Category: Uncategorized

It seems like a lot has changed in just the past few weeks. Everybody in the house has something new going on, and it’s (mostly) all good!

I received so many supportive messages from all of you after my post about dealing with chronic pain for the past 20 years. Thank you everyone! If I had just ignored all those doctors who told me “pain after an injury is expected, you just have to deal with it,” it probably wouldn’t have gotten this bad. That said, I’ve started with what seemed like the easiest “alternative medicine” that was suggested to me (always listen to your mother, guys) – CBD oil. I haven’t even been on it for a week yet, so I’m hesitant to give a final verdict, but it seems promising so far. I’m still adjusting my dosage, but will keep you posted. Once I know what this can do for me, I’ll try adding in some other treatments that were suggested to me. My goal has changed from “appear normal” to “feel normal,” and I’m excited to see if I can actually achieve it.

Aaron was moved into an accelerated management training program at work, and got some kind of award from corporate for being awesome (“It’s a major award!”).

Madeline was briefly a unicorn farmer, but then she found out she had a baby on the way (“I’ve got a baby coming!”) and had to give up on her dreams of breeding a magical rainbow unicorn to raise the child. Just kidding. She gave me the baby, said “You’re the babysitter now,” and walked out on me.

She also decided she wants to learn an instrument. I thought I’d let her try out music lessons to see what she thinks, since her last dance class is this week. And, since I’m having a beast of a time getting anyone other than someone of questionable skill level to call or email me back, I just decided to start her on a piano book for preschoolers and see where that takes us. Now when she yells that she wants me to get out of bed at 4am and I holler at her to be quiet, she can yell “FORTE FORTE FORTE!” Winning. I mean her. She’s winning. I hate it.

Emmett is making a lot of progress in school! It’s exciting to see how he’s doing things now with relative ease that he’s struggled to do for the past 3 years of school. Last year, he couldn’t draw two lines that intersect (or, honestly, anything other than something that he told us was supposed to be a circle). Understanding how to cross lines is apparently something that uses different parts of your brain, and it just wasn’t happening for him. We’ve had a lot of snow days in the past couple of weeks, and he was bored cooped up in the house, so he assigned himself some homework and worked on it pretty diligently. He was so focused on his tracing book that he didn’t want to play or watch TV during his self-assigned homework time. “Leave me alone, I’m busy right now!” He didn’t even do it to show anybody else; he just wanted to work. I’m so proud of him!

Finally, I’ve been experimenting with some new hobbies. I decided to try my hand at making jewelry! As it turns out, I’m a little too particular in the types of earrings and necklaces that I like, and have a hard time finding things that I want to wear. If anyone else shares my jewelry sense, check out the shop to see my favorites! Also, you may notice that I’ve cleaned up the shop a bit to make it easier to find what you’re looking for. And there’s more to come! Assuming, of course, that my ongoing experiments turn out as I’m hoping. Failure is just an opportunity to improve!

So, again, thank you everyone for your support. Everything’s looking up, and I’m excited to see how much higher we can go!

I’ve seen a story circulating on Facebook recently about a couple with Down syndrome celebrating their 25th wedding anniversary. It’s supposed to be a “feel good” story that sends the message “Down syndrome people – they’re just like us!”

You’ve probably seen these stories too. A girl with Down syndrome is crowned homecoming queen. A boy with Down syndrome got asked to prom. This cafe employs people with Down syndrome and pays them, like with actual money. These stories are all meant to make people feel good. I know lots of people who share these news stories on social media thinking it’s a positive thing, but I just see them and think “Look at how advanced our society is! We’re treating these genetic abnormalities like real people!”

These stories are not “feel-good” to me. It shouldn’t be newsworthy if someone like my son gets asked to prom. “Who’d ask one of those boys to prom? That sweet girl is so charitable. Let’s all, as a country, celebrate her courage to ask one of those kids to a school dance.” It shouldn’t be newsworthy that someone like my son finds someone to love and gets married. It shouldn’t be newsworthy if someone like my son gets a job – one where he makes *gasp* actual money.

I know that on some level it IS encouraging to see these stories. If you don’t know anyone with Down syndrome and have only seen people who were raised in a time where it was routine to ship them off to an “institution” to be raised, then you might not realize that they’re actual people just like everyone else. So yes, I’m glad that stories are making the rounds that show kids with Down syndrome can have the same life experiences of anyone else. New parents might like to see these “encouraging” examples about how their children will be “normal.” But let’s stop pretending that we’re being inclusive and supportive when we share these stories. Just think for a minute about how sad it really is that it’s considered newsworthy that a high school girl is on a basketball team.

I might be alone on this one. I know these stories are popular, and are shared by Down syndrome advocates as well. It just makes me sad that anyone would think my son is “special” for being just like everyone else.

The problem with chronic pain, apart from the fact that you’re chronically in pain, is that it’s invisible to everyone else. When I was 8, I fell off my bike and hit the ground, hard, face first. Teeth were lost and/or broken, and I broke my jaw. So that was fun. After everything healed back up, I was good as new. Well, mostly. Winter was problematic. Whenever my face or ears got too cold my jaw would get sore.

As time went on, that cold-related pain became worse. By the time I was in high school, just walking to the bus stop in winter left me in pain for several hours without taking tylenol or ibuprofen (I tried to keep one or the other with me whenever possible). By this time, the pain was no longer restricted to my jaw, but was spreading into my neck and causing headaches. In college, it started affecting me around the clock with no apparent triggers. I would wake up in the middle of the night in so much pain that I couldn’t fall back asleep. Heating pads, tylenol and ibuprofen helped, but it took an hour or two before I’d be able to sleep again. I finally went to see someone about it and they put me on muscle relaxers and anti-inflammatory meds and sent me to physical therapy.

Medication and physical therapy helped, but not completely. I stayed on the medication for several years, but then had to stop taking them when we decided to try for a baby. The pain was still there, but tylenol and heating pads kept it at bay for the most part. At least to the point where I could ignore it. During this time, the pain spread to my shoulders and back.

After Madeline was born, I started getting headaches that were more severe. To the point where I had difficulty focusing my eyes, and had a hard time thinking about anything other than the pain. I tried going to the chiropractor, but it didn’t seem to help so I stopped. Because I had two young children, I didn’t feel like I had much time to devote to self-care, so I just let it go and learned to ignore it. Sure, I had frequent headaches that made me easily irritated and quick to snap at my kids. Yeah, I had pain in my neck that would make me want to cry if I gave in for a moment and thought about it (which I avoided at all costs). I was an expert at pretending that everything was fine, to the point where “everything hurts” just became the norm. At some point I went back on muscle relaxers, which helped a bit, but not enough to really matter.

About a year ago, it got to the point where the pain (along with other things in my life) caused me to realize that something needed to change. I started one (later two) antidepressants, and started seeing a therapist. I decided at that point that self-care was something I couldn’t keep ignoring. I made several changes in my life (dropping down to part-time at work, starting this blog, starting the shop, and teaching with VIPKID). I also started to see a chiropractor on a regular basis. They do this examination thing beforehand where they poke around your spine and tell you what areas need adjusting. He could tell that it was starting on the right side of my face (correct), which was tensing muscles that caused problems on the left side of my neck (also correct), which was altering the way I held my body and causing problems with my right hip (yup).

The chiropractor actually helped! But only for about 3 or 4 days after each appointment. I did this for a few months, but it wasn’t really sustainable. At some point, you’re supposed to decrease the frequency of your visits, but I never really got to that point. Plus, at $50 per visit after insurance, it wasn’t exactly sustainable. I decided to try physical therapy again to see if that helped. Again, it helped a bit, but not enough to make it worth it. And now I’m stuck. I can’t find anything that will “fix” me, and the pain keeps getting worse. As I write this, I’ve got an ocular migraine (a recent development within the last couple of years) that is causing kind of a brain fog (sorry for any rambling here), a moderate headache, along with vision problems. I’m having trouble focusing on the computer screen, and have blind spots across my vision along with weird stars and wavy lines that are very distracting and making it hard to concentrate. It’ll go away within an hour if it’s anything like the ones before it.

All this, and from the outside it looks like there’s nothing wrong with me. I’ve been snapping at the kids and my husband all day, so I’m seen as “crabby,” but none of my medication is helping with the pain in my head, neck or back. There’s only so much I can take before I start taking it out on the people around me. Sorry, guys.

So what’s the point of all this? I don’t know. It’s hard to focus on anything else at the moment, and I needed to tell someone. Maybe I’m trying to say that you should be nice to people, even if they’re mean to you, because you don’t know what’s going on with them. Maybe I’m saying that you should tell your 8 year old to stop riding her bike like an idiot, because she might be paying for it for the rest of her life. Maybe I’m just writing this so I can focus on rambling instead of thinking about how everything hurts.

Some days I feel like I’m doing everything wrong. Today is not one of those days. Well, this morning anyway. There’s still a lot of day left to go wrong.

Madeline has been sick with a cold (or something – whatever it is, it’s not pleasant), and I think I’m getting it too. Not cool. So while she was resting and watching a movie, I was outside shoveling to keep ahead of it (the wind chill is expected to be -40 tomorrow, and there’s no way I’m shoveling I’m that), and when I came inside I was cold. Obviously. I got a tissue to blow my nose, and Madeline, in an adorable display of maternal affection, felt my face and, in a tiny voice laced with concern, whispered “You were out in the winter for so long. I think I need to take your temperature.” She found the thermometer, put it under my arm (like I do for her), and waited for the beep. My temperature was low, so she grabbed me a blanket. As she looked me in the eyes to assess my comfort level, she patted my arm gently and said, “You’re going to be ok, Mom.” If that doesn’t just melt a person, I don’t know what does.

Then we had a tea party using the good China (my old porcelain set, complete with homemade tiny table runner. Are you, like me, suddenly hit with a wave of ’90s nostalgia?). Our “tea” was my own hot cocoa recipe, because it’s oh so much better than a store bought mix. She’s very pleased about the whole thing.

Interested in making your own cocoa? Here’s my recipe, but feel free to tweak it to fit your own taste.

2 c milk
1 tbsp cocoa powder
2 tbsp sugar
1/8 tsp cinnamon
pinch of salt

I make mine on the stove. Just whisk until it’s hot. Only takes a couple of minutes, and it’s so worth it. Can you make it in the microwave? I don’t know! Give it a try! And always remember the most important rule of a tea party – pinkies out!

Parenting is hard. Like, really hard. Some days you’re just happy that everyone is still alive at the end of the day. I’m not proud that I’m a parent who yells, but sometimes the anger and frustration of dealing with two children who don’t listen gets to be too much. And this little girl is the most pedantic child I’ve ever met. She will correct your grammar, pronunciation or word choice even when you’re yelling at her. It’s infuriating (and hilarious, but don’t tell her that).

But yelling will only get you so far (and, in my case, nowhere – but it feels necessary in the moment). Because I don’t actually LIKE being this kind of parent, I’ve decided to change. Sometimes, you forget that change is an option. We spend so much time wishing OTHER people would change that we forget that we are also capable of it. And, in fact, changing yourself is something you can actually do. It’s much harder (if not impossible) to change other people. “Be the change you wish to see,” and all that.

So please, wish me luck as I attempt to change my own knee-jerk reactions to the antics of my children. Going forward, I want to help my children learn from their mistakes, rather than being mad that I have another mess to clean up. I want to let my children make more of their own choices, and allow them deal with and learn from the consequences of those choices.

I need to remember that the goal of parenting isn’t to make happy, obedient children. The goal of parenting is to make happy, independent, free-thinking, problem-solving adults. It’s difficult to keep the end-game in mind when they’re grinding play dough into the carpet, but if I keep responding to their missteps with irritation and anger then they’ll learn “don’t make a mistake or you’ll make people mad.” While on the surface that seems like an ok lesson, it’s not preparing them for real life and how to deal with the consequences of their actions.

Changing oneself is always difficult, but it’s also incredibly rewarding when you succeed. Wish me luck, patience, and perseverance as I strive to turn these goblins of chaos into responsible, independent humans.

My daughter, like many young children, has a fascination with scissors. If she sees a pair, she wants one. If she has a pair, she uses them. When I give her scissors (safety scissors, obviously), I also give her paper. When she finds scissors, she cuts whatever happens to be near her. Usually her clothing. Because of this, scissors are kept either out of reach or locked up. Well, yesterday she found a pair. It would seem that I forgot that I keep scissors in the bathroom cabinet. And, because there’s a mirror in there, she cut…. her hair.

When she realized that cutting her hair meant that the hair was no longer on her head, she started wailing, “My beautiful hair!!!!!!” Fortunately, her hair is pretty crazy as it is, so it’s not super noticeable. She cut the top front pretty close to the scalp, and she cut off three or four ringlets on her right side. Now she’s crooked.  I made an appointment for this afternoon to try to even it out a little, so we’ll see how that goes.

My dad tells this story about himself as a child. Like many kids, he liked lighting matches. When his dad found out, he gave him a big jar and a box of matches. My dad’s task was to light all the matches and fill the jar. It was aptly named “the dummy jar.”

At this very moment, Madeline is holding scissors and sitting in front of a pile of fabric and paper. Her task is to fill the box with cut up paper and fabric. She thinks she’s having fun, but we’ll see how she feels about it once that box is full. If we’re lucky, she won’t want to pick up another pair of scissors for a while.

When I woke up this morning, I decided that today would be a productive day. I got up, made Emmett’s lunch, packed his backpack, got both kids breakfast, and then went in the basement to teach a couple of classes. I came back up to find Emmett eating a jar of peanut butter with a knife (butter knife – no need for panic). Madeline can get through the child locks if she’s determined and patient enough. She had also filled all of our plastic cups with water and left them scattered around the kitchen floor. She was sitting in a chair finishing off Emmett’s lunch. In her room, she had also destroyed (not eaten – just demolished) the remains of the kringle I was going to eat for breakfast. I was really looking forward to it, too.

After I got the yelling out of my system (it’s really more for my benefit than hers), I put her in a time out in her room and said she could come out when the room was clean.

Now her room is clean, so I guess that’s one thing off my to-do list. She’s currently lying on the floor, with a puzzle resting on her face, quietly chanting “Just me and my swamp, just me and my swamp, just me and my swamp.” I don’t know why, or what it means, but it feels appropriate.

I have a to-do list as long as my arm, and the overwhelming number of tasks I need to accomplish are leading me to do….nothing. So this is me, checking “blog” off the list. Also, we decorated the Christmas tree last night. We got a wonky tree that doesn’t have a straight trunk, so it always looks a little unsteady and uncomfortable. We decided that it fits right in with the rest of us. 

For real though, check out the light show that this star puts on the ceiling. Emmett about lost it when we plugged it in last night. And yes, the stars move.

And now, back to the list. Time to find the motivation to get the vomit stains out of Madeline’s carpet. Yay me!!

I know I’ve written about this before, but it bears repeating.

A family member recently posted something about how they only share the most positive aspects of their life online. Only the most flattering selfies, pictures with the mess of life carefully hidden, and only the best looking food. I’m also guilty of this. I almost never take selfies because I’m rarely pleased with the resulting image. I take pictures of my children when they’re cute or funny. I post about the crafts I’ve completed, the food I’ve made from scratch, and the funny things my children say or do. But please, know that this, while not a “lie,” is only a half-truth. My home is a disaster. I’ve started more projects than I’ll likely ever finish. Mail piles up in the mailbox because walking across the street to pick it up is a hassle. My kids are driving me insane with their constant talking and fighting.

So in the upcoming holiday season, if you’re feeling like your Christmas isn’t as perfect as mine, think again. If you feel like you should spend more time baking cookies, hand-making Christmas cards, enjoying your children’s laughter, and ringing in the New Year with a happy midnight kiss, remember this: the internet lies.

When I bake cookies, I’m yelling at the children to please, for the love of everything holy, keep your hands out of the mixer and stop trying to open the oven. When I post a picture or video of happy children playing in a clean living room, their bedrooms are disasters that practically require hazmat suits to enter. When I post about one of my delightful simmering scents that’s making the house smell like everything that’s good with the world, know that I’m doing it to cover up another smell that I can’t identify or find the source of. And for every happy moment with my children that I choose to share with the world, there are 2, 3 or 5 moments which resulted in me yelling at them to please, please, PLEASE GET THAT TOOTHBRUSH OUT OF YOUR BUTT AND STOP EATING YOUR CHAIR!!!

So remember this: nobody is really the person they post online. We’re all putting our best selves out there. So this is me, just keeping it real. You got this.

Before I start this story, I’d like to preface it by saying that while it seems like I’m complaining that the educational system has let us down and the people who we thought were there to help us really didn’t, … well… actually, I do feel like that. But it’s kind of my fault too, so I can’t be mad at anyone, which is probably the real reason why I’m so surly about the whole thing.

After I wrote this, I realized that my “short story about the importance of self-advocacy” became more of a novella. It’s important, though. Maybe it’ll be helpful to some of you.

When Emmett was born, we were taken by surprise by his diagnosis. Sure, we knew it was a possibility from a couple of markers on an ultrasound, but the odds were still very low. Our NICU doctor (an amazing man with a son of his own with Down syndrome, who told me my son was perfect) started the process of enrolling us in Wisconsin’s birth-to-3 program. All states have it (as far as I’m aware), but it can go by other names. Basically, they help with whatever you need to get your child the services he or she needs until they turn 3. Our birth-to-3 coordinator got us set up with Medicaid, would have gotten me set up with the WIC program if I hadn’t declined, and brought us therapists whenever she or we thought it would help. She also got Emmett set up with his school as he neared his third birthday. It was awesome. However, once Emmett turned 3, we were kind of kicked to the curb (at least that’s what it felt like).

Once children age out of the birth-to-3 program, they become the responsibility of the public school system (at least in terms of readily-available therapies). Obviously parents can seek out additional services if they think it would help, but it’s something you do yourself.

By nature, I am a do-it-yourself-er. If you’ve been following me or know me in person, that should be pretty obvious. I’m not one to ask for help, and I figure that if it CAN be done then I can figure it out myself. I’m not into “support groups” (not much of a people person in general), and I try, whenever possible, to do my own research and to follow my instincts. I’m also a person who tends to defer to authority figures. If a professional tells me that they’re doing what’s best, and I don’t have any qualms or strong opinions of my own, I will defer to their better judgement. They are the expert, after all.

I did a lot of reading in those early years, and I sent a lot of emails. I contacted a hippotherapy facility near us to see if they thought horse riding would help with his balance and gross motor skills. They said yes, but it wasn’t covered by our insurance. I contacted the YMCA and a local special-needs therapy facility with a pool to ask about swim lessons. I wanted to see if they thought they could help us with his fear of water, and maybe water resistance could help with his poor muscle tone. One place said “we don’t do that,” and the other said “he’s too young.” I looked into music therapy, gymnastics, dance classes, and mommy-and-me everything. Every place I spoke to either said he’s too young, we don’t deal with special needs children, or it’s too expensive.

However, when Emmett started Early Childhood at our local elementary school at age 3, it became clear that I was out of my depth and should just leave it to the school. He was getting physical, occupational, and speech therapy several days per week. His teacher was getting him to communicate using a picture board. All of that was great, and it seemed like we were doing everything we could for Emmett. I asked his teacher and therapists if there was anything else I could or should do with him at home, and they basically said, “Don’t worry, we have it covered here.” However, once he turned 4 and became eligible for the 4K program, his teacher told us he wasn’t ready. He wouldn’t fit in. He couldn’t go to 4K, and should stay in Early Childhood another year. This was not a question from her, it was a statement. All the therapists in our meeting nodded in approval. They know best.

The following year, we began talking about kindergarten. Or, rather, his teacher started talking about how Emmett was now too old for the Early Childhood class, so he had to leave. There was no mention of “kindergarten” until I mentioned it. All talk focused on the Special Ed room. When I asked, “How much time will he be with his peers?” I was told that he’d be with them whenever possible (which sounded more like “whenever is convenient”), but that he wouldn’t really be a good fit in the kindergarten class because he’s not ready. He’d be there for the beginning of class, the end of class, lunch, and specials (gym, library, music). This was…upsetting. I don’t like to think of my son as someone who “can’t.” Because I know my boy, and he CAN if you just give him a chance!

At this point, I pulled out the big guns and asked my mom to come with me for another meeting. Mom was a teacher, and is now a sign language interpreter, so she’s been on both side of “special needs” education. Because I brought reinforcements, the school also brought reinforcements – several other people were in the meeting whom I’d never seen before. They were all there to nod their heads when Emmett’s teacher recommended something, and to look at us like WE were the unreasonable ones when we asked for more inclusion in the kindergarten class.

I decided to do some more research, and began reading about how children with Down syndrome learn. I honestly hadn’t noticed much of a change in Emmett’s speech, gross motor, or fine motor skills since he’d started school. At least no more improvement than he would have had without schooling over the same time period. I read about the current theories about how our brains learn, and how kids with Down syndrome learn differently. Not slower, but DIFFERENTLY. I talked to his teacher about what I had read, and she was not supportive. I got the feeling that she thought I was telling her she was incompetent, and she basically shut me down.

This was the first time that I realized that I couldn’t rely on other people to do what was in my son’s best interest. This was when I realized I needed to advocate for my son. I decided that I would take it upon myself to teach him in the way that he would learn best. I bought a book that had popped up several times in my research about learning differences in Down syndrome children. I highly recommend it – Whole Child Reading, by Natalie Hale. It describes HOW kids like mine learn, and explains the best way to teach to their strengths. I read it cover to cover, started implementing some of the techniques, and BAM! Emmett could read a book I wrote for him! Emmett. Could. READ! I was so excited to see results that I shared it with his Early Childhood teacher. I sent his book (and the flashcards I had used to teach him the words) to school, and said “He can read this story I wrote! I found a book about how to teach kids with Down syndrome to read in a different way, and it’s working!” She sent a note home with Emmett that said, and I am NOT paraphrasing here, “That’s cute. I see that he’s memorized the book. Now I get why he doesn’t know the letters in his name anymore. Also, he’s saying the letter “M” instead of the word “am” in this book he’s memorized.” I was livid. I decided I wasn’t going to talk to that teacher anymore. She was dead to me.

I started looking into other schools in the area. They turned us away with a letter that said “We don’t have the services available to handle a child like your son.” I contacted the school district to ask if this was normal and if they had any suggestions for me. They said “The school he’s at now is the best we have for special needs education.” I looked into homeschooling. I considered a Montessori school. I thought about moving. Finally, I decided to have a sit-down meeting with the Special Education teacher. After all, Emmett was about to leave Early Childhood, so what did it matter what that teacher thought anymore? This woman is amazing. She LISTENED to me. She saw Emmett read his story! She asked to borrow the book I had read, so she could study it over the summer and implement it when he moved to her class! I could have hugged her (I don’t really do “touching”).

She asked about Emmett and what he likes, so she could use that information to help him learn. His old teacher never asked a single thing about his interests. I asked her if there was anything else I could do with him over the summer to prepare him for school. She gave a suggestion for a music therapy program she had heard of that dealt specifically with special needs children, and had a lot of experience with Down syndrome in particular. I contacted them, and their first question was “Is Emmett part of the waiver program?”

Whaaaaat? I had no idea. I asked them about it, and they sent me a link to a website that I would have NEVER found unless I already knew what it was called. Apparently, Wisconsin has something called the Children’s Long Term Support Waiver Program. It’s extra money they give you to help pay for services that are not covered by insurance. They also give you a coordinator that helps to determine what other services are available that might be helpful, and helps to set everything up. Unfortunately, there was a waiting list. It might be 6-9 months, maybe longer, before we’d make it off the waiting list. I was mad that no one had ever mentioned this to us. I was mad at myself for not finding it earlier on my own. I was broken-hearted over the thought that we could have been doing so much more for Emmett if I hadn’t just assumed that others were right when they said “We’re doing all we can.”

Fast forward to now, and we finally made it off the waiting list! Not 1 month after we first qualified for services, and we’ve already started swim lessons (his instructor is amazing), and he’s starting gymnastics this week. We also have a meeting this week to see what type of music therapy will help him the most. We’ll be working on gross motor, fine motor, and communication skills. He’s so excited about it all! I’m so excited about it!

His new teacher is perfect. She takes my suggestions (rather than shooting me down for interfering), and offers suggestions of her own to keep working on at home. He’s a part of his kindergarten class, and has a lot of friends who will see him around town and yell to their parents “That’s Emmett! He’s in my class! Hi, Emmett!” His kindergarten teacher is working closely with his Special Ed teacher to ensure he’s getting the most from both of them. I’m beyond happy with how it’s working out.

This year, he’s improving by leaps and bounds. He’s talking in complete sentences! He’s making his OWN sentences, rather than just repeating a sentence he’s heard before that fits the situation. He’s learned to RUN! He can climb stairs! He’s started back-talking! Wait… that’s not so good… but he’s using his own words to do it, so I’m not even that mad!

So, anyway, that’s the long, roundabout way of saying YOU KNOW WHAT’S BEST FOR YOUR CHILD! FIGHT FOR THEM, AND DON’T BE COMPLAISANT! FIND SOMEONE – ANYONE – WHO IS WILLING TO HELP AND WORK WITH YOU AND DON’T LET THEM GO! It might have taken me 6 years to figure out how to navigate the system, but it’s been worth it.