Advice I wish I would have followed
In the wake of having a child, especially one with special needs, comes lots of advice. Most of it unwanted, some of it helpful, and a few pieces truly worth listening to. I know I probably either read or was told most of this advice at some point, but I think I was too busy with what was going on at that time to really absorb it. Looking back, these are the things I would tell myself to really take to heart.
Allow yourself to grieve
My mom is so wise. I am finding this to be more and more true the older I get. She has probably always been this wise and I’m just now realizing it, or more likely just now heeding her advice. Right after we found out Noah had Down syndrome, she told me to allow myself to grieve the loss of the child I was expecting. This was some of the best advice I have been given. Everyone expects a healthy, typical baby. No one hopes that their baby will end up in the NICU or have developmental delays or have issues feeding. There is nothing wrong with those expectations. Likewise, there is nothing wrong with grieving that loss.
Seriously, put the iPhone down and STOP looking at what websites tell you to expect of your child. I was so bad about this during the first few months. To some extent it helped to have a general idea of things that I should be aware of or prepared for. But the majority of the time it went something like this:
Noah has small red spots on his stomach. Google “red spots and Down syndrome”. Learn that these red spots are called “petechiae”. Continue reading about petechiae and learn that this can be a sign of leukemia, which you know from prior research that children with Down syndrome are at a higher risk for. You start to freak out. Look at the clock and realize it’s midnight and you’ve been researching on your phone for 2 hours. Shake your husband awake and tell him you are worried that Noah has cancer. Become angry when you are met with “He’s fine. Go back to sleep”. Go downstairs to the computer and email your doctor a photo of Noah’s petechiae and ask if we should be worried. Feeling more at ease, head back to bed. Just as you fall asleep, Noah starts crying. Wonder why you were awake while he was asleep and vow to never google again. Then do the same thing the next night.
More often than not, time spent reading about all of the many health issues that Noah might be susceptible to was wasted. Instead, focus on the positive and read the uplifting stories about incredible individuals who happen to have Down syndrome.
Trust your instincts
You know what is best for your child. I wish I would have believed this more at the beginning. I had read all of these blog posts by other moms about how you have to advocate for your child and to not take no for an answer. I would always roll my eyes and promise myself that I was not going to be that mom. I didn’t want to have to fight every doctor and therapist tooth and nail to get my way. I didn’t want to be that mom questioning everything and always asking for more. However, what I’ve found in the past 17 months is that you do have to be an advocate for your child, especially one with special needs. That’s not to say that professionals are wrong or don’t want to help. We have some amazing doctors and therapists on Noah’s “team” and I put a lot of faith and trust in them. However, no one knows your child like you do. Bottom line: if you feel like you are not getting the care or answers that you need, switch to someone who will. The first physical therapist that was assigned to Noah was just okay. She seemed to do just enough for me not to complain, but not enough for me to be happy. I really didn’t feel like she was the best fit for our family. After a couple months, I finally got the courage to request a change and I am SO glad that I did. This blog post by Noah’s dad (not to be confused with Cameron, this is another boy named Noah whose dad has a popular blog) was really what motivated me to seek a change. His post says that a therapist should be encouraging, patient and invested. I wanted this for Noah. This person came to our house once a week, I wanted it to be someone whose presence we welcomed and not dreaded. After requesting a change, we are so happy with our therapist and it has made a huge difference. Trust your instincts, mamas usually do know best.
Give yourself a break
At the risk of sounding selfish and rude, I am advocating for preserving your personal well-being. You don't have to be happy all the time. You don't have to be a Pinterest-perfect mom. You don't have to pretend everything is okay. If a stranger in the grocery store asks how old your child is and then proceeds to tell you all of the incredibly advanced things her grandchild was doing at that age, please don’t feel like you have to engage that person in conversation. If a friend makes a comment that you find offensive, say something. If you feel overwhelmed emotionally by the thought of going to a 1 year old’s birthday because seeing typical kids the same age as your son is difficult, then by all means don’t go. If you’ve spent 4 hours at Seattle Children’s Hospital bouncing from one appointment to another and you want to treat yourself to a 1,000 calorie blended mocha even though it would be your second one of the day, do it. I’m not saying to be rude to people or to always let your emotions guide your actions. I just know that I’ve spent too much time worrying what other people think. I’ve learned that sometimes you need to do what you what you can to maintain sanity. And sometimes that means not saying yes to every invitation, or not being the perfect hostess, or speaking out against insensitive comments, or allowing yourself to be indulgent every once and a while. Don’t be too hard on yourself.
Enough is enough
Now, I don’t mean this in the way that your parents used to yell at you when you had driven them to their breaking point. I mean that whatever you can do for your child is enough. Just do your best with what information you have and what you can handle at any given time. You can’t do everything and you don’t have to. I read some blogs that make me feel overwhelmingly inadequate with what I’m doing for Noah. Should I have Noah on dozens of vitamin supplements? Maybe should we transform our spare bedroom into an in-home gym optimized to work on his low muscle tone. Noah’s current therapy of once or twice a week is nothing compared to some kids. Would once a day be better? And there are so many options: physical therapy, occupational therapy, speech therapy, craniosacral therapy, massage therapy, aquatic therapy, hippotherapy (does not involve hippos, just horses), the list goes on and on.
The perfectionist in me still struggles with this. A year ago I would have wholeheartedly disagreed with this “good enough” mindset. I was all about 100% all the time. The reality is that you can’t always give 100% and even if you can, you can’t sustain it 24/7. Plus, kids need time to just be kids. While Noah can benefit from therapy to address his low muscle tone, he can also benefit from me just sitting down and playing with him, or getting a visit from his Amma, or by Cameron playing the guitar for him, or from watching Landon. You will always feel like you could do more, but more isn't always better.
Comparison kills joy
Mark Twain hit the nail on the head when he said “Comparison is the death of joy.” It is so, so hard not to compare your child to other children. It’s ingrained in our culture, this focus on milestones and development. I can’t tell you how many times I’ve wanted to scream at someone who innocently says “Oh, he must be walking all over now!” or “How many words is he saying?” when they find out I have a 17 month old. I know those are completely normal questions and statements, so I can’t hold it against anyone. But it drives me crazy how focused we are on milestones and accomplishments, even for our little babies. Why can’t people just ask how he’s doing, or ask if he’s happy, or just say that he’s cute and end there? My advice is to try as hard as you can not to compare. Maybe that means removing Facebook from your phone so the comparisons aren't staring you in the face. But for me it is more of a mindset change. Letting go of expectations and allowing Noah to do things in his own time. My sweet boy is exactly who he's supposed to be. I can't change him and I don't want to. I can only celebrate who he is and what he is doing right now.