It took a while, but things finally started to settle down after the whole medical ordeal Ryder went through in June. I think I needed a bit of time to process, and to breathe. It made me realize a lot of things, including not to be complacent when it comes to Ryder’s health and care. As parents, we are allowed to say “that’s not good enough”. We aren’t just allowed to fight, it’s our job to fight, and to make sure our kids have the quality of life they deserve.

After being so sick, Ryder had a voracious appetite. I even had to take him a second lunch to school a couple of times, as he had already eaten his lunch in the morning. I was more than happy to deliver! He has gained back the weight he lost while he was in the hospital, and then some, and is tipping the scales at 42 pounds now. Small, but mighty. It’s thrilling to see him hungry and wanting and able to eat and keep food down. He has only vomited once in over a month. He gags, and sometimes has trouble swallowing food, but hasn’t been vomiting. Of course, we can’t predict whether or not it will continue, but we’re just enjoying this stretch and hoping things continue to improve for him. We met with our former GI specialist, who was as wonderful and supportive as always, and has some ideas for moving forward. He’s hopeful that we can help Ryder the next time he has a severe vomiting spell. I’m also excited to give you the sippy cup update. After replacing Ryder’s sippy cup with a regular cup when he was in the hospital, he has continued to drink from a regular cup. For years, Ryder refused to drink milk or smoothie, a key part of his diet and nutrition, from anything but sippy cup. Not only is this an awesome step forward in his development, but it has helped reduce the amount of air he takes in when drinking, helping to reduce his stomach upset. Of course this means we have a lot of practice to do, but we’re no strangers to putting in time working on feeding. I can’t wait until he is able to drink from a cup and set it down when he is done. Right now, he still forgets to stop drinking and tip the cup back down when he’s finished drinking, resulting in liquid everywhere. But we are so very proud of him, and this huge step he’s taken. He’s still using a sippy cup for water, as it’s so important that he always has access to water, but we’d like to see him transition to a different, more age appropriate, type of water bottle. I’m feeling hopeful!

One area Ryder is really struggling in right now is self-harm. He started biting himself again about 3 months ago, and we’ve been struggling to help him. Ryder bites his hands and arms when he is agitated or uncomfortable. Sometimes he hits himself in the head. We don’t really know why he does this, but self-injury is common in some people on the Autism spectrum. All we can do is help him to work through the periods of upset, and protect him from injuring himself. He’s started wearing wristbands again to protect his arms. We bandage his wounds as needed, and monitor closely, as bites are highly prone to infection. It’s incredibly difficult to watch your child hurt themselves, but we accept that this is part of his struggle and do our best to support him through it. He has also been yelling, a lot. This is also probably due to frustration and not being able to regulate. It could be that he’s bored or misses school. It’s tiresome. It starts to make you go a little bit crazy. It’s annoying. It’s frustrating for us. And it’s sad because we just want him to be happy and feel okay. And again, we try to help him work through it as best we can, and try not to lose our own shit. Some things that are most calming for Ryder are a quiet space, going for a walk or bike ride, swinging, or going for a drive. These all seem to help him regulate and make him happy. These aren’t difficult things to do, but what can be tricky is trying to juggle the rest of life, including parenting Hayley, while helping get Ryder settled and comfortable.

After our experience in June, I’m feeling so grateful that Ryder is medically stable, and healthy, for the most part. We have friends and acquaintances whose children are constantly fighting for medical stability. I can’t imagine how difficult that must be. Fear and worry take such a toll on your body and mind. It’s hard to find ways to keep going, to make peace with what you are going through, what you are living; but it is possible. I see amazing families in our community who are doing this; living their lives despite the challenges. They are incredibly brave. Wherever you are on your journey, hang in there, breathe deep, and stay strong.