We went to the zoo last week with my parents, my sister and my nephew. It was really nice to get out and do a normal activity. But I have to admit, it brought back feelings of grief. Both my social worker and my family doctor have told me that I need to work through the seven stages of grief after receiving Oscar’s diagnosis a year and a half ago. And I have or at least I have learned to cope better.
I have worked through the “shock” of his diagnosis. I am working through “denial” although I do think there are aspects of denial that I have avoided. Maybe I am in denial about my son’s speech? Maybe I am in denial that my son’s seizures won’t come back? Maybe I am in denial about what my son’s future will look like? But I think those are thoughts that I will have for a very long time. I never got “angry“. Maybe that isn’t my personality or maybe I am not there yet? I probably “bargained” when I was busy researching stem cell treatments searching for a “cure” knowing deep down that a cure for a genetic diagnosis is impossible. I have definitely been through “depression“. I have “accepted” my son’s delays and celebrated his abilities. And we are “rebuilding” and shaping our family in a way that wasn’t planned but that is working for us today.
But grief hit me at the zoo. Why there? Everyone had such a great time, including me. But grief hit me. I don’t think that anybody was aware of this because I do my best to hide it. I am not sure if the readers of this blog or my followers on Instagram think that I have it all together or that I have “gotten over” Oscar’s diagnosis… I haven’t and I am not sure if I ever will. But I do do my best to cope with it. Somedays and some moments of somedays I cope better compared to other days and moments. The zoo was a moment.
My nephew is 5 months older than Oscar. It is impossible for me not to compare their abilities. My nephew is a perfectly typical 2 ½ year old boy who walks, runs, talks, eats and drinks independently. At the zoo Olivia was running and playing with her cousin. She had such a great time with him!! “Chase me” ….” Find me” ….” Come and look at this” she would yell to him. They giggled as they explored the zoo together. I so wish that she could also do this with Oscar.
Why was it hard watching Olivia having a great time with her cousin? Because she can’t do those things with her brother (yet). And yes, their is a 3 1/2 year age difference between my kids and I understand that at their current ages there would be limitations in their ability to play together. His delays just make those limitations that much greater. It did make me so happy to see her playing with her cousin and it did also make me feel sad because she “should be” able to also do this with Oscar. The three of them “should be” able to play together. At almost 2 years old Oscar “should be” walking, talking and playing and he’s not. I do in someways grieve the brother/sister relationship that I had dreamed of my kids having. I can’t help it! Will my kids be able to ride bikes together? I don’t know. Most families of young children don’t even think of asking themselves that question. I think of it almostevery time I see a family on a bike ride. Anyways, I can’t let those moments get to me.
Back to the zoo. Oscar was out of the stroller most of the time holding onto my fingertips as he walked or stood looking at the animals. Grandma and Pops helped him to feed the giraffe which he LOVED. We all had a great time together.
I am constantly reminded of how Oscar’s limitations change the dynamic of how our family interacts. Not in a negative way, it is just different from what I had planned. I am in “Holland” now and I am learning to be okay with that. Check out “Entry Two- Welcome to Holland”
I have chosen to share a story about a blanket. To fully appreciate the importance of this blanket, I will have to take you back to the beginning.
When Oscar was born there were “weird things” that I noticed but I was re-assured that they were normal. And of course you assume everything is normal. For example, my daughter Olivia was a big baby born at 9lbs 2oz. When I found out that I was pregnant with a boy I was terrified that he would be even bigger than Olivia. Needless to say, I was surprised when he was only 6lbs 1oz at birth. A perfectly typical weight for many children, but he was 3lbs lighter than my daughter… I found this strange. I had no difficulty breastfeeding Olivia, and I previously talked about my struggles feeding Oscar….”every child is different” I was told. So when he moved funny once, I questioned whether this was normal or not. I couldn’t remember if Olivia had done this also. But when it happened a second time, I decided to take a video and send it to my aunt who is a very well respected pediatrician.
My aunt said that we needed to take Oscar to the closest pediatric hospital (I was still ignorantly in denial that this was anything serious). So my husband and I drove an hour to the closest hospital and my friend came to stay with Olivia. From there, everything happened so fast. A few days later my son and I were transported via ambulance to the Hospital for Sick Children in Toronto for an EEG. We were only supposed to be there for the test and then return back to the other hospital.
We finished with the EEG and were walking back to the waiting room when the EEG technician ducked into a room and quickly returned giving me this beautifully quilted blanket. He obviously knew something at that moment that I didn’t know. Technicians aren’t supposed to communicate test results. But he knew, he knew it was bad. He knew that we wouldn’t be going home. He knew that I (we) needed that blanket. I will never forget his kindness.
Soon after the outpatient neurologist told me that we would be staying. A while after that the inpatient neurologist told me that Oscar’s results were “worrisome” and that we would know more in the morning. I had my son, my diaper bag, and that blanket, that’s it. I was in denial and freaked out all at the same time. I was fortunate that my cousin worked at the hospital and she sat with me long after her shift was over until my husband could join me after dropping Olivia off at my sister’s house.
This blanket has a navy blue border with Tinkerbell (from Peter Pan) all over and the other side is totally pink. Someone not knowing the history of this blanket may find the design to be a strange decor choice in my son’s room. This blanket is one of the most precious things to me. It represents the kindness of the EEG technician who knew that I needed it, but was unable to tell me why. It represents the kindness of the people who spent hours making it and donated it to The Hospital for Sick Children. For the last 18months since I have had this blanket in my possession, I have thought many times about contacting the people who made the blanket to thank them. It is one of those situations where saying “thank-you” never seemed good enough. I didn’t quite know what to say or how to say it so that they would know what it truly meant to me. I have thought about it for 18months and this week I finally had the ability to say thank you to “Project Smile Niagara” for the beautiful blanket they made and donated to the Hospital for Sick Children in Toronto.
There is empathy, kindness and compassion all around. Not everyone has those qualities, but so many do and so many people need it. Be kind.
I mentioned in one of my earlier posts that when I was a young child I was diagnosed with a rare form of ovarian cancer. Because I had this rare form of cancer, geneticists were interested in learning whether or not there may be a genetic component to this type of cancer so they asked my parents if we would do genetic testing. We did. They didn’t find a genetic component to the cancer but they discovered that I have a genetic translocation (parts of two chromosomes switched places) and this put me at a higher risk of having a child with something called Roberts Syndrome which is a rare genetic condition that can result in a very short life expectancy for the child. Anyways, it is severe and because of this, genetic testing was recommended when I became pregnant with my daughter.
We elected not to do the amniocentesis but instead to do the non-invasive prenatal testing for both of my pregnancies. Olivia’s results came back “low risk” and she has turned out to be a “typical child”. We did the same when I was pregnant with Oscar and all of the results came back “low risk” as well. We were happy and re-assured by the “low risk” result.
What I have learned is that terms like “rare” and “low risk” fails to highlight the fact that there still is some risk. I now understand this. Not that receiving a diagnosis like Oscar’s is ever expected, but having the false reassurance ahead of time that everything was “low risk” made it that much more difficult to receive… maybe?
1P36 deletion syndrome is the most common genetic deletion occurring in 1 in every 5,000- 10,000 births (wikipedia.org). My son was that 1 child in 5,000 children. There is very little evidence regarding 1P36 deletion syndrome. We were provided with one study to reference and that is primarily what I will use for this post. I will say that this article doesn’t provided strong evidence as there are only 25 children included which is a very small sample size (the number of subjects/children in the article). My only point of mentioning this is that there appears to be a large grey area with 1P36 deletion syndrome and I am assuming that this may be the same with other rare genetic disorders although I am not as familiar with them.
In regards to 1P36 deletion syndrome:
Speech: “Delayed or absent speech reported in 98% of children” (www.rarechromo.org) this means that 2% of children must have normal speech development. If my son can be that 1 in 5,000 then why can’t he also make up that 2%? Now, unfortunately, I already know that my son has delayed speech but I am strongly holding onto hope that he will be verbal.
Feeding challenges are common. Five out of twenty five (www.rarechromo.org) mothers were able to successfully breastfeed. I was not one of those “5”, but someone has to be! Despite the feeding challenges we have experienced, I would describe my son as being a successful eater because he is able to eat without the need of a NG-tube or G-tube.
Gross motor skills: “Most babies never crawl” (www.rarechromo.org). Although I am not sure what they mean when they say “most” … but my son crawls. He started crawling at around 17months, delayed for sure but he crawls!
Hearing Loss affects around 2/3 of people (www.rarechromo.org)
Heart problems occur in 44% (www.rarechromo.org)
Vision problems in 80% (www.rarechromo.org)
Seizures affect around half to 2/3 of children (www.rarechromo.org)
Of course there are many other things associated with 1P36 deletion syndrome that I have mentioned in earlier posts, but I don’t want to bore you with those details now. My objective of this post is to spread hope. Because if your child can be that 1 in 5,000 then they can also represent that “2%”. I hold onto that 2%. I have to. That is why we work everyday. That is why I sought out a naturopath and give Oscar the recommended supplements. That is why I do all of his therapies daily. That is why I am religious with my son’s hearing aids and I make sure that they are properly fitted and are working well. I know that that 2% may not come easily or naturally for my son, but if he has a chance I have to try.
Hope is scary. It still is very scary for me. I don’t think about hope often. But I do think about statistics. My past experiences have taught me how to look at statistics differently. I do now understand that if someone says “most likely he won’t” or “there is a very small chance that he will” what they are actually saying is that there is a chance. Listen for that.
Until it happened to me, I didn’t fully appreciate the stress experienced by parents of children who struggle with eating.
I was able to breastfeed Olivia without any issue. Oscar of course was different. Since the day he was born Oscar had to be supplemented with formula. I would first breastfeed and then top him up with formula after to make sure that he had had enough to eat (he had low blood sugar and was mildly jaundice at birth). I tried EVERYTHING to solely breastfeed Oscar. I saw a lactation consultant and used a “SNS” (Supplemental Nursing System), herbal supplements (fenugreek and blessed thistle), prescription medication (Domperidone), and of course pumping all along. I should mention that this was all pre-diagnosis. When things were still “normal”.
I remember I went to see the lactation consultant on a Friday and she said “you know what, you have tried everything, I think that it is okay for you to stop trying to breastfeed. If you are looking for permission to stop, I am giving you that permission. It is okay.” It had been such a struggle and I think I was looking for “permission”. I left feeling relieved. That Sunday was when everything changed and Oscar had his first seizure.
During our first inpatient hospital stay was when an Occupational Therapist noticed that Oscar was struggling with the bottle. She recommended the Dr. Brown’s bottles with the Level 1 nipple. Apparently you don’t need to burp the baby with this bottle which means that the baby doesn’t have to change positions mid-bottle and then re-orient themselves. It makes it “easier” for them to drink. He used the Level 1 nipple for over a year. Oscar then transitioned to a Level 2 and then jumped to a Level 4 nipple which is what he is currently using.
Initially, our Occupational Therapist suggested that we wait until he is sitting independently before introducing purees. He wasn’t sitting, but at 9months the Occupational Therapist felt like he had enough stability and with some extra support we introduced purees. He definitely wasn’t “eating” pureed foods, but we started exposing him to different flavours at that time. Because my son has difficulty with motor planning, she recommended that we feed him 4-5x/day. Not only was this time consuming (worth it!) but it was also very stressful because it was 4-5x/day that I would watch my son struggle to eat. Around 1 year we introduced “soft solid foods” like bananas and avocados.
Writing it down it seems like a slow, seamless transition, but we struggled!!!! I would sit and watch him purse his lips so tight to avoid anything going in his mouth. I would literally pry his mouth open to put food in. I would watch him hold food in his mouth for MINUTES, not swallowing, not spitting it out, not pulling it out with his hands, just holding it. The food would either eventually drool out, he would swallow it or I would take it out because I was worried that he would choke. I would have to repeatedly remind myself “Don’t force feed”. When your child has a low weight and you watch them not eat it is so difficult to abide by this principle. But to say it was difficult watching my son not eat, not swallow is an understatement.
Today, he eats reasonably well at some meals and not so well at other meals. He has transitioned to a primarily solid food diet, but he is funny with certain textures.
I want to share some things that I have learned along the way that I believe have helped Oscar and I am hoping that they may also be helpful for you.
Meals You Can Count On
Do you have a meal that you can count on your child eating? I have found several meals that I can count on Oscar eating. For example: Fish, macaroni and cheese, yogurt, lightly toasted bread with butter, apple sauce, cheese, crackers and there may be a few others. I make sure that Oscar has one of these “meals I can count on” every day. Purely for calories, not necessarily for nutrition. That way, I know that he will eat a decent quantity of food at at least one meal. I also want to challenge his taste buds and to vary the textures that he is exposed to. So, I like to try to do one “challenging meal” or “challenging food” item per day. Of course my preference would be that he eats an appropriate amount of food at every meal, but he doesn’t. So this is the system that I have tried that seems to be working for Oscar (at least right now).
I will also use one of these “meals I can count on” when he is tired or when we are in a different environment. For example if we go to a restaurant I will take one of these meals because I know that my son will eat. This not only allows me to have an enjoyable dinner out but more importantly allows Oscar to have a positive eating experience in a different environment. I may also use one of these meals or food items at lunch time which tends to be his most difficult meal of the day.
Distracted vs. Focused Eating
This totally depends on your child! I remember one time I had to take my son to a doctor’s appointment during mealtime. At that time he was really struggling with eating. I had a puree with me and I was trying to feed him when another family walked in and I thought “Oh, great, it’s over, he for sure won’t eat now.” So I smiled politely and turned my son away from this other family, apologizing for my rudeness but explained that my son would be otherwise too distracted to eat. When I turned him away, he happened to be facing the television and all of a sudden he started eating one bite after another. He had NEVER eaten this quickly before.
I mentioned the above to our Occupational Therapist and she said that normally she would never recommend eating in front of the television but gave me the okay to try it. I did try it again at home and he was too distracted by the television to eat! For my son, sometimes distracted eating works and sometimes it doesn’t. Now, I usually start with focused eating (no distractions other than typical mealtime conversation) if he is struggling I will sing different songs to him. My son is also obsessed with the Frozen 2 soundtrack (thanks to his 5 year old sister) so we do listen to that soundtrack during mealtime. Like I mentioned lunch seems to be difficult for Oscar because he is getting ready to nap so it tends to be a more musical meal.
I am not a nutritionist!!!! But I do believe in proper nutrition. I think that providing my kids with the proper food (fuel) is very important for optimizing their development. “Eat the rainbow” is what people say. I do find it challenging to accomplish this at every meal, but over the course of the day I ensure that my kids eat something orange, green, blue and hopefully red. This is one of the reasons why I like to make soups or my “smoothie oatmeal” (check out my instagram for the recipe @arealmomstory) it is a way that I can get many different colors into one dish. I have been known to put pureed spinach in blueberry banana pancakes (try it- you really can’t taste it). Even making a comfort food like macaroni and cheese I will add cooked chopped spinach or shredded zucchini and carrot.
I believe that by having a proper diet you can optimize a child’s ability to develop by giving them all of the proper nutrients their bodies need to succeed. I need to do everything no matter how small it may seem to give my son the best chance to be successful. Check out my instagram @arealmomstory as I will continue to post recipes that my family loves.
Since I am a believer in nutrition, I knew that when my son was being solely formula fed there had to be something that I could add to fortify his formula for brain and muscle development. I consulted with a naturopath. I am only informing you of things that were suggested for my son after consulting with first a naturopath and then sending all of the suggestions to Oscar’s neurologist to ensure that it wouldn’t interfere with his medications. Before trying anything that I have written here consult with your child’s pediatrician or specialist!!!!
The truth is, I don’t know if these things are helping Oscar. The only way to truly find out would be if I had had 2 of the exact same child and had given supplements to one and not to the other and then to wait and see if one child had faired better. This of course is impossible. So, I look at Oscar and see that he is doing much better than was expected and I think that it could be partially related to these supplements.
Anyways, here are the supplements that we give Oscar every day:
SON Formula- (for muscle development) a raw amino acid, he gets 4 crushed tablets/day diluted in his milk. We prepare his bottles every night to allow the tablets time to dissolve in his milk before giving it to him the next day.
Children’s DHA- (for brain development) now that he is bigger he gets 2mL/day (we also put this in his milk at night).
Vitamin D- He still gets 400iu of Vitamin D daily
I am not an expert or pretending to be one. I just want to share some things that seem to be working for Oscar right now. I hope that you have found this to be helpful! I just want to remind you to please consult with your child’s pediatrician or specialist before trying anything new with your child.
I caught myself buying baby shampoo the other day. It was in the cart as I walked around the grocery store. Then as I was putting it on the conveyer belt to check out I thought, “why am I buying this?”. My son is 22months old. Does he still need baby shampoo?
Recently, it seems as though people have been commenting on how much older Oscar is looking and how tall he has gotten. But he still seems so little to me. I would say that his abilities now would be comparable to when my daughter was maybe 10-12months old. He is sitting on his own, crawling, furniture walking, he is working on consistently pulling himself to stand independently. He doesn’t have any words yet, but has become increasingly vocal. He can eat many solid foods, but we haven’t tried hard solid foods yet like a raw carrot. He is independent with a sippy cup, but we still give him milk from a bottle 3 times/day and we are working on straw drinking.
There, I just caught myself again, why do I still give him milk in a bottle if he can independently drink with a sippy cup? I justify this by telling myself that with the bottle I will know exactly how much milk he is getting (he does still spill a bit with the sippy cup). Is this really a good excuse? Or should I be pulling the bottle and transitioning to solely using a sippy cup? Feeding especially has historically been such a challenge for us and quantity of intake has always been a stressor. I have developed these habits of doing things a certain way and now I am questioning whether or not they are still necessary?
Many things have been a challenge for Oscar. As a parent, when you go through a period of time when everything seems to be a struggle and finally you achieve something, it is nice to rest there for awhile. To take a break before the next challenge and struggle. I think I am “resting” now. But not for long!
Because of his abilities, I probably do think of Oscar as a 10-12 month old baby. And then I will remember that he is going to be 2 years old in October. My job as a mom is to challenge my kids and to give them every opportunity to be their best version of themselves. It is harder to do this with a special needs child. There are so many past struggles that paint how things are done today. Too much history, too much trauma.
Why am I still doing things a certain way if my child may be capable of more? I think that it is because for a second something in my day feels “easy”. I want to challenge Oscar, I want to learn what his full capabilities are. To do that, I need to only enjoy the “easy” for a second and then prepare for the next challenge.
Back to the baby shampoo, I did tell the cashier that I wouldn’t be purchasing it and left it at the register. Oscar is old enough to use the same shampoo and soap as his sister. Our next challenge is to make an Occupational Therapy appointment to discuss transition from the baby bottle.
I listen and then I execute. I do think that having a better understanding of why a treatment plan is being recommended helps to increase compliance. Education is huge. As a physiotherapist, education is a big part of my practice because I do notice that it increases that chances of a client complying with my recommendations. This is why I ask Oscar’s team a lot of questions, I want to learn and I need to understand “why”. I have never felt ashamed to ask questions.
Since receiving the “Good News” I have been thinking about why?? Why didn’t the neurologist and geneticist predict that this could be a possibility for Oscar? I don’t know why and I don’t think that they know why either. Oscar still has a lot of challenges, but he is currently far better off than what was expected of him. I don’t think that what we are doing with Oscar is so exceptional, but I do think we have done something right over the last little while and I want to break it down. Maybe it could be helpful to someone?
I used to look ahead to Oscar’s future a lot more frequently than I do now. I don’t know what changed? Is it is because I keep myself busy and don’t allow myself the time to think or maybe I have evolved and have become this person who lives in the present? Either way, I just focus on what I have to do, what exercises I need to accomplish during structured therapy and how I can maximize his exposure during any given experience. I keep it simple, it is easier for me to stay focused that way. For example, when Oscar is eating I make sure that he has an appropriate food item to practice self feeding and that his meal has good nutrition (which he may need help with). He has 2 water containers on his highchair; the Dr. Brown’s sippy cup for independent drinking and the honey-bear sippy cup for assisted straw drinking. He is offered these things at every meal providing him with a lot of opportunities for practice.
We do therapy. EVERYDAY. EVERYDAY without exception. I do what I am told to do. I think about therapy and his exposure to different stimulation constantly. For example, when we are at the beach, Oscar is “walking” the beach, he is playing in the sand, I am putting him in the water, I am pointing and labelling whatever I see or hear, he is wearing his hearing aids as long as he isn’t in the water. At the zoo, I could keep Oscar in the stroller the whole time…that would be easier, but he can’t see as well, and he already sat for awhile in the car. I do do structured therapy everyday at home, but I also make sure that he is experiencing the world around him as much as possible. This is what we have been doing for the last 17months.
Unfortunately, I can’t change Oscar’s diagnosis. All I can do is my best to provide him with every opportunity to become the best version of himself. I take this job very seriously. I know that life is busy and complicated and it is easy to become overwhelmed. I have been there!! There was a period of time when more and more things kept getting added to Oscar’s treatment plan. It just kept piling on and there wasn’t enough time in the day for me to accomplish everything that everyone wanted me to do. Me saying “I can’t” and giving up wasn’t an option so I asked each therapist to give me there top 3 exercises. I knew I could do that and it helped me focus on what was important.
Your child’s treatment plan obviously needs to work for your child, but also for you and your family. Raising a special needs child is a marathon not a sprint. I don’t want to portray myself as an expert, I am not. I am a mom raising a child with special needs and a typical child. I think that I am becoming an expert in Oscar and what I have been doing seems to be working for him. I want to continue to share what I am doing in the hopes that maybe I can help someone else.
I am not sure if I mentioned this in a previous post or not, but I went to University in Texas on a tennis scholarship. I guess you could say that I was a good tennis player, but it did not come easy to me. I was athletic, but I wouldn’t describe myself as a natural athlete and because of this, I had to work really hard. I was coachable and I listened. I still listen. This skill has served me well over my life but has become especially valuable while raising Oscar.
I listen to the medical team that my son has amassed over the last 17months and I trust them. Because I am coachable I am compliant with whatever they tell me. Now, I am not saying that you should listen blindly, I do use my critical thinking skills and I ask A LOT of questions. I think that the more questions I ask, the better I understand the complexities of Oscar and then I trust the treatment. I listen and then I execute.
I listen when the audiologist tells me to have Oscar’s hearing aids in. He wears his hearing aids without fail all day, everyday. Does he pull at them? YES! Does he throw them to the floor during meals? YES! But I consistently put them back in. Because I listened when they told us how important access to sound is for speech and cognitive development. Yes, I have to be creative with what hat he is wearing. Yes, I carry extra hearing aid batteries in my diaper bag. But I do it because I was told that it was important and I listen.
I listened when the Occupational Therapist told me that I needed to feed my son 5 times a day so that he could practice his oral motor skills. Was it easy to do this when I am also entertaining a then 4 year old and balancing many other appointments? No! Was it easy to sit 5 times a day for 30-45mins and watch my son hold food in his mouth for 5-8mins at a time and not swallow? No! Did my nutrition suffer because I was so tired of sitting at the table and planning meals for my son and daughter that I wouldn’t plan anything for myself, Yes! But I listened. I did it. Now, at almost 22months old my son eats 90% solid foods and for many meals he will eat what we eat. Now did me feeding him 5x/day help? I will never know. But I wasn’t willing to not do it.
I should suggest that if you aren’t confident in a healthcare provider ask for a second opinion. If you are unsure of a new treatment or treatment plan ask a lot of questions. For me understanding the process has helped to bring importance to treatments and better my understanding as to why we are doing them. I hope that you trust your healthcare team as I do mine and always remember that you know your child best!
I am well aware that I have the luxury of listening. I am not a single parent. I had a paid maternity leave for 18months. I am not having to trust that a childcare facility or other caregiver is doing the treatment for my child. I have the luxury to do it myself and know the quality and quantity of therapy he receives. I have a great support system around me. I have “free” healthcare which means that I am not spending a portion of my day fighting with insurance companies for coverage, this buys me time.
I understand that these privileges aren’t shared by most people but are privileges that my family has been afforded. I understand that there is never enough time in the day. But I just want to encourage you to do your best to listen and to execute what is being suggested to you. Because it may make a bit of a difference. And all of those “bits of differences” may make an appreciable change in your child’s development.
An outlier is defined as a person or thing that differs from other members of a group. I have been curious to examine this in relation to Oscar. With any diagnosis there is a spectrum of predicted outcomes; the people who do well and the people who don’t do as well. In the case of Oscar’s diagnosis, nobody seems to know why that is. There are some children who seem to only have minimal symptoms and others who experience all of the possible symptoms quite severely. Why? I want to know what causes this range in outcomes. I want to know this so that I can exploit the things that make certain people do better in order to maximize my son’s potential.
1P36 deletion syndrome means that a portion of the first chromosome is missing. To me, it would make sense to think that the larger the missing portion is, the more effected the child is….. but as far as I know, this doesn’t seem to be the case. There are children with very large deletions that seem to do well. My son’s other diagnosis is polymicrogyria (multiple, small folds in the brain) and again, they are unable to correlate the size of the abnormality with how well the child does. So what is it? If genetics or anatomy can’t explain it, what is making the difference? It leads me to believe that there are other factors contributing to why some children do better.
I have been listening to the audiobook “The Outliers” (which I do recommend). I think that I initially picked up this book to hear stories of success and how people became successful, hoping that it would give me some inspiration for Oscar. The book discusses various successful people across various professional fields and explains how it was possible for that particular person to become successful, how they became an outlier.
After receiving our “Good News” (see Entry Twelve) I have been starting to think that it is possible for Oscar to be an outlier. For him to defy the restrictions of his diagnosis. But I need more information. My objective since learning his diagnosis on January 8, 2019 has been to maximize his abilities. I don’t know what is possible for him, but nobody does for that matter.
I want to share things that I think have helped Oscar’s development so far. The first thing I want to discuss is where we live and why this matters. We live in Canada. I truly think that this has made an enormous impact on Oscar’s development. Why? I took 18months of paid maternity leave with my son. Our government recognizes how important it is that a parent is home with their child. We were so busy with Oscar (and I know that every family is who is raising a special needs child) and I recognize how fortunate we are to have been able to prioritize Oscar’s health and therapies without worrying about work.
Secondly, we live in a small town 2 hours north of Toronto, Canada. Toronto happens to be home to one of the best children’s hospitals in the entire world, The Hospital for Sick Children. If a miracle can happen, I believe that it can happen there. Not only is Oscar a patient at one of the best hospitals in the entire world, but it is also free for us to access it. This means that I am not spending countless hours on the phone with insurance companies fighting to get bills paid, or worrying how much a test or treatment is going to cost, or wanting to leave the hospital a day early for fear I can’t pay the bill. I know that these are worries shared by many. I have many worries, but one of the worries I don’t have is how will I be able to pay for this?
I am not meaning for this to come across as a political post. I am just stating things that I believe have helped my son and my family over the last 17months. My plan is to make this topic a bit of a series within my blog so that I can focus on each “category” of development. I am always very interested in any comments but especially for this series. I want to learn what things you have found worked for your child so that I can try them with Oscar. My hope with this series is to create a space where we can share knowledge. So please share!!
Is accepting good news hard for anyone else? It still is for me. It is weird. I think that from the outside looking in it is difficult to understand why accepting good news is tough. “Celebrate all the wins” is what people have told me. I did celebrate a “win” once and I got crushed by it 2 months later. It was devastating. So I have protected myself by never celebrating and therefore I can never be crushed.
My son had a really rough first year of life between the seizures and receiving his genetic diagnosis and then through last winter he had pneumonia several times and was hospitalized for bronchiolitis. More trips to the ER than I can remember, 3 ambulance rides and 3 inpatient hospitalizations. But, despite all of that, my son has been steadily making gains. He is developmentally delayed, but he continues to make slow, steady improvements. He is doing better than what was expected. But I still find it hard to “celebrate”. I need to learn how… We did receive good news yesterday and I wanted to share it.
My son has “extensive” (as described by neurology) polymicrogyria (extra folds in the brain) in his bilateral frontal lobes. This was caused by a genetic disorder called 1P36deletion syndrome (my son is missing a portion of his first chromosome). These diagnoses have caused a host of issues for my son; seizures, developmental delays (cognitive, social, gross and fine motor as well as speech delays), hearing loss and heart defects (minor and haven’t caused any functional issues to-date). We have been told since he was diagnosed that his condition is “worrisome” and seizure control can be very challenging and that many children are resistant to medication.
He is now over a year seizure free. He had an EEG (electroencephalogram used to assess the electrical activity in the brain) yesterday and then when we met with neurology after they told us that his EEG was “close to normal”. WHAT!!?? A mix of emotions came over me. That is the first time I have ever heard “close to normal” and my son’s name in the same sentence. This gave me an opening to feel hopeful…. very scary. I don’t want to be crushed again.
I asked neurology, “how can you explain that?” and he responded, “I can’t”. I don’t understand, how can the MRI of his brain represent something that is “extensive” and “worrisome” and then his EEG can be “close to normal”? He said, “I don’t know, it surprised me too”. I cried. I was overwhelmed with hope and with the fear of hope. Has anyone else felt this? I have grieved enough and will continue to grieve certain things over the years. But I think I am going to try to accept this good news. I think I am ready.
To be honest, I would have to look in Olivia’s baby book to remember when she said “mama” for the first time. But I do remember when Oscar said it. He said “mama” at 11months old. He called “mama” first thing in the morning to be picked up from his crib. He even started saying “uma” for our dog Suma.
Our speech therapist was baffled by this. His hearing age was technically that of a 7month old (because at 4months old he got his hearing aids and proper access to sound). I thought that Oscar had beaten the odds. Unfortunately, I was wrong. I don’t know what happened. But he stopped. And he hasn’t said it since.
Oscar is now 21months old. It has been 10 months since I heard him call my name. And I am sad because I don’t know if I will hear him say it again. Or “Papa” or “I love you” or “goodnight” or any of the other sayings that I took for granted with Olivia. I do wonder what his little voice will sound like, and then in my weak moments I wonder if I will ever get the chance to hear it.
So many moms or parents know what this feels like. And likewise so many moms or parents take for granted all of the “normal” things that their children are able to do as I did with Olivia.
Now with speech therapy we are working with a “big mack” which essentially is a large button that you can record a phrase and teach your child that they can request something by pushing the button. My goal has always been that Oscar would be verbal and I HATE that I have to use the big mack. The transition is from the big mack to a four button version of the same thing and then I guess eventually (should he need it) to some type of computer.
By November 2019 Oscar had become relatively silent. There were many days that I would tell my husband that Oscar hadn’t made a noise, not even a laugh or a cry. When I say silent I truly mean not a sound. Neurology wondered if he had had a seizure that had effected language production? We hadn’t witnessed any seizure activity. Our speech therapist encouraged us to make a big celebration of any little noise that he made. We did this. We still do this.
At every sound we celebrate. This means that if my daughter is in the middle of telling us a story and Oscar makes a noise I turn to Oscar and make a big celebration, ignoring Olivia. Once again Olivia is noticeably put in second place. But what is the other option? I want my son to talk, I want to encourage any vocalization that he makes. And many times this comes at Olivia’s expense and it eats me up inside.
Oscar is vocalizing more now. He shrieks to request or protest something, he laughs and he cries. I don’t know what the future holds for him, but I know that I have to try to maximize his abilities. And this is why we work at it EVERYDAY. Hope is a scary thing. But I do have hope that he will speak one day. But for right now I will settle for “mama”.