Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

How To Be A Friend

with 6 comments

When Pudding was first diagnosed, many of our friends asked us what they could do to help, and we were completely at a loss to suggest anything.  We didn’t have a good enough grasp ourselves on all the issues surrounding an autism spectrum disorder.  Also, to be perfectly candid, I went through a phase where only I could do anything regarding Pudding.  But we did need help, in many ways.  And we were lucky that our friends found ways to assist us.  Two years on I can identify some of those ways we did, and still do need help.

Here is what our friends did for us.

Waited for us to talk

Keep calling or emailing us.  Even when we don’t reply.  Especially if we don’t reply.  Right after the diagnosis I was too frantic and preoccupied to keep in touch properly.  I’m still grateful for Facebook to let me reach a number of people at the same time.  Remember that a lack of response probably has little to do with you, and a lot to do with other demands on the parent’s time.

Try to gauge if and when your friend is ready to talk.  I’ve described the first few months post-diagnosis as losing my voice.  It took some time to accept the different route our life was going to take, and I wasn’t ready to discuss that immediately.  Don’t be hurt or upset if your friend doesn’t immediately turn to you for support.  My friends were patient enough to wait, and I opened up when I was ready.

Babysitting

We have struggled from the beginning to find a babysitter who would be mature and responsible enough to take care of our kids.  To make matters worse, they both have extreme separation anxiety.  A couple of our friends have come over to sit with the kids once we got them to sleep so that we could sneak out for a date.  They’ve arrived early so that if the kids did wake up, they’d feel more at ease knowing who was in the house with them.  Because our kids already knew them, we felt comfortable leaving.  Parenting special needs children often means that couples don’t get time to themselves, which leads to even more stress.  We can’t thank our friends enough for the times they’ve done this for us.

Bringing a date to us

When Spectrummy Daddy was in Afghanistan, Pudding was already on edge and leaving her at that time was out of the question.  One Saturday night, a couple of friends came over with take out and dessert to take my mind off things.  I’m sure they had better things to do on a Saturday night, but I’ll never forget their kindness.  If you have friends who just can’t get out- go to them!

Keep inviting us

I’ve lost track of how many girls’ nights out I’ve missed.  But once in a while, if a relative is visiting, I manage to get out and catch up.  Those times are a tonic.

Our friends have also continued to ask us to things as a family.  We’re lucky in that Pudding still enjoys parties, so we have been able to attend for the most part.  Our friends have also been very generous about providing allergy-safe foods and activities that are suitable for my kids.  A big point here is that they aren’t afraid to ask about what our kids do and don’t like, and I’m not reluctant to make an exit if it becomes too overwhelming.

Pudding is difficult to engage, particularly in social or chaotic environments.  I’m always grateful for the friends who keep trying with her.

Play Dates

Our kids need to spend time with typically-developing peers, and many are in self-contained classrooms, particularly when they are very young.  Our friends who had a child close to Pudding’s age have been great about encouraging play between them when our schedules permit getting together.  Pudding learns things from play dates that I could never teach her as an adult, nor would she ever learn spending all her time with other kids on the spectrum.

Learn about our kids

I’ve lost track of the number of times a friend has sent me a link to an article about autism, or even a photograph of the White House fountain.  Several of our friends read my blog, and get to learn a little more about the girl who only seems to talk in repetitive sentences when they’re around.  You needn’t write a blog, but take the time to describe what makes your child tick, and what leads to overload.  It took me a few months to become open to talking about Pudding and autism to our friends, but I have no regrets that I did.

Bought from our Wish List

Almost every time we speak to a teacher, therapist, or fellow parent, we learn about some new thing that our kid needs.  Therapy equipment is expensive, and our kids are still kids too.  They like toys, a lot.  Because Pudding likes extra stimulation, we use a lot of new things to keep her interested and engaged.  Friends have bought things like the sit ‘n’ spin and bead toys for sensory input for birthdays and Christmas.  They’ve also bought things I wouldn’t have thought of that have been very beneficial, but more importantly- fun.  Our friends and family have made sure that the kids toys aren’t all about learning, but princesses and trains too.  The only downside?  I never get a chance to write all my overdue thank you cards.

Do it from a distance

Admittedly friendships are harder to maintain from a distance.  But special needs parenting can be isolating, and any way you find to show a friend you are will mean more than we can express.  My friends have sent packages of chocolate and little gifts to show they still think of me.  Even a postcard or letter lets your friend know you care, though you are miles apart.  That way we still feel like we’re part of a community.  Facebook, Twittter and Skype are great ways to keep in touch.

More ways to help

Meetings

If you are able to do so, come with us to important meetings and appointments.  Even after a few IEP meetings, Spectrummy Daddy was unable to leave work, and I was intimidated by the number of people in the room for Cubby’s IEP eligibility meeting.  Even if you don’t know anything about what is being discussed, your presence would be a great source of support.  Alternatively, taking care of the child or sibling would mean one less worry for the parents.  If you can spare a couple of hours, it would make a huge difference to the stress of the day.

Siblings

Remember the siblings.  Often we have to prioritize the child with the most demands, and the other one gets overlooked and forgotten.  Be sure to focus on the sibling so that they don’t learn that the only way to get attention is by imitating the behaviors of their brother or sister.

Food 

Many kids on the spectrum have problems with food and dining out.  Some are very sensitive to textures and smells, meaning that only a few foods are tolerable for them.  Many children can’t handle the noise and activity of restaurants and food courts.  Still others are only comfortable in very familiar environments.  And then there are those with food allergies or intolerances who need to eat a very restricted diet.  If you are the parent dealing with the food issues, I promise that it soon gets unbearable.  If the family are willing and able to get to a specific place to eat, consider taking them out for a meal, or buying them a gift certificate for a meal there.  If not, find out about their list of okay foods, and prepare a meal.  Even one meal less to worry about would be a godsend, and you might even develop a taste for extreme cooking.  Not that I have.

That was long!  Please let me know in the comments any ways your friends have helped you…or ways you’d like them to help.

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Written by Spectrummy Mummy

June 21, 2011 at 8:26 am

6 Responses

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  1. Just wanted to second what Spectrummy Mummy said about how good our friends have been about being there for us these past two years. Thanks for your help and caring about our family.

    Spectrummy Daddy

    June 21, 2011 at 9:20 am

  2. we’ve also been blessed with wonderful friends. this is an excellent list! and b/c i love food, i have to say that “bringing a date (or meal) to us” has been one of the best things friends have done for me.

    rhemashope

    June 21, 2011 at 9:58 pm

  3. This is really great- being a friend is a learned skill! thanks for the advice.
    I’ll be following your blog!
    -Penelope
    rethink autism

    info@rethinkautism.com

    June 22, 2011 at 12:22 pm

  4. Hi Spectrummy Mummy! I really appreciate this last post, I need to remember my friends more often. I’m orchestrating a newsletter, and was hoping that you would either 1) Let me enter this blog post as an article, with you as author or 2) Let me paraphrase some of the material… I think it’s a really good thing to get out there! Remind folks what their friends do, what they can ask for, and perhaps remind some of these ‘friends’ what they can be doing for us challenged-parents… What do you think? email me: daleth_mccoy @ hotmail Thanks sooo much!

    Anonymous

    June 23, 2011 at 1:07 am

  5. Hi Mummy! I love this post. I needed to be reminded of these things, for many reasons! I’m orchestrating a newsletter through an online autism support group I belong to, and I’d love to know if you would mind letting me do some paraphrasing and writing a similar article, more geared to letting friends know what they can do to help those they care about that have our ‘parenting challenges’. :) This is a wonderful collection, and I certainly understand if you’d rather not vicariously participate… Please let me know, you can find me on FB Daleth McCoy… Thanks so much!

    visionofautism

    June 23, 2011 at 1:14 am

  6. Love this one! And I love the wish list idea. I’ll have to do that! :)

    Aimee Velazquez

    June 23, 2011 at 9:07 am


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