What a parent of a special needs child wishes her friends knew:

Allisonfamily

 

This is a guest post contributed by parent Allison Combs. The Combs have been married for 10 years and have two children ages 8 & 6. Their son was born at 32 weeks and later was diagnosed with Cerebral Palsy.

1. We feel alone. Please don’t intentionally or unintentionally exclude us or our children from activities with your children. Your children may be the only children that they can learn to develop friendships with. If a social situation doesn’t seem appropriate for our child, leave it to us to decide whether to attend or not.

2. Please don’t feel uncomfortable around us or our family because you don’t understand. Half the time we don’t understand either, but we need the sense of normalness that your friendship provides.

3. Let your children ask questions. It’s totally ok with us and we love answering and educating your children that ours aren’t that different from yours.

4. Sometimes we feel like venting about things we know you don’t understand. And it’s ok if you don’t know what to say. Just being a friend with an ear is all we need at times.

5. Our parenting situation isn’t all that different from yours. It’s still parenting and it’s still kids, we just have some extra things attached to our lifestyle.

6. Even though our lives may seem impossible at times (trust me we feel that way too!) we wouldn’t change a thing. If anything our special child has taught us so much about life, happiness, really appreciating the small miracles of everyday things. It actually makes us feel pretty damn lucky that we get to really appreciate all this that you may take for granted.

7. We get jealous. Yes I’ll admit that when I see a 1 year say or do something my 6 year old can’t do or say it sucks! Oh but when my 6 year old still does the sweet wonderful things that a typical child has long ago stopped doing, such as cuddling, petting my hair and looking at me with the most adoring eyes, it makes me appreciate my life anew every single day.

8. We are tired. And if I may not join in the monthly girls nights out, or miss a few social happenings it doesn’t mean I’m being a bad friend. It just means I may need some down time, or we have so much going on with therapies doctors appointments etc. But please don’t give up on us. We still love you and still need your friendship.

9. We worry. We worry all the time. About doctors, school, the future. And it’s ok. We know our future is yet to reveal itself, it’s all wait and see. And we know you know that too, and it’s ok to talk about it.


10 replies
  1. Angela Harding
    Angela Harding says:

    Very very beautiful and practical. What wonderful advice and I know lots of friends of those with special needs children would be pleased to read this advice.We need one another Thank you Allison

  2. Mary
    Mary says:

    We’re just like you “regular” folks…we have to teach, discipline, deal with everyday stresses just like you. We as parents of disabled kids don’t treat them any differently, love them just as much, and work hard to make their lives as normal as yours.

  3. Stephanie Gravley
    Stephanie Gravley says:

    My 10 month old was just diagnosed on Wednesday and we are still processing everything. I’m so glad I came upon this website. We are getting ready to navigate a world we know nothing about yet and will need all the help and support we can find.

    • cp daily living
      cp daily living says:

      Hello Stephanie and welcome. You may find yourself facing a variety of emotions right now and in the years to come. This is very normal. I am still “processing everything”. I hope you find comfort, support, hope, and helpful educational resources here.

      Sending you a big hug…
      Michele

  4. brett Fish anderson
    brett Fish anderson says:

    Wow, Allison, thank you so much for that. I recently started a series on my blog under the Taboo Topics tab looking at People Living with Disability or Special Needs and part of it was wanting to create some awareness [both for myself and others – i have already learned more about what asperbergers is for example and something of spastic cerebral palsy] but especially wanting to educate both me and everyone else – how to be around [in word and deed] people with different disabilities/special needs, knowing that it can be different person to person.

    My friend Lachlan contributed one of the first shares over here:

    http://brettfish.wordpress.com/2014/09/16/taboo-topics-living-with-disability-meet-lachlan-nicholson-spastic-cerebral-palsy

    But this piece is exactly the kind of thing i would love to have more of on the site so please let me know if you’d be up for a guest post or allow me to repost this on my blog

    Keep on
    love brett fish

  5. April M. Whitt
    April M. Whitt says:

    I appreciate your honesty and by reaching out-you will help many who are dealing with similar issues in their families. As a teacher of kids with special needs I often see the heartache and aloneness that many a parent feels. And I agree with you–there are many joys! And there are other types of difficulties you will likely never have to deal with such as having a phone call from your child from jail or seeing him or her try to destroy their lives in some foolish way. No, no one would ever choose to have their child be disabled in some way, but at the same time we all experience sorrows and difficulties and joys along the way.Let’s be there for each other. Thanks for sharing this with us!

  6. Mom2Four
    Mom2Four says:

    I don’t agree with #6. While I certainly recognize we have been blessed to learn from our child, I absolutely would change things for my son. I would change many things. And I totally agree with #7 – we get jealous, and what’s more we get mad, cause it isn’t fair. And yeah, no body sad life was fair, but it still sucks. I would add to the list #10 – please don’t give us your pity. Please don’t tell us “you’re sorry”. We’re working hard to make the best of things – help us by loving our child as much as we do.

  7. Ali Lewis
    Ali Lewis says:

    I have a 3 year old with a developmental delay. She learned to walk at 2 and still has speech therapy. We found out she has Apraxia and that is why she has trouble talking. This article is everything I have been feeling and felt since we found out what was going on with her. She also has sensory issues. My daughter is overcoming it and succeeding. She has Great Friends at Church and we have some Awesome Family that spend time with her and my son. My Hubby is Great with her too and understands what she is going through. I just Love this article and I know there are other families like mine doing the Best they can. You are All Awesome Mommy’s and Daddy’s.

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