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Therapy and sanity for ordinary parents of special kids.

Amazing Guest Post by Sally Brown! A Must Read for All Parents of Special Children

Today is a very special day. We received an incredible message from Sally Brown, who is  60 years old and living with Cerebral Palsy. Sally has graced us with her wisdom in her work below. If you can relate to this please leave Sally a comment.

 

10 Things I Wish You Knew
(A note from a special kid to special Parents)  by Sally Brown

 

1.     You are the perfect parents for me. I know that you did not sign up for a kid like me- I also know that you sometimes think you cannot face what it takes to raise me.  I want you to know that this is not true.  I believe that I chose you.  Whatever you need to learn, you will learn.  The strength you think you need will come from somewhere.  The people you need to meet will show up when you need them.

 

2.  This is the perfect life for me. My life is a very special one.  I believe that I will impact the world in a unique and wonderful way.  Remember this when your heart is breaking because you want a path for me that is so much easier than this one.

 

3.     I need you to find your own spiritual path. The road we are on is not an easy one- to make it successfully, you will need all the spiritual strength you can muster for the tough days- You will need to help me when my spiritual strength is out the window- Often, you will see signs of my determination and be amazed by it.  That is not enough- You will have to find your own answers- I am depending on you for it.

 

4.     However you feel about me is OK. Sometimes you will feel tired and helpless and like you cannot care for me one more day.  Sometimes you will be mad because there seems to be no escaping me.  That is OK- There is no way you could take care of me without having those days.

Sometimes you may watch people look at me and be a bit embarrassed that I am not doing better- that does not make you a bad parent… it just means you are human.

Know that when you have lots of these days in a row, it is time for you to get somebody else to take care of me, just long enough for you to regenerate yourself.  It is always important that you let people help you.  I am depending on you to do whatever you need to do to take care of yourself.

 

5.     However I feel about my disability is OK. Some days you will be amazed at what a happy contented person I am and you will wonder how in the world I do it.  Treasure those days.  Some days I will be discouraged, some days I will be mad, some days I will even feel really sorry for myself.  Don’t panic, I will come back around again.  If you let me express these unattractive feelings, they have much less power.  Even typical folks feel sorry for themselves sometimes.

 

6.     Let me try things I want to try, even if you are sure I will fail. I know that you want to protect me- that is your job, I am your child.  But I need you to understand that my survival is always going to depend on my determination.  Part of my own process is to figure out what my limitations really are.  Sometimes I may want to try to do things that seem impossible to you. Please encourage me anyway.  It is the willingness to try that is important- success is a bonus.  Know that if I fail, I will get over it.  If you make me scared to try, I am really doomed.

 

7.     Don’t worry about my whole life today. Sometimes you will drive yourself crazy worrying about how my life will turn out.  You will lose hours of sleep trying to figure out how I will survive in the world after you are gone.  This is not helpful to me.  Just help me stay in today.  The more you can focus on whatever we have to face today, the more you will be helping me develop the skills I will need when it is time for me to get along without you.

 

8.     Sometimes people will be mean to me or scared of me.  I expect you to stick up for me, but, I do not expect you to change the world.There are lots of really wonderful people in the world.  You and I will meet many of them.  There are also some real jerks who will be afraid of me or not treat me fairly.  They will assume things about me that are not true.  They may even assume things about you that are not true.  You may want to blow their brains out.  I may want to do the same.  I expect you to speak up for me when you can.  But I also need for you to be able to let it go.  It will not help me if you are mad and defensive all the time.  If you are, there are people who may not want to help me just because it is too hard for them to deal with you.

 

9.     Finding good doctors and professionals is important but, you know me better than they do- I expect you to trust your own instincts about what is good for me. The doctors and therapists that work with me are going to be very important in the quality of my life.  Some of them will be amazing and some of them will be pretty crazy.  Often, it will be up to you to decide which is which.  Listen to them, and know that what they say is important but, also remember that you know me best.  If something they suggest does not feel right to you, listen to that small voice and speak up.

 

10.   I really hope we can laugh. I believe that laughing was probably God’s best idea- It will be the one thing that can bring joy to our lives the quickest-  If I get stuck in a mud puddle, it is probably funny.  If you are lifting me and we both fall on the floor in a heap, that is probably funny too.  A good joke is worth taking the time to laugh at- Help me not get so caught up in the serious problems we face every day to forget about laughing.

 

33 Responses to Amazing Guest Post by Sally Brown! A Must Read for All Parents of Special Children

  1. Nicola November 20, 2012 at 8:02 pm #

    I’m not an emotional person but this brought tears to my eyes. Tears of relief and tears of gratitude. Thank you for such wonderful words. I have two boys with aspergers and I WILL believe that this is the perfect life for them and they will find their own unique path and I will give them the strength and the confidence to try.

    Today, Sally Brown, you impacted my world in a wonderful, unique way, thank you xxx

  2. Kate November 20, 2012 at 8:28 pm #

    Very insightful! It is nice to have that perspective, thanks for sharing!

  3. Christine November 20, 2012 at 8:42 pm #

    Brought tears to my eyes. Thank you….

  4. Elaine November 20, 2012 at 9:01 pm #

    I so needed to read this today. Tears.
    Lots of tears.
    Thank you.

  5. Becky November 20, 2012 at 10:12 pm #

    Brought me to tears and made me smile! Thank you!

  6. Heather Bowie November 20, 2012 at 10:28 pm #

    This was so beautiful and encouraging. Thank-you so much for sharing.

  7. Jo November 20, 2012 at 10:58 pm #

    I love this!

  8. Amy Craane November 20, 2012 at 11:54 pm #

    Wow! This is really amazing! Thank you for sharing your wonderful insights. I learned something, and not only was it valuable, but I didn’t think it was possible. It is amazing what a different perspective can show about something you feel that you know very well. Thank you.

  9. susan theroux souza November 21, 2012 at 12:15 am #

    I WAS THINKING TODAY HOW I WANTED TO SIT DOWN AND WRITE ALL OF THESE THINGS, FROM A GRANDPARENT PERSPECTIVE! THANK YOU FOR THIS…I CRIED,I LAUUGHED, BUT MOST IMPORTANTLY I UNDERSTOOD, AMAZING AMAZING AMAZING! <3.

  10. Cindi Jones November 21, 2012 at 1:23 am #

    These words are the most encouraging things I have ever read! You are so insightful, beautiful and real. You make me and others I know feel great about what they are doing for their child/children. I don’t think this applies just to parents of special needs kids, but to all parents!!! Thank you for your words of encouragement and may God bless you and your parents for raising such an intelligent child!!! YOU are AMAZING!! 🙂

  11. Donna Turner November 21, 2012 at 1:35 am #

    THANK YOU! I needed this so much

  12. Christine Klatt Rico November 21, 2012 at 4:22 am #

    This is wonderfully healthy. Thank you so much for the encouragement!

  13. Jessica Pajak November 21, 2012 at 2:47 pm #

    Thank you!

  14. Heather November 21, 2012 at 3:03 pm #

    Balm for my soul! As a Momma of a special needs child you’ve talked about almost anything and everthing I have felt, worried about and dealt with as a Mom of children with special needs. Thank you Sally for your words, for taking the time to write them and for sharing them with the world! You are helping many people with what you’ve said here!

  15. Teens November 21, 2012 at 3:31 pm #

    Such inspirations from the heart! As the mother of a child who has only 3 words, I know this is just how he feels! You said it all for him. I see it in his eyes and his smiles! I pictured you smiling throughout each comment. I’ve always felt that if he could talk, he’d be the funniest child of all 5 of our children! He has brought nothing but joy, love, unconditional acceptance, and happiness to our lives and everyone he meets.

    You calmed my soul! Thanks! I needed that!

  16. Vickie Miller November 22, 2012 at 4:16 am #

    Simply amazing! Thank you so much Sally. I’d like to know if I could have a copy of this or if you have a website?

  17. Flor Camota November 22, 2012 at 9:01 am #

    Lots of tears have I shed tonight.!. My grandson has a mild intellectual disability and his parents are doing their very best to prepare him in “his world” to come. He is a cheerful and gentle child. I always tell him to remember that I love him when he visits us, Silently, I wish his brains would open up and let me know what he has in his heart. Each morning, I lift him up in prayer asking God to protect him with His angels for I know that there are bullies in school. Thank you so much for sharing your words of wisdom and encouragement.

  18. Hilda Bowen November 23, 2012 at 8:17 pm #

    Yep, crying. I have a child who is nonverbal with autism and other disabilities who has not yet mastered the ability to communicate via technology. He is almost 17. Life is often frustrating for both of us as he tries to communicate and it comes out as behavior and my tears as I have tried to figure out what he needs.

  19. Laura Kelly November 27, 2012 at 1:57 am #

    I couldn’t have said it better myself. Very touching and very encouraging. I’m going to go hug my son really tight now.!!

  20. Lynne.L December 10, 2012 at 9:47 am #

    Reading this has broken my heart, , humbled me, reduced me to tears but also made me smile!, but has mostly given me an understanding and hope. Thanks so much for sharing.xx

  21. Tracey December 10, 2012 at 7:28 pm #

    Wonderful, encouraging words that mean SO much to read. Thank you.

  22. Maria December 13, 2012 at 5:16 pm #

    I have a child who is hearing impaired and has a speech disorder. This truly touched my heart, made me cry. Very inspiring, thank you Sally.

  23. Beth Bailey December 20, 2012 at 12:55 pm #

    As a parent of two non-verbal children, these words are soothing to my soul. I’m so glad to hear things from this perspective of what it really important and needed and what is just added stress. Thank you for sharing this and encouraging so many parents out there. God Bless!

  24. Carmen December 21, 2012 at 12:16 am #

    Thank you so much for these special words and your perspective. You touched on everything I worry about on a daily basis.

  25. Janet December 22, 2012 at 4:10 am #

    I could have used your perspective 22 years ago. I had to learn it all — you have certainly hit the nail on the head. I am thrilled to say my child with CP insisted on playing basketball — I was fortunate he was boy number 3 — he never thought he couldn’t do anything and the only reason he was not as coordinated as his brothers was because he was younger . He always pursued what he wanted to (many inside groans from me but I let him and encouraged him) Very stubborn, very hard headed — and he graduated from college in May and has his first adult job. Everything you said we learned through the school of hard knocks and several times I could have just verbally annihilated insensitive stupid people but didn’t because I couldn’t change the world. He has always been awesome but sometimes it was harder to see than others. Thanks for such great insight and validation of our feelings.

  26. Johnny December 22, 2012 at 2:21 pm #

    Thx! This is priceless!

  27. Karen Anderson December 28, 2012 at 7:32 pm #

    Thanks so much for sharing your wisdom Sally. I think all parents of kids with special needs should read it! I would like to share it with parents on my website, Supporting Success for Children with Hearing Loss. May I have your consent to do so? Thanks again.

  28. Nansy January 11, 2013 at 5:08 pm #

    Like all the readers. lots of tears because i fell the same way, lately i ask myself how my son is going to do if something happens to me , i am everything for him his mom is everything i cant”t just imagine him without me.
    My son has cerebral palsy also and i love him no matter what. your words gave me so much courage to live and thanks for sharing.

  29. Erika January 24, 2013 at 5:46 pm #

    Thank you, I so needed to read this today. I copied this link so I can come back to it again when I need an upper.

  30. Brenda February 28, 2013 at 6:12 am #

    Sally today you made me a better therapist, and a better support to the parents and hearing impaired children that I support.

  31. Mary March 23, 2013 at 12:35 pm #

    Thank you for giving us a much needed roadmap for our life’s journey!

  32. Jiyoung March 25, 2013 at 12:28 am #

    Thank you.

  33. Gemma Maunder March 28, 2013 at 2:13 pm #

    THANKYOU for this! It will be a source of insight, understanding, comfort and strength to me as a mother each and every day and for always. THANKYOU for sharing such a beautiful message.

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