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

on 2 December 2014

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.


*Image used with permission from the wonderful*

41 Responses to “Life with my sensitive child”

  1. Bret-Founder says:

    Hey there. I felt every bit if anxiety, frustration and tiredness(not quite sure how to word it) in that article. Your son is indeed very gifted as are you. Use them well. I will see what i can do to help from an energy workers side of things. I will help with protections and see if there is anything that needs attention. With your permission of course. Be safe and try to rest. People like you and i need it from time to time.

    By the way everything will be fine tomorrow. Have trust in the help your getting will do whats required.

  2. Bret-Founder says:

    Great when i get a chance i will see what i can do.

  3. You’re not the worst mom around, you’re the wisest, bravest, most loving mother for your sons. You’ve taken a needed step to finding help, because when all is said and done you need rest too…always remember the serenity prayer. I repeated it to myself every day, raising my two little ones years ago, after their father passed away suddenly in his 46th year.

    Your problems stated in this post today will remain in my heart and I will take a deep breath after praying on this and send to you a bit of the strength I have as a mother too. One day at a time, one nap at a time, but most importantly you have to take care of YOU…because, once you’re a mom.. it’s forever, and beyond…Much hope and respect for you my dear…
    Take care of YOU…. <3

    • jsackmom says:

      Oh wow such beautiful words from a beautiful soul. ❤️ Thank you so much I’m feeling your love and prayers across the miles. I heard the Serenity prayer for 10 years working at a Substance Abuse treatment center. I felt such strength when i heard it shared from a group who’s life line it was. I will return to that source of power. Thank you. ?❤️

  4. I think it is important for you to have a team or at least more than one you to help your son. You need support as a caregiver. Otherwise you can get caregiver burnout and then you will not be able to help him. You know that saying that it is like when you are on the airplane and they tell you to put the oxygen on you first. I think it is important for your son as well to have others who can work with him. He will need to rely on others at some point. You both need to know that there are other people out there who can help.

    • jsackmom says:

      Thank you Deborah, I agree I’ve held the reins for so long it’s time for a positive change. Its zero fun to be burnt out and feeling like a shadow of my former self. ?

  5. 80smetalman says:

    Jeanine, I know what you are going through as I work with adults who have similar needs. The mega big difference is that I can go home and get away from it after a 24 hour shift while you can’t. I hope that you can have all the support you require.

  6. Sending strength your way. Take care

  7. punkrockpapa says:

    It saddens me to read this. I hope now you have gained enough support to realize you CAN do it and you are NOT alone. You are always in my family’s heart and we are constantly sending good vibes!

    • jsackmom says:

      Thank you my dear friend, I’ve now begun to realize that I do have support and resources available. I just need to have the courage to utilize them. Thank you for your love and good vibes they fill my heart to the brim. ❤️

  8. Kate says:

    You are NOT alone, my dear friend. Sometimes the best way to help is to reach out to others. And some times patience is a thing that alludes even the most saintly of mothers. I hope you get reinforcements and it helps on your journey.

    • jsackmom says:

      Thank you sweetie, and yes reaching out to help out others is what I do best. Reaching out to help myself is always a work in progress. I’m taking baby steps so I don’t feel so alone in my struggles. Always hopeful, helpful, and advocating for my children. ?

  9. That last sentence sent the tears flowin. You are a strong, wonderful mother. Your babies are so lucky to have you, and there is not one bit of shame in asking for help. If your son is very susceptible to his “sixth sense” so to speak, I might suggest going to your local Wiccan shop and seeing if they suggest anything to dampen his Sight. If you don’t have one nearby you can always call up the closest one to you and see if they have always my advice. It may help to control that otherwise wayward gift.

    • jsackmom says:

      Thank you so much for reading and saying so. As for my son’s abilities, I do smudge to clear his environment, but he’s very strong and pulls currents of energy in. I constantly have to cleanse him and his space as I refer to him as my “little ghost whisperer.” I was like this as a child so I know the feelings and awareness of being empathic can be overwhelming when not controlled. I will look into help for dampening his sight. Thank you so much for your kindness and helpful advice. ?

  10. So sorry that you have to go through all of this! Glad you have realized that sometimes a mom just can’t do it alone. Finding a support group or a counselor or some friends that can help you are imperative to staying emotionally fit as a mother! Hugs to you. xoxo

    • jsackmom says:

      Thank you so much for your kindness. Yes it’s been a struggle, but I know reaching out for help shows more strength than weakness. My greatest lesson learned is no Mom is an island. Especially when I’m just keeping afloat with the storms of life. ?

  11. Melissa says:

    I am so sorry that you have to go through all of this, but asking for help is not a bad thing. It doesn’t reflect on the love you have for your son. You deserve this help and when you can be more rested, more aware, and less worn down you will be even more beneficial to him. He has a great mom who is so loving and kind. HUGS for you friend!!

    • jsackmom says:

      Thank you my sweet Melissa, I agree and now that I have the help I need I need to push myself out of my comfort zone. We’ve all just been getting by and it’s not enough to run on empty in the gas tank. Thank you so much for your love and support. It takes baby steps to get better but in the end they add up to big leaps. ?

  12. Kelly says:

    I am one of the moms that has a ridiculously normal child. Sometimes I feel like I should apologize for that. But he has his moments, and when they happen, I feel all these things. Changes are hard, growing up is hard. This year we moved from preschool to kindergarten and a whole new school, schedule, friends, teachers, routine … that was hard on both of us. I read posts like yours, and I marvel at your reserves of patience and strength and love. I don’t know if I could manage it with even half the grace you do. I am glad you shared your story, and that you finally felt ready to ask for help. I think sometimes it really does take a village, and you are doing your best to provide the best possible care for your son. Giving up some of that control is hard to think about, but I am confident that you will find the right mix that works for you and allows you a little bit of a break. The better you feel, the better you can be for him, when he needs you most. HUGS.

    • jsackmom says:

      Thank you so much Kelly. Yes with an atypical children I have to advocate a lot more. I’ve felt now that my reserves are low and I just can’t function on the E in my personal gas tank. I’m finding more resources that can help us as a whole family. We all need to be part of that village to raise each other up, when we’re only just staying afloat. Thank you for reaching out to me and showing me that I’m not alone in my struggles. Wishing the best for you and your son. We recently moved too and the newness has gone from an adventure to fear. So time to get help and to keep fighting the good fight. Hugs to you. ?

  13. Donna Miglino says:

    They are the center of all we worry about. Give yourself some extra time to breathe…you will get better at navigating through it all, and it will feel easier. For now, cherish the online community that has been through it.

    • jsackmom says:

      Yes they sure are hon. I’m starting to realize how long I’ve been holding my breath. I will seek and advocate within that online community who’s shown me more acceptance, love, and support, then in my daily reality. I’m so thankful for them and for fabulous you Donna. ?

  14. Awww don’t be so hard on yourself- it’s obvious you care so much because you agonize over your struggles. You are wonderful. You care enough to get frustrated, you care enough to spill your guts and to wear your heart on your sleeve. That means something- it means a lot.
    PS I love Fleetwood Mac too! Hugs, Tracy

    • jsackmom says:

      Thank you so much Tracy, I’ve beat myself up so much and have become my own worst enemy. I just want my son to not have to struggle so much in life. But one thing I know is whatever he faces I’ll be right there by his side. Fleetwood Mac is my soundtrack of life. I always felt like I was born in the wrong era. ?

  15. karenung77 says:

    It’s difficult for any parent to do it all full time, but when your child is going through something or has ongoing issues (health, behavioural etc), you DO need to call in support. The support isn’t because you are lacking in any way, it is so YOU get support. : ) Happy Mom = Happy Family. Take some time out for you. You certainly deserve it. I hope something can be done about your son’s sleep apnea! Sounds scary!

    • jsackmom says:

      It truly is Karen, if I didn’t have respite I’d feel so hopeless. For the first time in my journey I feel hopeful. I’m so glad I made the call as no Mom is an island. Now the next hurdle will be with the OSA. Just today I found some information about a Dr doing some sleep apnea treatment, surgically free. So I will be contacting the office tomorrow to find out more. Thank you so much for reading and for your advice. ?

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