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I’m Not Alone!

7 Jul

I typically don’t vent on my blog, and am definitely not in a place where I need a pity party. I am at a place where I need complete honesty with somebody other than just my family and super close friends.

I need to say it out loud and just declare it. I AM A GOOD MOTHER, but I don’t know how to parent my youngest child. I feel so alone. I know there will definitely be lots of people who read this and feel like I am speaking their thoughts as well.

Many of you already know that my oldest child has a rare genetic disorder called Prader Willi Syndrome. I read it described recently as the starvation syndrome. He also has sensory processing disorder and autism.

What many of you don’t know is that my youngest son has most recently been diagnosed with ADHD, a mood disorder (bi-polar) but they won’t call it that for his age group, and he is definitely exhibiting behaviors of Aspbergers.

I have spent the last 3 years wrapping my brain around PWS and Autism. I get it. I can work through it. I even get the ADHD even though it is so overwhelming and he is so frantic all day that I am worn out. What I don’t get, what I am struggling with, what I feel so alone with is the mood disorder.

I joined a support group for parents of bi-polar children. It has been amazing. What an amazing group of people. One of them suggested that I read a book entitled, “The Explosive Child  by Ross W. Greene. I want to cry as I read word for word what is a description of life with my youngest son.

In the book one of the mothers says, “Can you imagine being scared of your own child?” She then said, “I am!” My youngest son is only 3 years old and there are more days than not where I am scared of him, scared of his rages, scared of his violent temper. I am able to ignore now but I have had more than enough of people telling me how to parent him, spank him, discipline or reward him and so on.

Let me just get this out in the air. Children who suffer from mood or psychiatric disorders DO NOT RESPOND TO NORMAL CONSEQUENCES. I am not a bad mother and my son is not just a brat who doesn’t get spanked enough.

I love my son more than anything in this universe. I sleep with him every night and we cuddle and he tells me I am beautiful. His intelligence is unbelievable, and I love having unique conversations with him. I am however am emotionally drained. I feel in my heart that with my continued meditation and yoga that I can handle it, as devastatingly draining as it is. It is him that I feel for, I can’t imagine his soul feels good in such turmoil all day long. It’s almost like he is a prisoner in his little adorable body. When the rages come on, he just can’t stop.

I have decided to do is keep our house as organized as possible. I am on a mission to keep as few distractions for him and my older son. Today I went full force. I packed up almost the entire playroom. I have 4 huge bags for donation and the rest of unused but usable later in life are packed up and put away. I kept the swing in the room and some books and a few cars. This room will now be our quiet space. I will have a quiet space to meditate and they will have a quiet space to decompress as well. I am even thinking of adding some black out lights for a sensory experience. I am feeling really hopeful that this might be helping us move in the right direction.

I am writing this post for all the other parents of “Explosive Children” whatever your diagnosis may be. I am writing this to say you are not alone. I am writing this to say you are a GOOD PARENT. I am writing to say that it is absolutely ok to say that you need help. I am writing this to say it is ok to say you are depleted and need a recharge.

Through all of this I will keep researching and keep loving my son until I find what works for him. In the meantime for all the parents out there who know a family or a child like this, I ask that you have compassion in your heart when you are in your dealings with them. They are lovable and want to do well if they can.

I will not give up on either of my sons.

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13 Responses to “I’m Not Alone!”

  1. barbarapotter July 7, 2012 at 5:29 pm #

    You are an amazing mother Rachel. I love Maddy so much and I also realize that he has these very frequent moodxswings and sometimes violent ones that stem from something just being crooked like his shoes lined up not right next to each other when he is putting them on. This is not normal behavior or a 2 or a 3 year old as people have been saying all along. Also they are not there to watch and see these reactions on a daily basis like his family does.

    When this happens, he will reach out and try to hurt someone or something and if there is not something right in front of him he will seek something out until he can do something to counteract this rage. Something so simple will trigger it.

    I love him so much and I hope that they can figure this out. I wish I were there to help. I am hoping that when I do come that I can do head compressions on him and they help like they do Blaise. Love you, your mama.

    • rachyrachp July 7, 2012 at 5:43 pm #

      Bring it on mom. I welcome any and all healing for my child.

  2. Chris Margocs July 7, 2012 at 6:14 pm #

    You are not alone; I’ve “been there and done that”. We went through a year of after school rages (my son held it together all day long at school, but would explode at home). We finally discovered that it was sensory overload; putting a name to it, talking about it, and providing appropriate sensory calming techniques helped him tremendously. May I suggest (if you haven’t already) getting a couple of beanbags for your quiet space? My son responded positively to the pressure of resting between two bean bags (head out, of course!). Good luck on this journey; I am re-feeling the exhaustion and emotional drain just reading your post.

  3. Amy July 7, 2012 at 7:52 pm #

    Thank you for sharing this, Rachel. I come from a very ignorant understanding when it comes to having kids, let alone learning different personality quirks & teaching life’s lessons at the same time….I found myself asking questions about what types of methods you’ve tried and/or making comments about what you could try reading or doing….and then I felt a bit embarrassed realizing that I really can’t ask/make any comments about what to door not do because of how ignorant I am to even being a parent! It’s actually laughable to think I could offer help when I also remember that you love your sons unconditionally; so regardless of what does or doesn’t work, your actions spring from a source of love….which means you already are providing for him in the best way possible for you. That’s very honorable and encouraging of you. 🙂 Thanks again for sharing you’re understanding on a very unfamiliar topic for me. Keep your chin up, babe. All my love, Amy

    • rachyrachp July 7, 2012 at 9:14 pm #

      Love ya Amy. It’s not about having kids or not just compassion. You my dear have lots or that. Cant wait to see you next week.

  4. Allison July 8, 2012 at 8:12 am #

    WOW!! I am in the same boat only my son is 7 and starting Second grade and honestly it scares me like crazy. I have had an OT evaluation on him, changed him to a psychologists and a psychiatrist. His pediatrician admitted it was out of her scope (I love her)

    I think we finally have a better diagnosis and are working with new meds, researching possible diets, etc. The Bipolar is a new diagnosis for us and mixing that with ADHD makes it all that more confusing. I have been married to a man who has fought with these his whole life and it has made a challenging marriage even more so. Lately, I have felt like screaming at the top of my lungs!!!!!

    Anyway, I know we aren’t really close yet, but you are not alone and I am feeling and living the same frustrations and fears!!
    Allison

    • rachyrachp July 8, 2012 at 10:13 am #

      Allison, we are more alike than not 😉 I am always here for you as well.

      xoxoxo Rach

  5. Jo Ellen Corcoran July 9, 2012 at 12:50 pm #

    Rachel.. Are you in LA at all in the next few days?..
    Would love to give you a hug..
    That maybe you might come to LA from Itay..
    Jo Ellen

    • rachyrachp July 9, 2012 at 10:19 pm #

      No, still on the east coast, but can’t wait till we meet in Oct.

  6. nikky44 July 10, 2012 at 2:42 pm #

    You are a PERFECT mother, and although I don’t have this same problem qwith any of my children, I know how hard it can be. Much love ❤

  7. MoreThanSalt August 6, 2012 at 4:33 pm #

    you are a human being who is raising other human beings in a caring and thoughtful way. i love you.

Trackbacks/Pingbacks

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    […] I’m Not Alone! (3wordsfor365.com) Share this:Like this:LikeBe the first to like this. Posted in A Must Read | Tagged Conditions and Diseases, Genetic disorder, health, Jennifer, Prader-Willi Syndrome, Prader–Willi syndrome, Wayne Dyer, Youngest son […]

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