They Have It Easier

If you don’t already know, Sophia has a rare condition called Prader-Willi Syndrome. It’s a missing chromosome that affects mostly her hypothalamus, which controls a lot of her basic life functions – hunger, thirst, temperature regulation, growth, hormones, etc.

She was diagnosed early on so I have been managing her challenges for nearly 6 years now, from therapy, to special education, to special doctors, to behaviors, to helping her get through the day sometimes. It could be worse, but it definitely isn’t easy. I initially joined several groups to help myself get through the challenges, because in order to survive something like his, you need a strong support system. And who can be better support than people who have been there, or are going through it? I joined a lot of Facebook groups, and I became heavily ingrained in the Facebook PWS world. And I still am. I still read posts for advice and guidance. But sometimes I do come across posts that are just maddening.

Sometimes I come across posts that criticize the parents of the younger children of being too hopeful and having too much of a positive attitude towards the condition. Look, I get it. It’s an ugly condition to have. Nobody could ever think that a condition that makes you feel hungry ALL. THE. TIME. is a good one to have. I certainly don’t. But if we aren’t allowed to have hope and think positive, how are we supposed to survive this?

I need to believe my daughter has a chance in this world even if I need to be prepared that she won’t.

I need to believe that one day, the hunger will go away even if I need to be prepared that it won’t.

I need to have hope, or I might as well drive my entire family off a bridge right now.

And what is absolutely baffling to me is that sometimes we’re accused of being privileged because we have happy families and have money.

Let me stop you right there. I walked away from a very long-term relationship with nothing but my kids, and I was adamant on taking the car. I had no money, no job, an unfinished education because I had to make decisions to sacrifice all that to make sure my daughter stayed healthy.

I WAS a single mom. And I worked hard to rebuild a life for me and my kids. It was a blessing that I found someone in the process who loves my children as if they were his own, but honey, don’t be fooled, everything I have right now came from having to start from the bottom all over again, and working hard to earn money, respect, and my life back.

I did NOT have money, and I still DON’T have money. I am in debt, trying to provide for my family, and I make sacrifices ALL the time to make sure my kids have what they need, and pursue their dreams, and live comfortably.

My positive attitude does NOT come from privilege, but rather lack thereof, and it is a conscious decision I make every single day to make the most of everything I have, and work on getting what I don’t and knowing that everything I have is worth way more than everything I will never have. My positive is a decision.

Do NOT accuse me of being privileged.

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How do I fit in?

I haven’t visited my own blog in nearly two years. Life has gotten so hectic between family, work, health, and just all around, everything. But I have put writing on the back burner for way too long. It has always been such a great release for me, and it’s time to revisit this blog.

I have been so stressed out with Sophia’s new journey in public elementary school. I’ve done meeting after meeting, and I’m just struggling to find the right placement for her. I’m not sure where she belongs. I’m not even sure what it means TO belong anymore, quite frankly.

I just know she’s not in the right place right now. It’s hard because, at the end of the day, I’m trying to work through the politics of “social conventions.” I recently sat down with her team at school and discussed her IEP and her progress and we were talking about her placement. Should she be in a general education classroom with a para (which is where she is right now) or should she be in a special education classroom with limited para services?

There was a debate going around that table. Why should she be in a general education classroom if she’s obviously falling behind? Well, because she’s not THAT far behind, and usually it’s a clear cut decision. But she’s that borderline child who just needs that extra push and she has the potential. But at the same time, she performs better in smaller group settings. But at the same time, the smaller classes have so many kids with extreme behavioral habits that might rub off on her. But at the same time, her behavioral habits are hindering the progress of the rest of the class?

What am I supposed to do?

Shortly after the meeting, I started to uncover some, perhaps, deeper underlying issues.

She and her teacher just are NOT  a good fit for each other. 

Perhaps, her teacher is a great teacher for all the other students in the class. But she is CERTAINLY not the right teacher for my daughter. Her teacher is constantly complaining about Sophia’s behaviors (which isn’t aggressive, more regressive). She has her moments where she can excel, but she also has her moments where she can regress and pull into a shell and ignore everyone around her. I understand that is an extremely frustrating behavior for an overworked teacher to be dealing with in her classroom when they are 20 something other students to be teaching. But at the same time, I’m realizing that this teacher simply doesn’t have the patience to handle someone with special needs.

Sophia has a developmental disability, and yes, an intellectual disability. Because of her condition she has OCD; she doesn’t react well to negative teaching approaches; she operates a little differently from her peers; she processes a little differently from her peers. Bottom line: she’s different.

But we’re all so focused on figuring out how she can fit in… but… she’s NOT going to. She’s not supposed to. She’s different. And you know what? As her mom, I’m okay with that.

She’s going to need more time than her peers. She’s more likely to give up on tasks because she feels like she is slower than her peers. She’s such a perfectionist that it frustrates her when she can’t get things right, so then she just outright refuses to do it.

But instead of using positive reinforcement, and encouraging her she CAN do it, she’s getting in trouble because she did things incorrectly. She’s being told, “If you don’t want to learn, you should just stay home.”

… How is this constructive?

Now I know exactly why she has been asking to stay home from school. Now I know why she has gone from that little girl who LOVES school to that little girl who wants to stay home.

Obviously a conversation needs to be had with the teacher. I find it completely unacceptable for my child to be dealing with this type of negativity from an authoritative figure who is supposed to encourage and motivate her.

Now I just need to find that healthy balance of protective mama bear and well-spoken, mature woman that needs to function in society.

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Lost: Two Childhoods

On Sunday, we took the boys to the schoolyard nearby to learn how to ride their bikes. I’ve had the bikes in storage for nearly two years now, and finally pulled them out and decided since I have help now, maybe it’s time they learned how to ride their bikes.

So, the boyfriend and I walked all three kids to the schoolyard, I provided verbal guidance as I watched him tail behind the boys teaching them how to ride. It was all I could do since I had to stay with Sophia.

I watched as they put their feet to the pedal, and would immediately plant it back on the ground because they’ve lost balance, but they never gave up. They kept going.

Pedal. Floor. Pedal. Floor. Pedal. Floor. Pedal. Floor.

I watched Donovan try to ride alone as the boyfriend helped Jordan, and so did a little boy. The little boy must have been about 5 years old. He sat on his bike, and followed Donovan around. I noticed the little boy was saying something to Donovan. I didn’t move from where I was standing, but I tried to focus on hearing what the kid was saying. I couldn’t catch it all, but I heard just enough to catch, “… and I’m so much smaller than you. Look how fast I can go.”

And he sped ahead to show off. I saw a look of defeat in Donovan’s eyes. He was disappointed. He was ashamed. He was embarrassed.

And my heart broke.

I couldn’t get mad at the little boy. He was just a little boy. I know he didn’t say it maliciously, but that stung.

He was right. They are just learning how to ride their bikes when kids half their age already know how to ride bikes…

It’s sad because it really brings to light how much of their childhood has already been lost. While 5-year-olds were out learning how to ride their bikes and do fun kid things, they were watching their sister struggle to learn how to do things babies her age did naturally. While 5-year-olds were excited about holidays and birthdays, they spent theirs wondering if Sophia was going to be home or in the hospital. While 5-year-olds were going on family vacations, they accompanied me and Sophia to medical appointments. Vacations were our trips to medical conferences or specialized doctors in different states. While 5-year-olds were wishing for new toys and fun games, they were just wishing for her health to improve.

They missed out on a couple of years of just being kids. It makes me proud to see how much more mature they are than their peers, but it makes me so sad to know it was at the expense of their childhood.

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This Time Last year…

Today New York City hosted its 4th annual One Small Step Walk for Prader-Willi Syndrome. This is our third year attending. By far, the best walk we’ve had so far. The weather was beautiful compared to the rainy days the past two years. Everything just went a lot smoother than they did previous years.

But the biggest thing for me, personally, was this. This time last year, I was still wondering if Sophia was ever going to start walking. Everyone told me she would, but it was just taking forever for the day to come, I couldn’t see it.

And look at her this year joining in on the Zumba session. That’s my girl!

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Back to School Craze

Change is good. I am happy with where my life is headed right now. Sophia is old enough to start CPSE. She’s going to a great school. The boys are continuing on with their academic career. I got a new job. I love my students and I am excited for the new school year. I am taking on more responsibilities with the PWS organizations. This is all GREAT change. 

But, I have to say, maybe it’s a lot happening all at once. It’s taking me a little longer than I had hoped to adjust to it all. 

Now, you get to read all about the insanity that is my life. I like to do things in advance. So, a couple of weeks ago, as soon as I got hired, I started looking for a babysitter. Because I realized 9/3 (today) I would be working, and I didn’t have anyone to watch the kids. So, I found one and hired her for the full day. Well, turns out  my work schedule was not a full day. So, I texted her to ask her if she still thought it was worth her time, and she never replied. So, of course, in the midst of my parent orientation day when I have 18 students with parents, siblings, grandparents in my classroom, I get a million phone calls and texts (which I did not realize until an hour later after everyone had left). As it turns out, the babysitter wasn’t ignoring my texts, she never got them. 

Awkward. I had the babysitter and my neighbor from upstairs wondering what the other was doing there. Of course, the babysitter is upset with me since she doesn’t exactly live close by. So, instead of paying $50 for the day, I ended up paying $90 because I’m a good person and I reimbursed her $40 for her inconvenience. 

I come home to gather everything for the kids to go to school tomorrow and I realized…….. I forgot to get Sophia’s medical form filled out. She cannot start school without her medical form. Well, her pediatrician was completely booked. So, then I went on a ped hunt to find someone who can see her today and fill out the form today. No worries. I found one. But I will be going back to our regular pediatrician. Very quickly. Very, very quickly. 

I realized I forgot to allocate time for laundry. So, I will be living it up this week and paying someone to do my laundry. 
I am now staying up late labeling school supplies… or procrastinating and blogging instead. 
I am a complete mess because I won’t get to put Sophia on the bus tomorrow. 
I have to figure out how to drop Donovan off in the hectic school yard, and still make it to work on time to greet my work babies. 

I should get back to work. These supplies aren’t going to label themselves!! (But, they should)

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Follow the Schedule

This past week, I have had to find babysitters for the kids while I did my training at work. On Tuesday, my mom stayed home with the kids. On Wednesday, a friend drove out all the way from Queens to watch them. And today and tomorrow, I asked my neighbor upstairs.

I always leave a food schedule indicating what should be eaten and at what time.

Today, when I got home, my neighbor was giving me a detailed recap of the day, especially since I was unexpectedly asked to stay for a full day instead of my half-day training.

She laughed and told me, “it was hilarious. You put on the schedule to have peanut butter and jelly sandwiches at 11:30, so, they started making their sandwiches at 11:15, and then just sat at the table, staring at the clock, watching the minute hand… and eventually, they said, ‘oh! It’s 11:30! We can eat now!’ Then they put Sophia in her chair, and then they ate.”

How awesome are these boys?

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Life of a Working Parent

Today was my first day working again after 3+ years of, I guess, maternity leave. I was supposed to be there at 8:30, but aimed for 8. So, I woke up at 6, got ready for work, fed the kids, and was out the door by 7:15. I parked and got to work by 7:35. Sat in the car for a bit and went inside at 7:45. 

It was an awesome day working with all the little ones in the school. I came home with snot and spit all over my shirt, but it was definitely worth it. 

Then, I came home to a big mess, but warm welcomes–hugs and smiles and kisses, Sophia in a backwards pull-up, you know, the works. I respond to a few emails, do a little bit of reading for work, and then decide to clean the floors. My mop breaks… so I go old school, get on my hands and knees with a towel. Finally clean the entire floor… and Donovan decides it would be an awesome idea to pour out all the shells he collected from the beach… with sand. Floor was covered in sand… and I had to do it again. Fun times! So much for, “No, I promise. They will stay in the bag. Always.” 

At least grandma took care of dinner. 

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