House of A Writer

Welcome to my blog where I share my special needs parenting journey with my heart, truth, and love, one story at a time. ❤️

Life with my sensitive child

Tomorrow I have a meeting and I’m feeling very nervous about it. I’m asking for help for my son. I’ve been his Mom OT (occupational therapist) for a year now. I’ve wrote about his sensory “diet” before with exercise, deep pressure massage, skin brushing, and joint compressions. I’ve recently started using essentials oils and adding in more vitamins, and Epsom salt baths. I also use PECS (picture example cards) for transitions. He knows when we’re leaving for school, choices to make after we’re home play Legos, Color, cartoons etc. He knows what we do for quiet time, read, cuddle, yoga, or IPad time. He knows when his meal, snack, and bath times are. Now this may sound very structured and read that I’m a anal retentive control freak. I assure you this is not the case, he needs to know everything about his daily life as change is his nemesis. For some people change is comfortable, adaptable, and like an elixir in life. Not to my son, with his SPD (Sensory Processing Disorder) it’s one of the most terrifying things to experience. With the traffic jam in his brain while trying to process his five senses, as well as the proprioceptive and vestibular ones, is a lot for him to take in. He gets exhausted as I can see how he struggles with a world that can be too indifferent, too loud, too bright, and too busy for him to live in. I keep him regulated as much as I can, and when I know there’s going to be a change I prepare him with social stories, plenty of positive feedback, and sensory tools like fidgets and things for him to safely chew. When we recently went away for the weekend we talked extensively about our trip beforehand. He knew we would drive there, stay at a hotel, go swimming, and watch hockey. When we arrived at the hotel my husband and our oldest son went for lunch. We decided to go swimming since we ate at the hockey game. I got our luggage upstairs and to the door and walked in. My sweet sensitive boy wouldn’t come, in he told me he was scared and stayed in the hall. I had to sit and hold him, assure him he was safe and I would protect him. As he’s very sensory he’s also highly sensitive to the spirit world and sees what others don’t. So it took me a half an hour to talk him into the room after blessing it and asking whoever was there to please go. If you’re still reading you’re probably thinking get that Mom a Xanax STAT!!! I get my son more than any other person on the planet, being empathic I feel what he sees. And sometimes I’ll see it too if I’m tuned right in. After all was settled we went for a swim and soak in the hot tub. This is just what the doctor ordered as we both felt refreshed and rejuvenated. So back to the room to shower and change and go for dinner. We walked over to McDonalds home of holy grail of chicken nuggets. The only chicken my son will eat by the way. We get our food and sit down to eat and then my son is upset. He wants to have his drink which I say after and I substitute for his water. Yes I get your typical 3 year old reaction of Noooooooo!!!! Then he just escalates from there as this McD’s doesn’t look like ours back home, why can’t he play, followed by crying and whining. As his frustration grows I’m almost packed up our food and ready to go. This time he’s in full sensory overload and the whole restaurant is there to watch the show! I’m dodging slaps, punches, and scratches, and yes I’m frustrated as well. I pick up my son and ask him to use his words and tell me how he feels. He says “I’m so scared Mommy I want to go home!” So back to the hotel we go, I held him in my arms and hugged him so tight. My heart was breaking for my sweet boy as he shared with me all the things he was scared of. Too many transitions in one day, tired, travelling, hungry, boom sensory overload was the result. So after I had him regulated and calm we watched cartoons and used my Sesame Street app called Breathe to help. Which brings me to the meeting I have tomorrow, I’m asking for help with my sons needs. It’s not easy for me to ask for assistance but yet here I am doing it. I’m scared of handing over the reins of his primary care but I’m also exhausted. I’m tired of being the Mom who’s worn out, with bags under my eyes that now are a set of luggage! I’m tired of being the only one advocating and protecting my bear cubs. I’m tired of everyone around me getting more sleep than me, and telling me I look tired!!!! One thing you NEVER $@@@%# say to a sleep deprived Mombie!!! I’m tired of staying up late after my sons naps out of sheer exhaustion. I’m tired of feeling lonely and missing feeling special, for a date night with my husband. I’m bone tired of having to sleep with one eye and one ear open, when the dreaded Obstructive sleep apnea takes over and my son wakes up scared, coughing, because he’s stopped breathing. I feel like the most impatient, misunderstood, pathetic, angry Mom. Who in my worst moments swears and yells at the my precious sons when my patient bucket is empty. Most of all I’m tired of struggling and surviving on vapors of sleep. It’s hard for me to accept some days this is my life, because I wanted to be so much for my children. So I’m asking for help for the Calvary to come in and join me on my team of no sleep or “barely enough to function sleep.” It breaks me to hear my son snoring and knowing that soon he’ll stop breathing. And I will run to him while he’s crying and alone for those moments. I feel like the oldest saddest woman, who’s only nice thing I do for myself was go see my favorite band Fleetwood Mac in concert. And it took nearly 2 years to do that, since the last concert of theirs. So that leaves me lying awake, watching my son sleeping peacefully, and praying it will continue throughout the night. And my heart lies here on my sleeve open, exposed, and bleeding, while my tears silently fall on my sons cheek.

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*Image used with permission from the wonderful www.bravegirlsclub.com*

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