Dear World

9 May

Here’s the deal – if you’ve never had a special needs child, do not tell us how to manage ours. Telling us to spank our kids when they’re “bad” is ridiculous. Telling us “Oh I know! My two year old does that.” isn’t helpful. Because your two year old? Will grow out of that behavior. My kid may not.

If you work with special needs kids, input given nicely is welcomed. Blind interference is not. Do not come up to me while my child is having a fit and try to help when you’ve never met us. I’m actually quite capable of handling my child, I have loads of practice. You have no clue what you’re stepping into and actually just making the situation worse.

If you have a special needs child, then you should be more sensitive to each individual situation. Do not judge my child by your situation. I don’t judge yours by ours. Because they are different. Also, this is not a competition. If you want to compete, I’ll let you win. Because I don’t want to win the “Who has it worse?” game.

To other parents – teach your children how to be kind to those who are different. This may mean you have to change your attitude towards my child. Because if you see my child as a little weird, your children will pick up on that and imitate that.

To teachers and principals – keep us special ed parents in the loop. Some of us have children who can’t tell us what happened in school. I should not have to find out about the bullying going on from my older child. It breaks my heart that children who can’t defend themselves are being picked on, especially after having my older child sign all these “anti-bullying” pacts and sit through “anti-bullying” rallies. My ten year old should not have to hear from friends how her little sister is being called a baby by other students. It not only hurt her feelings, but made her angry. And I couldn’t tell her “Oh, don’t worry, they’re taking care of it at school. It won’t happen again.” Because it did happen again. Right in front of me. And it’s happening to other students. And it just makes me both angry and sad. I was a child who was bullied, but at least I could defend myself. My child doesn’t have that ability, and her sister shouldn’t have to step in for her.

Dear government – if you force us to mainstream our moderately disabled children, then for God’s sake, give more funding to the schools who have to deal with them. Because many schools are not prepared for moderately disabled kids. They have to hire extra staff, get items that are not readily available in the school, sometimes build additions. You insisted on making Least Restrictive Environment a law, local districts shouldn’t have to pay the price for your decision. You should. Local districts shouldn’t have to choose between cutting something like art or shortchanging the special ed kids.

To all the teachers, aides, and therapists – Having a special needs child makes you a little insane. It might be the lack of sleep, the stress, the worry, or our child’s current repetitive behavior. We’re just trying to do what’s best for our child, and many times we hear “You have to fight! They’re the enemy! You have to be a warrior!” And we buy into it. Thank you for putting up with us when we’re crazy. And I say this as one who has admitted to turning into “That Parent” at one point. What you don’t always see is how when we’re in the privacy of our own homes, how we may burst into tears because we just don’t know what’s going to happen to our child. That we’re somehow failing our child. And we’re embarrassed when we are caught in our weak moments. We don’t mean to be crazy – it just ends up that way.

Dear Doctors and medical staff – please understand that we may be crazy at times, but we’re also the expert on our child. All we ask is that we’re taken seriously, or at least at face value. Do not brush us off. You have no clue what we sacrifice to afford to see you. And in an emergency room situation, for God’s sake, listen to us when we say “My child doesn’t understand.” That’s not some secret code for “Please, talk to my child like they’re a competent 24 year old.” It means “My child does not understand and is going to freak the shit out on you when you start poking them with needles.” And if I tell you “My child’s going to freak the shit out when you pull out the needles and flail a lot” – don’t think I’m exaggerating. Get that extra person to help hold them down.

And for the Love of All that is Holy – do NOT criticize us for not holding our child down well enough. It is mentally painful for us parents to have to hold that child down when we know they’re going to be caused pain. Our child will look at us and wonder why we’re letting you cause them pain and not understand. Sorry if I’m not perfect at it. That’s really your job.

And to the teachers, therapists and school staff who have gone the extra mile for us, the store clerks who have dealt with us with patience and a smile, the other parents who have commiserated with us, listened to us, invited our child over to play, the doctors who have listened to us, the children who have treated our child as a friend, to those with a kind word or smile – thank you isn’t enough. We are grateful for every kindness, every effort, every time our child and family is treated as normal and feel blessed to have people like you in our lives.

Love,

the crazy lady with the special needs kid

(this is another older blog entry from another blog I wrote – I was thinking about some of this lately, and thought I’d repost it here.)

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26 Responses to “Dear World”

  1. Angie May 9, 2012 at 9:36 am #

    Wow! You completely hit the nail on the head today for me. Thank you for posting this I needed it. Getting ready for IEP meetings this helped alot!

  2. Angel Brookins May 9, 2012 at 9:48 am #

    Thank you so much, Phoebe, for reminding us that sometimes what a person needs most is simply to be treated like a person. That simple gift of humanity from one human being to another can be lacking in our society, to the detriment of very special little angels like yours, and the wonderful families that love them.
    I am so sorry for any time that I have been callous in my own life, and harshly judged the parent of a child that was having a temper fit in a grocery store. Thank you for opening my eyes, once again, to my own character flaws and unperceived insensitivites. Thank you.

  3. Renee Anne May 9, 2012 at 9:48 am #

    AMEN!

    I think this could be connected to children in general, not just those with special needs. Well, some things…

    The one that really sticks with me is the bit about medical staff. My son has a metabolic disorder and it isn’t something that you can “see” so when we bring him into the ER because he’s not eating, don’t make us wait 4 hours before putting an IV in. We don’t have an ER protocol because we wanted one, for Bob’s sake! Do not make us call his metabolic doctor. It won’t be pretty and someone will probably be reprimanded for it, if not outright fired.

    Also, I think parents forget that kids mimic what they see because it’s a way of learning. So, when they see their parents acting strangely around people with special needs, they will mimic that and eventually, they will just be that way without any understanding of “why.”

    ::sigh::

    And we wonder why bullying is a problem.

  4. Laurie May 9, 2012 at 9:51 am #

    Wonderful post!!!!!!

    Angie…good luck with your IEP meeting!!!!

  5. Suzanne Young May 9, 2012 at 9:52 am #

    Well said. I agree totally.

  6. Sharon Hoover Weidemann May 9, 2012 at 10:25 am #

    Well said. I can’t remember how many times I myself have spoken about becoming a psycho mom due to many of the very things you have touched on. Blessings to you as you continue on your journey.
    Sharon

  7. mysending May 9, 2012 at 10:32 am #

    Can I reblog this, please? This is such an important message.

    • phoebz4 May 9, 2012 at 11:48 am #

      I’m fine with it as long as I get proper credit and linkage :)

      • mysending May 9, 2012 at 11:50 am #

        of course!
        thanks.

  8. Wendy Carroll May 9, 2012 at 10:38 am #

    Absolutely. A thousand times over. If I may add one: to relatives: please stop thinking that you can cure my child. Years of therapists, doctors, special ed teachers and other trained people have not succeeded. Believe when I tell you that “one week with you” will NOT change his behavior. The implication is that I’m a failure as a parent. I resent that..

  9. Aspen May 9, 2012 at 10:54 am #

    Absolutely. You laid it on the line, and it all needed to be said. Unfortunately, repeatedly.

  10. saracvt May 9, 2012 at 11:06 am #

    Thank you for putting into words what I could not. And, Wendy? YES! We have some grandparents who refuse, absolutely refuse, to believe the autism diagnosis, and insist that it’s just “Olivia being Olivia” (which it is, but…) and that my husband and I are just too lenient. They think that the one week every summer they get the girls will whip her into shape. ARRGGH!!!

  11. mrskelly5 May 9, 2012 at 11:10 am #

    Hello! I want you to know that I enjoy reading your blog immensly. I also have a daughter with special needs so I am able to relate to much of what you write about. Thank you so much for sharing!

  12. mysending May 9, 2012 at 11:51 am #

    Reblogged this on But Mostly Hers and commented:
    Herding Cats should know and we should listen.

  13. Penny Kuehlman-Diehl May 9, 2012 at 1:17 pm #

    Thank you, thank you, thank you!!!!! I couldn’t say it better myself.

  14. Angie Clark May 9, 2012 at 1:51 pm #

    I agree with everyone—THANK YOU for putting it into words!!! I actually cried! I am so tired of being questioned and given advice- I know what to do –I am living and managing and doing it! Your blog has really gave me perspective and inspiration !! Thank you so much!!!

  15. lexiemom May 9, 2012 at 3:12 pm #

    I have a very good friend with a special needs child, and I always feel like I don’t do enough, don’t know enough, can’t really help. Her daughter is the sweetest little girl, but I see how tired my friend gets…all the time. I wish I knew how to help. Any suggestions?

    • phoebz4 May 9, 2012 at 3:34 pm #

      Give her a break – literally. Maybe offer to take her out for a girl’s night. Or offer to babysit (it’s very hard to find sitters for SN kids). Go over, tell her to take a nap and do her dishes, or help fold her laundry while you watch a chick flick rental. Let her talk when she needs to talk. Sometimes, you need to get out of the house. Sometimes, you need help in the house. If her child’s sick, bring them dinner. A friend of mine offered this just the other week – I didn’t take her up on it, but the offer itself meant the world to me.

  16. Sheila Weinberg-Cowdrey May 9, 2012 at 3:14 pm #

    Phoebe, You are such a positive warrior! You speak for all of us who have a special needs child. I thank you so much for your posts.

  17. Life's Unexpected Blessings May 9, 2012 at 4:28 pm #

    I truly love this post! Thank you for saying what alot of us feel but cannot always put into words!!

  18. Heather May 9, 2012 at 7:37 pm #

    I’m so glad you’re out there Phoebe and I found you, your blogs always help me feel that I’m not alone. Wendy Caroll i couldn’t agree more about people and their advice. They think they helping (or they’re just nosy) but the implication is they think we’re not that bright and ooh, that gets me. Cheers all, let’s keep fighting the good fight!

  19. Jan May 9, 2012 at 8:45 pm #

    Amen and amen

  20. Kim May 9, 2012 at 9:14 pm #

    You are so right!! My son adopted a special needs child, who is non verbal and wheelchair bound, but he is a huge blessing. I also work in a class that we call adapt at one of our middle schools. These children have all kinds of disabilities, but I love it! My son calls these children “angels on earth”. I do think they really are!!

  21. doulaaimee May 9, 2012 at 9:46 pm #

    Thank you SO much for your wonderful and beautiful blogs. You manage to perfectly put into words so much of what I am feeling. Thank you for speaking for all us “crazy moms” who walk this path. I have experienced the comparison syndrome with my sister. She had a baby last year and is always comparing her infant to my 12 year daughter who is MR/Autistic. As you said her baby will grow out of her stages where my daughter very well may not. My husband and I have also had relatives tell us we were not “parenting our daughter correctly”. It is forever hard to explain things over and over to people.
    Thank you for sharing your life with us!

  22. Ann Oliveira May 9, 2012 at 9:52 pm #

    Bravo! That is how we feel every single day! Email me if you like I would LOVE to chat with you!

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  1. Imperfect Motherhood | HJ Underway - May 11, 2012

    [...] Phoebe @ Herding Cats {Dear World} [...]

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