowing Oscar to “self-feed” more.

***Just a side note on self feeding. For parents of children who have struggled to eat, this transition is TOUGH! I literally used to count how many bites he would take in a meal and I am now trying to break this habit. It is really hard to go from feeding your child and knowing how much of what they are eating to self feeding. 1) Are they getting enough food? 2) Are they done eating or are they becoming frustrated and are giving up on that meal? 3) Do they have the fine motor abilities to pick up the food? My point is there are so many challenges and it isn’t as simple as letting the child feed themselves (although this is the end goal).

Cardiomyopathy (disease of the heart muscle) is a risk for children with 1P36 deletion syndrome and can develop over time so we do follow up with a pediatric cardiologist. Oscar does have a mild heart defect which isn’t expected to cause any functional issues.

He does have a brain abnormality called “polymicrogyria” (extra, small folds in the frontal lobe of his brain) which is the source of his seizures. I am afraid to say it out loud, or to write it down. For whatever reason if I put it in the universe I am worried that I will “jinx” it, as silly as that sounds. Anyways, I won’t get into specifics, but Oscar has been seizure free for a good amount of time (managed by medication). In late December 2019 we weaned him off of phenobarbital successfully and he is now just on Topiramate to control his seizures. Oscar’s polymicrogyria is “extensive” and this means that he has a high potential for seizures, the neurologists suspect that he will be on some form of anti-convulsant medication life-long and doesn’t recommend weaning him off to the Topiramate.

Oscar was diagnosed with moderate to severe “mixed” hearing loss in both ears at 3 1/2 months old. He got his hearing aids at 4 months old and he wears them religiously. The “mixed” hearing loss means that a portion of his hearing loss is related to dysfunction in the sensory structures of his ears and some of his hearing loss is a conductive loss meaning how the sound enters his ears. He is followed by an ENT and an Audiologist. Now that he is older, the ENT is willing to try putting tubes in his ears to see if this improves his natural hearing by addressing the conductive portion of his loss. We are lucky that his hearing loss appears to be stable (not progressively worsening which can happen) and that the hearing aids allow him to hear “normally”. Putting tubes in his ears will hopefully improve his hearing when he isn’t wearing the hearing aids for example in the bath or pool and at night. Because of his hearing loss he was fast-tracked for speech therapy and he has a deaf and hard of hearing teacher who comes to our home every other week. Once the Hospital for Sick Children opens up for elective surgeries, Oscar’s procedure will be scheduled.

Visual deficits is the final category that can cause problems for children with 1P36 deletion syndrome. Oscar does follow up with a Pediatric Opthamologist annually. His last check up was at 6months old and at that time his vision was “typical” for a 6month old. The Ophthalmologist did mention that as he grows he may have difficulty processing complex visual information. He will continue to be monitored.

Olivia is in junior kindergarten. Because of COVID she has been homeschooled since the middle of March. She is such a social girl and is missing her friends, but we keep her distracted at home. She learned how to ride her 2-wheel bike in March and now she bikes daily (5-12kms). We are teaching her to play tennis as well. We are lucky that she has been able fo FaceTime with family and friends. She LOVES her baby brother. The other day she said “I love my baby brother more than I love myself”. I have hope that my kids will always be there for each other. We love them!!

I know that a lot of people will say “ask for help, you don’t have to do it alone”. But for me (and I am sure it is the same for most caregivers) it is really hard to ask for help. I am not sure why that is? Is it because as mothers or parents we are supposed to be able to care for our children all by ourselves? I don’t know….

In February 2019 Oscar was hospitalized for breakthrough seizures and my parents had come to care for Olivia so that both my husband and I could be at the hospital. When we arrived home my parents I think assumed that we would want our own space and said that they planned on returning home. My husband had to return to work and the truth is that I was terrified to be home alone with my kids. I had to ask my parents to stay and they happily did.

During this time, I’ll admit that I was really breaking down and my parents could see it. They suggested that I talk with my family doctor. My doctor is great and she took me in right away. I remember her saying, “I was expecting you to come in and talk with me, I didn’t know when, but I knew that you would”. She understood that we were going through a lot as a family. I asked her to put me on anxiety medication. At that time she declined because she said that I was grieving, grieving the loss of the child that I thought I was going to have and that I needed to process all of those feelings. I had hoped that she would give me this “magic pill” that would make me feel like myself. But she said “no”. This was an emotional time for me and the emotions were very unpleasant. I wanted to get rid of them with medication. (I should mention that I did set up some counseling sessions with my family doctor).

Due to my son’s complex needs, he was able to be apart of the Complex Care Clinic through the Hospital for Sick Children. In May 2019 at one of those clinic appointments was when Oscar’s pediatrician facilitated my first appointment with my social worker. He understood that the mental health of the caregiver was important. Prior to that, I really didn’t think that my feelings were a priority because everything was about Oscar.

My social worker educated me about the “3 Ms: Movement, Meditation and Medication” as being the three things that can help control anxiety. I shared a lot with her and together we addressed “Movement and Meditation”. I was feeling a lot better, but I still wasn’t where I wanted to be. To be honest, I forgot about the “Medication” part mainly because my doctor hadn’t thought that it was appropriate for me. I was a compliant with everything my social worker suggested. But I still didn’t feel like me. I decided to talk with my doctor again about medication.

I was nervous, especially because I had already asked her and received a “no”. I felt ashamed asking for help. I went to her office and told her that I had been consistent with my social worker appointments, I told her that I was running 4-5 days/week (“Movement”) and that I was working on some relaxation techniques (“Meditation”). I was doing two out of the three “Ms” and still I was struggling. She recognized that I had put in the work and she now felt comfortable giving me medication to help manage my anxiety. For me, the medication was the missing piece, it really helped. I have continued with all of my “Ms” and actually am weaning off of my medication now. I am hopeful that I will no longer need it, but I might and that’s okay.

I had to ask for help and I am so grateful that I received it. I believe (I could be wrong) that most parents who are raising a child with special needs struggles emotionally. I hope that if you are struggling you have the strength to ask for help. I know first hand that it is difficult, but it is the best thing that I did for both myself and for my family.

This was a big post for me to write. Six months ago, no way could I have written this out, it was too painful. I couldn’t talk about it for a long time and as I wrote and then proofread this post it still brings tears to my eyes. Some things will just never go away. I am learning to move forward. I know that a lot of people experience some kind of trauma in their life and I am hoping that by sharing my story, maybe you will feel comfortable to share yours too.

Oscar’s first seizure was November 26, 2018, he was 7 weeks old. We took him to our nearest pediatric hospital and they admitted him. He had 7 seizures in a 24 hour period. To watch your child have a seizure is very painful. You are helpless. There is nothing that you can do other than keep track of how long they last. Otherwise you watch and make sure that your child is safe.

He was started on a medication called phenobarbital and this helped him right away. I know that other children aren’t as lucky to have a seizure medication work right away. We are very fortunate that it worked quickly. They did a lot of tests trying to determine the cause of the seizures and everything came back “normal”. They wanted an EEG (electroencephalogram) to look at the electrical activity in his brain but they didn’t have the equipment at that hospital so we were transferred by ambulance to the Hospital for Sick Children in Toronto.

We were only supposed to be there for the test and then return back to the pediatric hospital. As soon as we arrived at the Hospital for Sick Children the neurologist said “you’re staying”. I only had my diaper bag with me, I was not prepared for this literally or emotionally.

Oscar had an EEG, more bloodwork and a radiologist re-looked at his brain MRI images. When the neurologist came in to see us after all of his tests he said that Oscar’s situation was “very worrisome” I asked “what do you mean by worrisome…. is this fatal?” and he responded that we would know more tomorrow. My husband was with our daughter (2 hours away), my parents were unreachable on a Hawaiian Cruise and my in-laws live in Mexico. I was alone with my son and I was scared.

Fortunately my sister was able to take Olivia and my husband rushed down to the hospital to be with us. My cousin who happened to work at the Hospital For Sick Children stayed with me until he arrived. It was a long night waiting to hear the fate of my son. This is my trauma.

A few days later we were discharged home. We were given a lot of information when we left the hospital. I guess I was tired and overwhelmed, because I didn’t hear or I didn’t choose to listen when the doctors said that seizure medication is very dependent on body weight and that “breakthrough seizures” happen. Life went on (we didn’t have his genetic diagnosis at this point).

February 6, 2019, 4 days before Olivia’s fourth birthday party Oscar had a seizure. This was also when I had my first panic attack. This caught me totally off-guard. We ended up at the ER at our local hospital and were then transferred by ambulance back down to the Hospital for Sick Children in Toronto. This is my other trauma.

When I left the hospital in February, I had changed. I remember my mom saying, “you always look like you are about to cry” and I said “because I am”. Life got real. I knew I needed help.

Over the last year I have made myself a priority and allowed myself the time to re-build. I struggle with anxiety now and I have had panic attacks. I know that I am not alone in my struggles. I feel very fortunate to have been given the opportunity to talk with a social worker and I have a wonderful family doctor and support system. Today, I have my anxiety under control and am feeling more like myself. I know that not everyone has the same access to care or support and I wanted included somethings in the “self help” section of my blog that have worked for me. I am hoping that some of the things that I have included will work for you as well. Take care of yourself, you are worth it!

Does anybody have life balanced out perfectly? I certainly don’t. And it got even more challenging after Oscar was born. I often wonder if days would seem less crazy with two typical kids? I will never know! But for me, everyday is a constant balancing act.

As I mentioned in a previous post “Entry Three- Olivia” (see it here) I am especially sensitive when it comes to balancing time between my two kids. I think this is something that any parent can relate to. When Oscar was newly diagnosed and I was still in denial I was researching stem cell treatments and several in-patient rehabilitation centers thinking that there was a “cure” out there. I was doing physiotherapy at home 3 times/day and going to probably 5 appointments/week. In addition to all of that, Oscar had difficulty feeding and a lot of time was focussed there as well. It was during this time when my husband reminded me that “we have two kids”. I don’t think that he knows how much that comment has stuck with me. It has. The balance was way off.

A typical day in my house includes taking Oscar to any appointments he may have and that we carry out his home program for all of his therapies. I need to make sure that my daughter feels important and that she is challenged. I also need to make time to do “typical family things” as well as make some time for myself. I have learned that I need to make myself a priority. I need to be apart of the balance. Because while my husband is at work, I am taking care of things at home and I wouldn’t be able to do that if I wasn’t together myself.

I have been told many times that raising a special needs child is a marathon not a sprint. I was definitely sprinting at the beginning but in doing that I fell apart. It has taken months to put myself back together, although I do think I was put back together a bit differently. I think it would be nearly impossible to remain the same person before and after a traumatic event (I will touch on this in a later post). A big part of that is allowing myself “me time”.

Initially I was so overwhelmed with Oscar’s appointments (he currently has 17 different people on his care team) and making sure that Olivia was okay and I felt like I didn’t have any spare time. I was sprinting and couldn’t slow down for myself. In May 2019 I broke down at our Pediatrician’s office and when he asked me about myself and how I was doing, I didn’t want to waste his time and I said “Oh never mind, it isn’t about me, let’s keep chatting about Oscar”, he said, “no, but it is about you too”. His response surprised me, but also validated my feelings and 5 days later I had my first appointment with my social worker.

This was the best thing for me but also for my family. In my blog I will touch a lot on the things that my social worker and I have chatted about. She definitely encouraged that I take time for myself. My “me time” is usually exercise based because that is what makes me feel best. But I think it is so so important for any mom but particularly a mom of a special needs child to put yourself on the priority list somewhere and CREATE the time for you. I don’t do “me time” everyday, but I try to do it 3-4 days/week.

I have learned that family time can incorporate Oscar’s therapies which can include activities like going to the park and swinging on the swing or going down a slide, sitting out in the backyard blowing bubbles, going for a walk or bike ride. My goal used to be that all of Oscar’s waking hours be structured therapy, to make every moment count. I have realized that Oscar needs to grow up to feel as “typical” as possible and this involves him not being stuck doing therapy all day but also experiencing the world around him. This is good for him and our family. I understand that this may seem obvious to other people, but it wasn’t to me. It did hurt a bit when my husband said “we have two kids”, but I am grateful that he reminded me to make time for both of my kids individually, the family and also myself.

The picture below was taken while Olivia and I were out on a hike, just the two of us. I hope that when she is older she will know how much I cherish the moments when it is just her and I.