When the doctor gave the diagnosis about Max (9 months old) having moderate to sever global developmental delays, I honestly didn’t believe him. I was thinking, he just doesn’t know my son. He’s got to be wrong.
You see, he didn’t start out having issues. He was holding his head up on his own very steadily by the time he was 2 months old. And although he was skinny, he started out very small and his big brother was also on the small side (he’s not now). He was a little late in smiling, but he was still within the normal range just at the late end.
But as the days passed, I started to see what it was the doctor had been talking about. There are two huge issues that we, my husband and I, just didn’t see how much of a problem they were until the specialist pointed them out to us.
First, from the time Max was born, it always seemed like he just wanted to walk. It was cute, sometimes annoying (especially when you’re trying to get him to sit), but I just kind of thought it was one of his own little quirks. Little did I know, this desire to stand/walk all the time is not that. He’s arching his back! I always thought that when kids arched their back because it was a problem, meant that their backs were really arched (like trying to do a back bend or like when my older son would have a meltdown and not want to go in his car seat). Max didn’t really lean back, he just stood straight. BUT that stiffness is a tell-tale sign that something is wrong. It is very indicative of Cerebral Palsy (brain damage that affects motor skills). So here I thought my little baby was just trying to keep up with his big brother. Instead he has brain damage. WHOA! What?
Will Max ever be able to walk? We have no way of knowing at this point. The only thing we can do is put him in therapy and see how it goes.
Second big issue: The feeding thing – or should I say lack of eating and babbling. Max always seemed interested in food, but whenever you would try to feed him he was like a little ninja and would dodge the spoon. And if you managed to get a spoonful in his mouth, it was immediately out. Turns out this is a common thing for babies with Cerebral Palsy (CP). You see, children with moderate to sever CP have issues with the muscles in their mouths. The eating this is a problem but there are solutions. The real problem is his babbling. You’re probably thinking isn’t it a good thing that Max is babbling? Yes, except that he isn’t babbling correctly. He makes lots of noises with different sounds, which we thought was babbling. But its not real babbling… its just noise. Real babbling involves making sounds with syllables used in real words, like “bababa”, “dadada”, “mamama”, “nanana”, etc. These little phrases are the precursor to language. Without them language is not possible.
Will Max ever talk? The prognosis is not good at this point. We are hoping that with therapy that will change.
So how did I handle all of this as I realized that what the doctor told us is real? Lots and lots of crying. And more crying. And more crying. Crying while I was driving, crying while I took a shower, crying while I went to the bathroom. I tried my best not to cry around my toddler but sometimes I just couldn’t help it. Milan would ask me why I was crying, and it would make me cry even more.
No one gets pregnant hoping and dreaming about having a child with special needs. But then that is the reality that some of us end up with. Words cannot really describe how you feel when the realization of what is happening starts to hit you. Anger, guilt, overwhelming sadness.
You would think that the kind words of others would help, but for me, I felt like such a fraud every time someone told me that Max was lucky to have a mom like me. I kept thinking, I sure have them fooled. You see, when I started understanding the reality of what life was going to be like, I started to question whether or not having Max was even the right decision. As a mom, it was heart wrenching to realize that I even questioned it. I love my son incredibly much and couldn’t even believe that I was having these thoughts. But I did, so I felt even more guilty. And those kind words from others actually hurt.
Thank goodness for the internet, because I was able to research and research so I didn’t feel so helpless. I was lucky to come across a video on YouTube about a woman with severe CP. The mother talked about how she cried for a couple of days then she realized that her daughter was the same smiley daughter she was before she got the diagnosis. In that moment, I started to feel a shift in my thinking.
Once again I started to look at my son for the wonderful gift that he is – special needs and all.
If you are not aware of this, my youngest son Max has some major developmental delays. He’s not rolling over. He’s not sitting. And he’s definitely not crawling. He just started eating, like really eating not just spitting out anything you put in his mouth this week. His head shape is wonky and he can’t lift his head very well when he is on his tummy.
We’ve known something was wrong but he’s so responsive that it has been really hard to explicitly tell that he has major issues. That is until now. He’s well passed the range of normal for these milestones… and the eating thing is definitely concerning as he is quite skinny. Although, Milan (my oldest) was just as skinny so once again, not a huge red flag.
My husband’s uncle pulled a favor for us and got us in to see a doctor that is the Director, High Risk Infant Progress Clinic and Pediatric Rehabilitation at Cedar’s Sinai Hospital. Long story short, Max has been diagnosed with moderate to severe Global Developmental Delay.
He has something going on with his brain and it is more probable than not that it is Cerebral Palsy (the other options involve other diseases that are rare) considering Max’s Crazy Birth.
When my son looks at me and laughs or laughs at his big brother its hard to imagine that the moderate to severe diagnosis is true.
This is such a hard post to write because a part of me feels like if I don’t write it, its not true. But no amount of denial or hope will change the fact that my baby boy has major developmental delays.
I’ve known this for awhile. I could see it when I met up with some other mom’s with babies even younger than Max. I wanted to just think that he’s just taking his time but its more than that. We met with a specialist today and he told us that Max has moderate to severe delays.
When I was pregnant with Max I dreamed about how my boys would grow up: fighting over toys, racing to see who is fastest, who could swim the farthest … they’d grow up to be best friends. I hoped that at least one of my boys would live close so I could see my grandkids (maybe even a girl). I wondered what kind of person they would end up with.
It never occurred to me that I would be wondering if my son will even be able to walk!
When you’re pregnant, you always say I just want a healthy baby. After almost losing Max at birth and thus getting over the trauma, I thought I was done with all the craziness. But unfortunately it seems to just be the beginning.
There are so many thoughts going through my head and I really don’t know how to convey what exactly it is I’m feeling,, I just know that I’m overwhelmed and so incredibly sad. Don’t get me wrong, Max hasn’t been given a death sentence but its so hard to realize that your child is going to have to go through a lot of therapy just to be able to crawl.
I’ve been looking forward to taking both my boys snowboarding as soon as they’re old enough… now I’m just hoping that Max will be able to walk and have a “normal” life.
My mom was a chemical engineer so math and science were just a given when I was growing up. I was fortunate to be able to play with Lincoln Logs, Tinker Toys (although discontinued, luckily you can get Fiddlestix which are basically the same) and good old fashion Wood Blocks. These toys are super important for math skills and logical thinking. They allow children to play with and get a grasp on how things fit in space. Puzzles are also a great way to encourage math skills. By the way, have I told you how much I LOVE eeBoo Puzzles?
I degress… Despite the encouragement and access to spacial awareness toys I clearly remember wanting toys that appealed to my girly nature. Can’t believe it has taken this long, but someone has FINALLY created a really awesome toy for girls to begin to appreciate math and other science skills – and not just by making the boys toys pink…
Goldie Blox™ The girl inventor who loves to build
There’s a video from the inventor that explains this awesome toy.
There has never been a doubt in my mind that my son would behave and speak like his friends. I remember trying to emulate certain people growing up. Everyone does it and its part of the process of learning how you are and how you fit in the world.
I just didn’t realize that this behavior begins so early. Already I’m seeing parrot like reflexes from my child. I’m pretty lucky that the majority of the kids in his preschool are really well behaved and his best friend in school is one of the sweetest boys. Unfortunately, there are a couple of the girls in his class that have that oh-so-typical sassy attitude.
So my son has started saying things like “Can you please just leave me alone?” (There are other little phrases but I just can’t remember them off the top of my head). As long as I keep everything in perspective, its quite comical. Usually I can figure out which of his friends said what he is saying and then it makes me laugh a little bit.
All in all, the behavior is not bad, just atypical of my sweet little boy. But it is also a reminder that with each passing day, my little boy grows older and before I know it he’s going to be asking me for the keys to his car to go hang out with his friends.
For years, I’ve been actively involved in efforts that I believe in. Unfortunately, I wasn’t able to be as involved as I’d like now that I have two kids and I’ve been working so much (both are very good reasons that I’m thankful for). This blog isn’t meant to be a political platform and I wouldn’t want to think that I was imposing my beliefs on my readers so I did not post these past two weeks.
But now, the election is over and I can get back to writing again.
With Christmas around the corner and what seems to be an endless line up of birthday parties I thought it was appropriate to write up a list of some of the best gifts for toddlers and the best part… they’re all under $25 and most are under $10!
eeBoo Tell Me a Story – These cards are by far my favorite of favorites. Each set comes with 36 flash cards with really interesting pictures. The idea is to make up a story based off the pictures. We received the Circus Animal’s Adventure set as a gift and we’re slowly adding in all the other sets including the Fairy Tale Mix up, Mystery in the Forest, Little Robot’s Mission and Animal Village (not sure why but Animal Village is more expensive then the others). To be honest, I’m not crazy about the circus so I wasn’t overly excited to start “reading” these stories but the pictures are so much fun. And its been great to see how my son’s storytelling skills have expanded. Can’t recommend these enough.
Sandwich cutters – Sometimes it is like pulling teeth when trying to get my son to eat his food. Luckily, sandwich cutters make eating fun. There are tons of them out there and some are better than others. We just use regular cookie cutters. I found a 101-Piece Cookie Cutter Set that usually goes for less than $15 – the same price as some of the fancier sets. Now not all of the cookie cutters will work with sandwich bread and in fact we split up our set and use some of them with our play dough. We almost never use the DynoBytes set (it was only $5 so not too upset) because the bread we get is too small. So I like the cookie cutters better. Another added bonus for the cookie cutter set… We use them for cutting cheese slices into shapes and put them on crackers, too! All of them are a bit difficult to get through the bread sometimes although its more about patience than brawn.
Bathtime – Color My Bath! tablets are another one of our favorites. We’ve been using these since Milan was about 2. Bath time is fun. Its even better with color! Pair these tablets with some water guns or some Squirt and Float Toys and the fun just doesn’t stop (well at least until little fingers and toes get all pruned)!
Drawing – I don’t know about you, but I’m kind of terrified to leave my toddler alone with crayons. That is until I discovered Crayola 8ct Dry Erase Crayons! I picked up a set of them and found a super cheap dry erase board at Staples (during back to school) and it has been a wonderful addition to our household. The large size are perfect for my son’s developing art skills. The board and the crayons stay out all the time. I even use the set to mark the dates on my food containers in the fridge. If you don’t want to search for both parts pick up the Crayola Dual-Sided Dry Erase Board with crayons.
In the midst of a sea of pink all for the noble cause of Breast Cancer awareness month, I wear red today. For today mark’s the 25th anniversary of the day my mommy died. She was only 41 years young with a heart of gold. Yet it was her heart that killed her. Heart disease kills more women than the top 4 cancers COMBINED! Think about all of the women you know, 1/3 of them will die from a heart attack or stroke! 1 out of 3! It is so great that there is so much awareness for breast cancer and pink is a lovely color and I wear it often. I know of several people that have been diagnosed with breast cancer. Some of them are surviving. But the sad truth is that many of those very women that beat breast cancer end up dying from a heart attack. The saddest thing is that most women don’t know the symptoms of a heart attack because they are different from heart attacks in men. Unfortunately, the movies only show the signs for men so its important to get the word out about the symptoms of a heart attack in a woman.
Signs of a Heart Attack:
Uncomfortable pressure, squeezing, fullness or pain in the center of your chest. It lasts more than a few minutes, or goes away and comes back.
Pain or discomfort in one or both arms, the back, neck, jaw or stomach.
Shortness of breath with or without chest discomfort.
Other signs such as breaking out in a cold sweat, nausea or lightheadedness.
As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting and back or jaw pain.
If you have any of these signs, don’t wait more than five minutes before calling for help. Call 9-1-1…Get to a hospital right away.
I thought about writing a heart warming piece about my mom (and in fact started to write one so you still might see one) but I felt that the memory of my mom would be better served if I could help let other women know about some of the very real facts about heart disease.