Featuring Guest Blogger from Jsack1’s Blog

Life with my sensitive child

written by : JSACKMOM

http://jsackblog.wordpress.com/

Quick Intro:

Hi I’m J and I’m a stay at and work from home Mom of two sons. I work as a transcriptionist and raise them with my loving husband. I’m an avid reader and writer and I entered the blog world a year ago. My sweet son’s are my light and my loves as well as my amazing husband. Who allow me to be inspired and loved and able to share my journey. I’m honored to be guest blogging with the lovely Loorduation.

*JSACK MOM and I have become great friends who share many great things in common, not only a child on the spectrum. She is a sweet, caring soul who is very empathetic. She writes from the heart and her words come to life. I invite you to read this guest blogger post here. It is beautifully written and I am sure many out there, including myself can relate. Happy Reading FoLOORs!! Enjoy.

xo & Namaste. Dany

 

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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6 thoughts on “Featuring Guest Blogger from Jsack1’s Blog

  1. Beautifully written. A existence parents of children who are not special needs cannot understand. I do not have children who are special needs but my daughter is a special needs educator. She has taught me so much about autism, sensory issues and so much more and I thank her for educating me! Kudos to you J for having the courage to ask for help! You are a fantastic, warm, sensitive woman with a heart of gold. Getting help for your little guy is the most loving gift you can give him.

  2. You have touched my heart with your kindness, honesty, and compliments. In the land of I get it I’m so glad you do!!! You’re daughter is a gift to those special children and their parents. Thank you for reading and for being your beautiful self. ❤️

  3. Wow well written. I am exhausted just reading it never mind living it. You are an amazing mom and wife. There is nothing wrong with asking for help. You need to enjoy life outside of motherhood and marriage too! Hugs

    1. Thank you my beautiful Janice. I learned so much about what it takes to be an advocate for my children through you. You’re a dynamo, fabulous, loving Mother and forever friend. I love you my bestie always. ❤️

  4. That was an amazingly brave and heart felt view into your life❤️I pray for you and your sweet boy that you find the help you so desperately need! You have a gift of sharing through your written words. You have painted a raw look into life with a child on the spectrum. Well done hugs

    1. Thank you sweet Nyree, I appreciate you reading and supporting my blog. I learned so much on this journey through educating myself, and accepting my son for all his amazing strengths. He’s my blessing and has made me heart grow 3 sizes after the death of my beloved parents. I have had to mourn and accept a lot of heartache but knowing that I have loving family and friends cheering me on, makes me feel brave enough to face it all. ❤️

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