By a mom who lives it everydayIf there is one thing the internet has taught me is that parenting a child is difficult. And if there is anything that running this blog has taught me is that, parenting a special needs child is super difficult near overwhelmingly impossible. I have two of those struggles living together with me. My eldest son, Hilo, has autism. Autism is a lot to handle, and for some children, it can be debilitating. I'm on all the mom groups. I read the stories. Plenty of children with autism are disruptive in their daily lives, unable to cope with certain environments or tasks expected for their progress, some are violent or self-harming. Sadly, some have to move to group homes because of their behaviors. I have one child with something like that. Now throw in a fragile baby (well he looks like a baby but he's a year and a half) with medical conditions up the wazoo, and I have a basket full of chaos. Tons of questions pour in but one always sticks out in my mind. How do you do it? My dayThe day starts usually with my fiance giving me my morning kiss and saying, "Hilo's awake." Sure enough, I hear the loud stomping and Hilo's loud vocal stimming coming down the stairs at a fast pace. Tony says goodbye to both of us, and leaves for work. And so begins my routine of putting something on the TV so I can get dressed. What's on the TV can't be too interesting to him, because otherwise he won't get ready for school, but it can't be too boring because then he'll throw a fit. It has to be just right. Not a kid show, but nothing too adult-like either. So good luck figuring that riddle out! I run upstairs to start warming up Seamus' milk for the day, get his medicine all in it's syringe and try to quietly head upstairs to administer it without waking him up. Because Seamus' waking up too early in the morning spells bad day almost immediately. I walk quietly and slowly so that Hilo doesn't catch sound that I'm going into Seamus' room because otherwise he tromps up the stairs, loud as can be, to go see his brother. Needless to say, Hilo has woken his brother up before. After I give Seamus his meds, I start Hilo's routine of diaper change, new clothes and then a cereal bar to eat for breakfast. Though Hilo is able to dress himself fully, he is not motivated to get ready for school. So I have to stand there and direct him to put his clothes on, trying to avoid a huge fit. (We avoid any superhero pajamas during the school week because he will refuse to take them off, and anything after that is toast.) Because Hilo needs plenty of sleep to be functional, we get him up only one hour before the bus comes. So usually I rush up to re-heat the water of Seamus' thawing (donated) breast milk and call Hilo to the front door six minutes before the bus arrives. I have to make sure he hasn't brought any toys down to the front entry, otherwise it will be meltdown for the bus driver, so I take the toys away. He puts on his shoes, if he's feeling motivated, and allows me to put on his coat. Hilo always places the backpack on himself like a proud independent little man. Certain days, Hilo runs up to the bus by himself and waves goodbye. Other days, I have to force him on the bus stairs with his legs in front of him, kicking. The days he kicks are the days he gets so interested in something that getting on the school bus disrupts him. So I've learned to keep him bored before the bus comes. Or else. With Hilo gone....I am able to maybe run upstairs, hook Seamus up to eat and pick up my house from the night before, until a therapist is knocking on my door. I don't even have time to shower some days! But every single day, I have therapists coming to my house. Multiple ones, since I have two kids in therapy. Every day my house is seen my a therapist, and so am I. My kids are seen by other adults who are professionals, who I know don't judge me because they see so many other parents, but I feel like they judge me on my ability to run a household. Everything must be picked up, dishes done, floors clean, no smells, no garbage around the trash can, no toys on the floor. Everything must be cleaned. Even Hilo's room! Most of the time it's a disaster area, so I have to pick it up and organize while he's at school and keep it locked if he has therapy coming that day. If Hilo sees the toys in his closet, he gets too fixated on them and won't let them go. Therapy then isn't very good. Seamus wakes up when I have to wake him up for therapy, at least to get ready. There are two mornings we don't have to wake up early. Two mornings where I don't have to run around the house like a crazy lady, throwing everything in it's place while trying to remember if I'm wearing a bra or not. Those mornings are... still booked usually. On the mornings I don't have therapy, I typically schedule appointments for Seamus since Hilo isn't with me. We have numerous appointments for just about everything under the sun. So we usually have somewhere to go, something to do, with that small amount of free time in the day. After schoolLunch. Play. Therapy. Nap time. Now this is the ONLY time of the day that I get freedom. Both my children take two hour naps in the afternoon, sometimes longer. We all go to our bedrooms and lay down. Seamus takes a nap. Hilo, most of the time, needs a nap so bad but sometimes doesn't fall asleep. I still make him sit quietly in his room and play. It's still rest, which he greatly needs. Anyone who has ever met Hilo always comments on his energy. He is pure energy, and thus gets very worked up by things. Resting in the afternoon is good for him like it is for all of us. The way I feel about this time is that, the boys are getting their own time to rest and so I should take my own time. I know there are parents who don't get this luxury, and this honestly might be the key of why I'm not (so) crazy. I just take this as a break. I don't think about the house, or cleaning (unless it's driving me crazy). This time is all about taking a break from being "mom" and just being "me" for a little bit. It gets hard to pull myself away from my mom side, but I know I have to do it to keep my sanity. These two hours typically are spent napping, just like they are. Some days I read or write my novels. I might watch some bad TV shows before drifting off, too. But I always have to have my alarm set so I can wake up to feed Seamus again. My adviceSo after my fiance gets home, we decide what to do together as a family. Now that the weather is nice, we walk to the park for a little bit and then come home to eat something. We're able to watch a movie (always one of Hilo's movies) before it's time for Hilo to go to bed, with Seamus not far behind him. Tony then takes his alone time during the day to play on the Xbox. I will usually retire to shower, and get ready for bed, pick up parts of the house I need to. Then we both lay in bed and watch a few episodes of a show, and we fall asleep. That's what we do! All day long, I am managing to try to remember to eat, to do stretches on Seamus' body (he has stiff knuckle joints) and teaching Hilo new words and trying to encourage him to be more vocal about his needs. I'm the bill-payer and budget maker. I hunt down breast milk for Seamus to eat, driving all over town and advertising on local Facebook sites. Supper is always prepared along with Hilo's adapted meal, usually containing a different main course. Every single day. And I can see how discouraging this all sounds, but I do have advice that has really been defining moments for me. Things that have made me mentally handle what I'm going through without feeling pressure at all.
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AuthorGabrielle Rae is a special needs, stay at home mommy of two boys. She enjoys reading and writing novels in her spare time. @onbothfrontsArchives
August 2018
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