I’m a day late but Christmas and the new job announcement got in my way..
Many parents, myself included, envision parenting as this wonderful adventure in which kids develop at the pace they should, play instruments and/or sports, learn to drive, go to prom and all that great stuff.
But what happens when those things are altered because of a special needs diagnosis?
Some parents find out about their child’s diagnosis before or right after birth, in cases of Spinal Bifida, Cerebral Palsy and Down’s Syndrome. I know parents of kids with these diagnoses, and it has been life changing for these families. All of them have other kids without any special needs.
The adjustment is hard. I cried my way through Lily’s evaluation for First Steps the day before her first birthday, even though I knew something was not going right. I knew she needed more help than what I could give her. That story can be found in Special Needs Round Two . When her diagnosis of global delays was given, I was even more devastated. The blame game began. It took a lot of talking with Lily’s speech therapist, Denise, to realize that it wasn’t my fault that she was developmentally delayed. We are in the process of getting Lily re-evaluated. At ten, she is still showing signs of issues that we thought she had grown out of. Cross your fingers for us- we may need it.
In Julian’s case, it’s been a tougher road. His psychiatric nurse practitioner, Ann, once said that we have adjusted wonderfully as a family to Julian’s needs. I almost hugged her. I explained to her that it has not been easy and it remains a somewhat rugged path. My question is: Why not adjust? Julian is wired differently and that’s okay. If we didn’t adjust, he would feel badly about himself and I couldn’t bear the thought of this. It would also cause so much chaos for him that he doesn’t need or deserve. It would do the same for the rest of us. Why do that?
He needs the ability to feel okay about who he is, quirks and all. We’ve enjoyed watching him grow and finally develop a sense of humor. Every kid needs that, with or without a diagnosis. In a home with medical issues, this is a necessity.
I have made many mistakes in raising Julian (and his siblings). Even after reading up, trying many different things, therapy for both of us, getting Matthew on board and lots of burnt dinners in the process, things remain interesting. Julian is now 12 and puberty is kicking in.
Learning that your child has a medical and/or physical special needs diagnosis is complex. Some parents grieve the life they feel their child “should have had”. This is a rough one for me, as I’ve never done this. I can see this happening with kids with severe medical problems. A high school friend of mine has a child with spinal bifida and she lives a full life. Instead of being devastated and staying in a hole as some might, Shelly and her kids go out and do all kinds of neat things. Ryan is eight, and she is one of the coolest kids ever. She’s a tiny fighter. Some parents, like myself, are devastated and are not sure where to go next. Some fall into the “research pattern” and find all kinds of information to know exactly what to do.
This can be a great thing- I have read up a lot on Julian’s diagnoses and it didn’t hurt to work with kids with similar issues. (It did physically hurt some days, but that’s another story. I learned a lot from that job.) Some parents, sadly, go into denial. This can be damaging to everyone involved, and I highly recommend seeing a therapist, church member, or another trusted person. If it’s your partner, this can get really bad quickly, and I definitely know the pain of where it can go. Please do what you can to change that path. Talking can help. Easing your partner into information, appointments, and other things can help. Just don’t force them, because that can make things worse.
I recommend reading up, asking questions, and getting all the help from the medical community you can. The more information you have, the more empowered you feel to help your child. Julian’s been very lucky- he has had a great team from day one, because I wouldn’t let him have anything less. I’m a proud mama shark.
It’s okay to feel different things- don’t let anyone make you feel different. Julian was diagnosed almost seven years ago, and some days I still feel overwhelmed. As of writing this post, I’m about to battle it out with his school over his IEP because it’s currently not being followed. Some days are better than others. Some days are absolutely great, some are so bad that you want to devour a liter of Cherry Coke, a bag of salt and vinegar chips and call it a day. (Okay, maybe that’s just me. I didn’t do all of that, but I considered it.) If you’re overwhelmed, write it out. Get someone to help you sort out your feelings.
Daily life also changes. Depending on the diagnosis, your child may need assistance with everything, or nothing at all. This can become time-consuming and require an overhaul of your routine as you knew it. Food may need to be altered due to sensory issues- I live in a house with two kids with sensory issues, and I gave up on those battles years ago. Julian won’t eat french fries if he can see the potato skins or if they aren’t super warm. Lily won’t eat anything that resembles soup, any pasta that isn’t spaghetti, mainly because it looks different. Julian actually had a meltdown once over the shape of pasta my father in law used for dinner. These changes can be irritating to make, but they are necessary for the world our kids live in. I’ve learned to look inside Julian’s mind a bit, probably because of my work, and try to see the world as he does. It can get hard, but it’s worth it. Explaining this to others can get even harder, even your partner.
It takes time to adjust- it won’t happen overnight. It takes time to learn how your child’s machines work, or how to get the wheelchair to fit in your van. Give yourself space to make those mistakes. I completely screwed up Julian’s 12th birthday party by inviting too many people, which cause him to shut down at the end, but I’m pretty sure he still likes me. He used to get mad at me when I would hold onto him with a death grip in parking lots and large stores, but he had a bad record of eloping. It was terrifying to have to run after a very fast 5 year old, especially in a parking lot. He was seven before I let him walk more than a foot or two away from me. (I never used a leash because I hate those things.)
If you’ve got a kid who takes things literally, you have to change how you talk to them. For example, I once told Julian to drop the jar of jelly he was holding after he was told not to eat anything. I was making dinner and he didn’t need to eat so soon before.
He dropped the jar.
Major mom fail.
Thankfully, the jar was plastic. That would have been an awful mess otherwise. Matthew and I have had to re-think things before we say them, because Julian thinks differently, and so does Lily, to an extent. We are still trying to figure out her thought patterns. She doesn’t quite think on a 10-year-old level, so we have to tread carefully.
If you have to buy things to keep your house, kid and car safe, do it. You’ll thank yourself later.
It really does take a village. I have friends that have kids with all kinds of physical/ developmental disabilities. A few have kids with autism, and they have been so helpful when I’ve needed them.
Being a parent of a special needs kid will make you a different person. I’ve fought for Julian since day one. Lily’s issues haven’t required so much of a fight, but I would do the same for her. It makes you tougher and less likely to take people’s crap.
Breathe and find something that makes you laugh. Comedy will get you through anything.
Get a binder and organize all of your kid’s paperwork. Julian and Lily have their own binders.
You are not alone, and get help if you need it. Take time for you, because your kids need Mom at her best. If you’re tired, sad and cranky, that’s not your best.
If you have other kids, let them be involved in adjustments. It’s not easy to be the sibling of a special needs kid. My kids have been pretty good about Julian, but it can get hard for us as parents. Cameron and Lily have a post about this in The Siblings’ Turn
Allow your child to live their best life. If they can do it- let them. My friend Laura Leigh’s son, Levi, is seven. He is in a wheelchair due to Cerebral Palsy, and he is an awesome kid. He smiles for days, gives his younger sister Presley wheelchair rides and loves school. I let Julian run cross country in the fifth grade and he loved it. We have a rule that his diagnoses aren’t excuses for not behaving. He does have bad days, but he doesn’t get to say, “I’ve got autism, so I get to act like that”, “I forgot my ADHD meds, that’s why I’m like this today”.
Most of all, love and accept your child the way they are. It might sound weird that I wrote that, but it is saddening that many parents don’t. Acceptance and love matters- it’s everything.
Quotes courtesy of Pinterest
Recommended Reading: The Spark: A Mother’s Story of Nurturing Genius
My boys were born in 2005 and 2006. I thought I’d never have a daughter and felt a small amount of sadness.
A small change occurred in 2008 in the form of a little girl, Lily. She even got her own post, My Dream Girl
I didn’t think there were many differences between raising boys and girls- at first. I must have been in a sleepy haze or serious denial. Now that I’ve caught up on a few years of sleep, I’m much wiser.
I was once a little girl. I couldn’t have been that difficult to raise, right? I asked my mom if I was as dramatic, loud and messy af as Lily is. We call her room “the kid version of “Hoarders” because it’s never clean for more than a day. My mother told me yes, I was loud (I’m still loud at 35, no shocker), dramatic, but not quite at her level of messy.
Puberty has come for us and the current situation is buying bras. I had to get her a real bra recently, not just the cute sports bras. Yikes. She’s 10. Is this a thing? I skipped training bras and went straight to regular ones.
We’re a bit gentler on Lily. She’s more sensitive than her brothers and still may be developmentally delayed. (She is getting evaluated very soon.) That requires a different mindset. I have to teach her different things- to know her worth as the woman she will become, how to say “no” and not feel bad, caring for others (as in a family, should she have one) and many other things. The boys will get the same lessons but obviously slightly tweaked.
Lily loves clothes and has shown interest in makeup which is a great thing. I can’t wait to see this develop. This is just a glimpse into the fun parts of raising a daughter.
These guys have been full of adventure since birth. They have really lived up to the hype of “boys get into everything”. Once Julian was able to walk and talk, the joint adventures began. They have rode in laundry baskets down our stairs, made a slip n slide on the kitchen floor, slid down the driveway on sleds, gotten injured together (Julian ended up with staples in his head) and many more things.
Now they team up to see who can annoy Lily and Mom the most.
Most of the time, the boys are low-maintenance and I appreciate this. Sometimes. I don’t appreciate them wearing the same socks for four days in a row, using their bed as a trash can or any of the other many gross things they do. Ew. My boys have shared a bedroom since Lily was born. They’re cool with this, probably because they can stay up late, talk and plot to take over the universe.
Julian making a bubble at the Louisville Science Center
Being the mom of two boys has lowered my shock factor. At this point, if someone isn’t bleeding, broken a bone or the house isn’t on fire, I’m good. As of writing this, two out of the three have occurred- no worries, my house has never caught on fire. Boys have been much easier to raise- they do get mad, they cry, but with a lot less drama involved.
Well, with one. Julian and Lily participate in what I call “The Petty Olympics” to see who can fight over the smaller things. This, of course, is when Mom is done for the day, maybe even the week.
We feed them, keep them clean, medicate them (both are on meds- Cameron takes one for migraines and SVT and Julian has his ADHD meds) and love them. I think they’re doing pretty well. Keeping them clean is a bit interesting- their showers are destroying our water bill. Lily needs a bit more to keep going but some kids do. We’re okay with that.
Cameron at the Magic House in St. Louis
I’ve been very lucky to been able to have these kids. All jokes aside, they complete my life.
Do you have kids of both sexes? What differences have you seen? If you don’t have kids, what do you think?
It’s much easier to spend time with one kid than two, three or more. Once you have more than one, things get a bit more complicated. You have to divide not just your time, but also your brainpower. As they get bigger, the more of both they need. If you have more than two, it just gets more interesting.
I have three- in the midst of my prenatal and postpartum depression during and after my pregnancy with Julian, I wondered how I would ever spend enough time with Cameron. I worried about ignoring his needs for Julian’s. I worried about this years later when Julian’s needs became obvious. Most moms in my spot would have this same fear, so I didn’t feel too out of place about it.
As the kids have gotten a bit older and developed personalities, I have figured out ways to spend time alone with them. The house has calmed down enough to allow for this to happen.
I know, teens really might shudder at this one.
We aren’t that fun anymore, but they’ll get over it about the time they go to college. Just switch off Fortnite and go for it. You’ll thank yourself later.
Take turns picking and you might be surprised what your teen picks. Teens are pretty fun people. Sometimes.
What is the most fun thing you have done with your child lately?
I decided to use an actual definition for this one, because I understand that not everyone may be clear on this one. I also think it’s the respectful thing to do. I’ve got friends and family members in the community, so I’m very clear on what this term means. Planned Parenthood- Coming Out Definition
It’s a hard process. Some people choose to wait until a certain time, some never do. It’s an individual choice, and should be respected. If someone comes out to you, please respect that person’s decision to tell you, even if it isn’t within your own values. It takes a lot to say “I’m a lesbian” or “I like guys”, or however it is said.
There is a lot of fear in coming out, however. Many people fear these things:
There is so much more support these days for the LGBTQ+ community. I feel there is a long way to go in the legal world, but it’s coming. Marriages were a huge issue a couple years ago and I shed tears when they became legal everywhere. I believe some states are still trying to fight that one. Macklemore had it right when he said in “Same Love”- “No freedom until we’re equal/ Damn right I support it”.
Have you ever been to a Pride event? I have been to quite a few. Louisville is a big city and every June, there’s a huge Pride event. This year’s event is June 15-17, with lots of food (my main requirement for anything), music and a lot of other fun things. I usually see a lot of friends while I’m there. It’s so much fun. If you’ve never been, and you’re comfortable going, go. If you aren’t sure if there is an event near you, try looking on Google “pride events” and your city or the nearest city to you. Not everyone lives in or near a big city.
These events began as a way for people to get together, have fun, be themselves, meet others and not fear being judged or getting hurt. Of course, this didn’t always go well but over the years, the events have become safer. There will always be those that oppose these events.
I have a friend, Kate, that is happily raising a son, with her wife, Christy. Lucas just turned two, and he is the happiest toddler that I’ve seen in a long time. I hope he stays that adorably happy. They got married in Hawaii a few years ago and the pictures were adorable. I know they have struggles like everyone else, but they’re one of the cutest couples I’ve ever known. Lucas is like every other toddler out there- he just has two loving moms.
I wrote a post not long ago, LGBTQ Kids: A Guide for those who need a bit of help figuring out how to navigate the waters of having a child that is LGBTQ. This is becoming more common than people realize and I wanted to bring that to your, my readers’, attention. If you know someone who could benefit from it, feel free to send them the link. I think it could help parents who aren’t sure what to do. We don’t always know what to do as parents, or even aunts, uncles, and so on. That’s okay. That’s why we ask others for ideas and read up.
Kids are pretty smart. They can tell who accepts them and who doesn’t. They’ll stay closest to those that do. All kids, no matter their sexuality, need someone who loves and accepts them exactly for who they are. They don’t need or deserve ridicule for who they love. They have enough to worry about.
Anxiety and depression are common in many people. When you are struggling with hiding who you are (or feeling like you have to), losing someone you love and having to start over in a small pool of people and not feeling fully accepted,things can get very hard.
Drugs, alcohol and self harm are three coping skills that are used by this population. Sometimes it can be deadly. There are therapists that specialize in LGBTQ issues.
This may be a good time to look into how you can become an ally or otherwise support the LGBTQ people in your life. How can you be an ally?
Pics courtesy of Unsplash