A few days ago, Gabriel had an early morning flight out to Arizona for work which meant I had to wake up early to take Lucas to school or just have him stay home with me. The past year, Lucas has gotten to be so very physically active that it is hard for me to keep up with him especially with a 5 month old in tow. Usually, he knocks over chairs, runs around all over the house dropping toys, teddies, blankets and just about anything in his hand that has lost his interest after playing with it. And, when Gabriel comes home in the evening, the house looks like it has been ransacked or hit by an earthquake. My eyes are always on Lucas as I anticipate dangerous situations like his penchant for climbing the balcony fence to freedom. But, having a 5 month old to nurse, it is hard for me to chase after him immediately and I find myself screaming a whole lot of "no's" throughout the day. I have him alone for three hours after school before Gabriel comes home from work, but those three hours wipe me out!
On that day, it was hard to take Lucas to school as Liam was very fussy and hungry when he woke up so I had to nurse him and by the time I had finished, it was too late to make it to school on time so I decided to keep him home. How bad could it be? Lucas was particularly happy and energetic that morning which meant I was headed for a long day. It hadn't even been noon and already, Lucas had broken a chair, had waddled in an unflushed toilet with urine (another blog story) for which I gave a bath and change of clothes, and then he took off his diaper and pooped all around the patio. I am used to this kind of behavior by now but what really shook me up that morning was when he accidentally fell on Liam as Liam was having tummy time on the floor. It didn't matter that I was sitting right next to Liam and creating a protective shield around him. All it takes is a second where my attention goes elsewhere for a fall either from a seizure or his walking issues. Liam screamed out a high pitch cry and I was panicking that perhaps he had been severely injured. I wasn't sure if Lucas landed on Liam's head or other body parts but I worried of internal bleeds and other traumas. Liam eventually was consolable and didn't seem hurt which was a huge relief but I felt I should monitor him closely for at least 24 hours as internal brain bleeds can take a while to manifest symptoms. Luckily, a week later, as I write this, he is still fine. But, for the rest of that day, I was shaken up and so upset that I could have drank a bottle of wine in one gulp.
Instead, I decided to take the kids to the playground at a local park hoping that Lucas would expend a lot of energy climbing and running. Who knows, maybe he will nap for the rest of the afternoon. I had to keep him on a harness and leash for safety since I can't run after him with Liam in the stroller. I try not to use it, if possible, but when needed, it is like an extra set of hands and eyes that help me keep him safe. He can bolt running from 0 to 10 in a second. Although the harness looks like a restriction in the eyes of most people who don't understand our circumstances, it actually gives him a bit of freedom to wander alone without me holding his hand or nudging him to where I feel he needs to go. Without it, and with an infant in tow, I would never feel safe to leave the house alone and Lucas would lose out on getting out and seeing the world.
Again, I am not sure how abominably misaligned the stars were for me that day but our outing was cut short by so many things that could go wrong, and did.
I was still shaken up by what happened to Liam but got the kids in the stroller and walked over to the playground which is a good 200 feet away at the end of a lake only to find out that it is under construction. I knew of another playground across the street the distance of about 2 blocks and decided to walk over there rather than pack the kids back in the car, collapse the stroller and drive over. The entrance to the park from where we entered had no paved walkway so I had to push the stroller uphill over grass with so many dirt holes that the wheel kept getting stuck. By this time, I am sweating and cursing under my breath. Lucas wasn't helping as he was trying to escape and run as far away as possible. I had him on the harness but he would fall and spin that he got all tangled up in his harness. He then decided to fall and not get back up. I am yelling at him to "help me out here a little!".
In the distance at the playground, I notice a dad with his toddler daughter staring at us all this time. Wouldn't it have been great if he saw how I was struggling and offered to help push the stroller? For a second, I thought that was why he was staring: out of concern. I was wrong.
I park the stroller in one corner of the playground with Liam sleeping and supervise Lucas as he climbs up the slides and runs in the sand. I hear this man saying to himself, "she just leaves the baby over there alone and ..." I didn't pick up the rest but it didn't sound good. We tried the swings but he is unable to sit alone on a swing and does not want to sit with me. The "good samaritan" is pushing his daughter on a swing and Lucas tries to get on her swing so I had to restrain him before an injury but he was persistent so I had him on his harness again and told him to just watch and not go near the swing. This allows me to stay close to Liam and allow Lucas to run around in the grass a bit by himself without me having to worry about him wandering far; and he can go very far, if left alone. As the man is leaving, he tells me that I am being a cruel parent for having him on a harness. He says the boy just wants to have fun in the playground and how could I possibly keep him on a "leash". This, coming from a man that just judged me for "leaving the baby by himself". How am I suppose to be with the baby and supervise Lucas at the same time?
I try to keep my composure and explain to the man that my son has an intellectual disability/ autism and this is for his safety and was recommended by our physical therapist. He then tells me that he knows all about autism as he has a cousin with the condition, as if this makes him an expert on all things related to autism. I had a very rough morning and I did not want to hear a stranger telling me what a horrible mom I was by treating my son like a dog. What parent wants to have their child on a harness and leash in public?! Under normal circumstances, I am good at ignoring comments from a**holes and can explain things diplomatically and calmly. Of course, I am still shaken up by what happened to Liam and out of nowhere, I feel my eyes well up with tears and loudly yell, "Don't judge me! You have no idea what we go through or who we are!" I blurt out other things which I can't remember. Never have I spoken to strangers like this in my life! What the heck is going on? I hear him say something but I am full on into my ugly cry that I can't make out what BS is coming out of his mouth. I walk away with Lucas and hold him as I just let out a loud cry. The man leaves for his car and I just sit there with Lucas in my arms and loudly cry until a concerned mom comes by and says, "hey mom! are you OK? What happened?!" My face must have been a puffy ,red, teary-eyed mess because I saw a lot of pity in her eyes. I still cry when I think about that moment. She had some kind words for me like "you know your child the best, there will always be judgey people in the world, you're being a great mom".
I tried to compose myself, thanked her and made my way back to the car. I walked the opposite direction from how I arrived at the park to avoid the holes in the grass which meant I had to walk a little further only to find out around the corner that there was no sidewalk but large gravels unfit for a stroller to pass. I had to walk on the street with two kids in a double stroller with cars passing by very fast. F*&@! I am loudly crying as I walk with hot tears streaming down my face and eyes so puffy I can't even see straight. What a shitty day! And, it's only half past noon.
It is necessary to advocate for the children but how about a little compassion for the parents? This day was by far the worst Dup15q experience so far. Will there be more in the future to top this? Ugh! I don't want to imagine.
"Dear God, help me to channel my anger over thoughtless words into positive results. And help me always to remember the effect my own words may have on others. " -A Special Gift
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