5 Ways to be a Good Friend to a Mom of a Child with Special Needs

A few months ago, my best friend invited me to speak to her MOPS (Mothers of Pre-Schoolers) group on the topic of "How to be a good friend to a mom of a kiddo with special needs."

I was thrilled at the prospect of getting to share on this topic! 

Over the years I have thought a lot about how grateful I am for all of the things (big and small) my close friends have done to be a good friend to me and hang in there with me through all the hard times. My plan was to speak about my own experiences - but I decided it would be a more valuable conversation if I could offer to my audience the perspectives and experiences of many moms of kids with special needs. So, I put a call out on Facebook to my all of my "special needs moms" friends and asked them, "What have your friends done over the years to be a good friend to you?"

Based on their responses, I've put together my Top 5 List of Things You Can Do to be a Good Friend to a Mom of a Child with Special Needs!  (Drum roll please....)

5. Teach your kids about my kid.

For a lot of us, (and this can of course vary), but for many of us, our friend's kids are the only friend's our kid has.  This is true in our case.  I am SO dependent on my friends kids to be Julia's friend. 

It means so much to me to have close friends who have done a good job of talking to their kids about Julia, teaching them about how to be her friend and making them feel comfortable when they are around Julia.  

This means my friends have had all the tough conversations with their kids again and again in order to help them understand and keep Julia fresh in their minds so that when they see her they are more comfortable with embracing her.  I can hardly put into words how much this means to us - to have little friends who move towards Julia rather than away.   Because out there in the world it can be really tough to be a kid with special needs and find kids who comfortable being your friend.  

We need our friend's kids to be our kid's friends, so if you will put the work in to helping your kids love my kid, then you have been a really good friend to me. 

4. Offer to learn about my kid.

One of the things several moms mentioned in response to my request is that they really appreciate it when friends have asked "How can I learn more about your kid?"   "Is there a book I can read about the diagnosis?"  "Is there a video I can watch that will teach me more about what you are working on or going through?"  

Friends who want to know more about the nitty gritty of what we are going through stand out to us!  

In my own life, I've had friends ask, "Can I watch a video of her seizures so that I know what they look like?"  "Tell me what to do if I see a seizure so I can help her and you."  

Other moms mentioned it has meant a lot to them when friends offer to learn how to take care of their kid so they babysit.  This means a ton to mom's like me because most of us aren't comfortable leaving our kids with hardly anyone because our kids are so complex.

Another example a fellow mom shared was that one of her friends asked her "What can I do to make my visits less anxiety provoking for your daughter, tell me how I can come over and make it easier on her."

One more thought on this particular strategy, I've found it to be especially touching when a friend has shared with me how they have done something differently because of what they have learned from us - for example, my friend told me that she saw another special needs family at the park and in the past she might have just not done anything or thought the best thing to do was to not interact, but because of our relationship and all we had talked about over the years, she knew that she should reach out and just say hi, so she went over and talked to that family!  

Letting us know how our story has impacted your life can really be a boost!  

3. Let us know we are not forgotten.

The overwhelming tone of the feedback I received on this topic is that so many moms of kids with special needs feel forgotten.  Sometimes it can feel like the world is passing us by and we are still here, doing our best, but we feel like no one remembers.  

And I get it, I really do.  Normal child development puts you with other families who are also experiencing normal child development.  For most moms, your social world revolves around the connections your kids make with other kids - this makes sense. But for moms of kids with special needs (and dads and grandmas and grandpas...), you don't have those natural connections, or they are so much harder to find - so that can lead to feeling like the world is moving on without us.

I had a friend ask me one time "How can I be a good friend to you?"  

My answer was, "I'm just afraid we are going to be left behind by everyone."

So all that to say, anything you do to remind a mom of a child with special needs that you remember her, is so valued!  Texts, messages, cards, gifts - any of those things may not seem like much or may seem fairly simple really do matter!  

To a mom of a kid with special needs who is feeling lonely and forgotten by the world, your attention in any form can be huge!  I can't say enough how ongoing reminders of "Hey there, I see you, I remember you!" can mean to a mom like me.

2. Show up and listen (no answers or advice needed).

Please, please, please just show up! Swing by, say hi - that's all we need!

You are off the hook in terms of needing to know what to say or have any answers - we don't know the answers anyway - it's all unchartered territory for the most part.  But if you can just show up, ignore the chaos, ignore any bad behavior coming from our child, and just sit with us and listen: let us vent, let us cry, let us brag, let us whine - you will be giving us such a gift!  If you show up in your sweats and bring chocolate even better!  But mainly just having a friend who can sit and listen, who will validate the tough things we are going through, without giving advice, is invaluable!  

We all need this - right?  Moms of kids with special needs just really, really need it - and most of the time we are dependent on you coming to us in order to get it.  So please, swing by, show up, hang out for a bit - lend us your ear, show us some love - in doing that you are being such a good friend to us!    

1. Invite us - please, please invite us!

The overwhelmingly NUMBER ONE thing you can do to be a good friend to a mom of a child with special needs is to INVITE HER to things.  Invite her, invite her family - just invite!!!!   

She probably won't come.

Her family probably won't come. 

Don't be offended - just keep inviting them!!!!  The invitation matters!

There is nothing more meaningful to moms like me and families like ours than getting that invitation. It goes with some of the other things already mentioned on this list - like reminding us we aren't forgotten and helping your kids be friends with our kid - that invitation means SO, SO much!   And over the years the invitations tend to stop. Friends assume you can't come or your child wouldn't be able to attend (which could be very true), so they just stop asking. And this then fuels that cycle of loneliness.

So, if you really want to be a good friend to a mom of a child with special needs, just keep inviting her to do stuff - and don't worry if she can't come, leaves early, or cancels last minute because her kid is having a tough day - that is just what happens - but know that you have done the meaningful part by extending her that invitation!!!! 

~~

Thank you to everyone who took the time to read this list and consider this topic! This has been a great reminder to me that I can always do a little more to care for my fellow moms. And you may not even currently know a mom of a child with special needs, but I guarantee you know a lonely mom - and any efforts you make to show her love will matter to her!  

We cannot go wrong trying to care for each other.

~~

Below are the unedited (except for names) responses I received. The words of my fellow special needs moms speak volumes:

I think this comes with both what not to do and what a person can do... I hate when friends ask 'well, can't you just____' when they don't understand why it's hard for us to take S. out of the house, that there's nowhere to change her, etc... they'll say 'well, can't you just change her on the floor' or 'can't you just carry her up the steps to get into somewhere... like if it were that easy, we hadn't thought of that already (we just do this every day of our lives). What a friend can do is: being incredibly understanding when a special needs mom has to cancel plans, isn't available much, be happy/content to just visit with coffee in sweats if that's all their friend has the energy for (because chances are they've been sleeping every night for years whereas I for example haven't slept more than a couple to few hours at a time for EIGHT YEARS). It's also nice when friends/family send cards to S. or me,  just letting us know that they haven't forgotten about us is nice because many of our friends have unfortunately and we never hear from them anymore.

Don't exclude us... we may arrive late to something, or have to cancel last minute, but that doesn't mean we don't appreciate being invited to things...

This is my big one. My friends continue to go out and do things. When I see a picture or hear about it they are like well we didn't think you could go. Key word "think". Why not ask me and let me say no I can't but thanks for the invite. Thanks for including me, thinking of me or remembering I'm here.

Invite us - even if you don't think we can come. Also, don't tiptoe, just ask the questions!

Just listening, but not proclaiming they "understand." I've had a friend compare having a child that's a toddler to what I go through. But a friend that just listens and is there to offer a hug and encouragement (preferably brings Diet Coke and chocolate) is worth its weight in gold!

I miss the simple things, like a phone call to see how I'm doing, I miss coffee dates, I miss a friend that says can I pick you up anything from the store, I miss hugs when you get bad news, I miss human interaction, I miss being included, I miss being thought about... I'm not sure friends really exist for people like us anymore. I'm starting to lose my faith.

Don't sweat the behavior issues that come with our challenges. Tell your own kids, and set the example of not showing shock and discomfort... please. These infractions are small potatoes for a kid (and mom) who needs to be loved by you. We have to pick our battles. Chances are I correct him for it constantly and just need a break to ignore it for time to visit with another adult!

If I'm whining, just let me whine about the latest thing this week. But don't give me the whole pity party, just pretend you know what I'm talking about. I'll get it out and then we can get on to more normal conversation. I've always had a ton of respect for those I have found along the way that don't know an ounce about what's going on but are willing to let my whine and moan without pity in their voice or the wow shock factor in what is going on. For us it's normal.

Offer to learn what you need to do so that you can watch the special needs kiddo even for an hour occasionally. It shows that you care about both the mom and the kiddo. 

I had a friend ask if there were any books she could read to her son to help explain why my son needs a wheelchair, that was nice.
-just check in on us once in a while, even if it's just a text. And sometimes it doesn't have to be all about the kids either. Because we can't go out as easily means we do get forgotten sometimes.
-from the other side, I often have to remind myself to do some of these things in return. It can be so easy to get stuck in my own bubble...I need to do better at that!

I second this one...I had a friend check out some books at the library just so she could learn more about what our lives are like.....that was so special to me and has given us new topics to talk about when we do have time to visit.

Bring wine and Kleenex and an open ear. Not to give advice, but to give an ear

I say bring some coffee (and cookies or other treat) and just come spend time with us. We need regular adult conversation.

Just come by and sit. Don't worry that the house is turned upside down or worry we are busy. Just come. Just text to say you care. Two seconds of your time goes a long way for emotional support to me.

Sometimes I just need someone to listen and agree with me that it sucks that my son has kidney disease and it just doesn't seem fair. Every now and then you need that vs. "everything is going to be OK" or "he will be fine."
I also appreciate when people ask me/are interested in knowing about T.’s health issue. Don't be afraid to ask questions...it shows that you care and are interested!!!!

Give the parent of the special needs child lots of grace.

I just want to feel like a "normal" mom...I want to commiserate...share successes and challenges...even if they are different

A couple of things that have really helped me....sending me a text message when they saw something that made them think about me...text me an encouraging quote or personalized verse....ie: S. can do all things through Christ who strengthens her.....offering to stay up late so I can call them after my son is in bed...the best time for me but too late to call on the spur of the moment cuz it's after 10 pm, giving me a paper flower arrangement...brings color and beauty into my life...but I don't have to take care if it.....dropping off a frozen dinner or dump dinner kit....that I can make on one if those nights when the day hasn't gone as planned....and being invited - and understanding that I may not be able to respond on that first invite...but that's really just my life that's keeping me being able to...your understanding and still pursuing me is sometimes my only life line. Oh and if I ask you for help with something that you can't do please say no...and then offer to find some one for me who can...take the search for help off my hands...that is a huge help.

I really believe that the most powerful way to be supportive is to just acknowledge that what they face is hard. No platitudes. Be a listening, non-advice giving (unless actually asked for) ear. Notice if a mom is silent when around "typical" mom conversations. There are so many times I have nothing to contribute because 1. my experience is so different than typical or 2. I will be a major debbie downer. Also- I had a friend who just dropped off a wine bottle labeled "for emergencies." It's little things like that- meals during particularly hard times. funny memes. quick messages of "I am thinking of you" etc. etc. Just showing up. And not judging. We are all doing the best we can.

Knock on my door and bring me a cup of coffee. Offer to do things at my house (like bring the party to me). I often feel guilty to leave L. but wouldn't mind just having a grown up conversation. I have an amazing friend that drops by with a ballon for L. and a bottle of wine for me. She gets that I am not always in the mood to hang out or can't because I am busy with L. but is cool with just checking in for 20 minutes with me.

 I have a friend that has sent our family gift cards to different restaurants every month for over 2 years (since G.’s cancer diagnosis) to help ease some of the burden at home. This has been the BIGGEST blessing when facing doctor appointments, school pickups, sick days or just exhaustion.

Let my kid spend some time with yours 
Ask how to deal with my son should a situation arise.

1. Invite my kids to typical kids party and include them in the activities.
2. My daughter with autism sits with a young couple at church. She loves it and it's also a huge break for us.
3. A friend would pick up my kiddo at school and hang out with her for an hour or two every few weeks.
4. A couple of friends have given my daughter piano lessons. She loves it and feels so proud of herself.
5. Acknowledge that my kids are different but love them for who they are.
6. Cry with me on the hard days and celebrate with me the small victories.
7. Advocate for others with disabilities, let my children inspire them to make a difference.
8.Pray for my kids with disabilities their typical siblings and my husband and myself. Special needs are challenging to the whole family.

1) Always inviting us to events/activities AND never taking it personally when we decline because the invitation/event doesn't work for our family. Let us make the decision about what we can or cannot do.
2) Treating our child just like any other child.
3) Accepting our entire family without our daughter's disability being a THING. We're different, our friends know that, accept us anyway and don't make a big deal about our differences.
4) Listen with love.
5) Don't judge.
6) Focus on the positive, what our child can do, learning to do, etc.

The #1 thing that my friends have done for me is include my daughter in activities with their kids. It absolutely makes her happy. Most of the time other kids will not play with her because she's different and does not talk. It breaks my heart. My friends kids will take her by the hand and help her.

Teach your kids that compassion is cool. Helping others is cool. Sit with our kids at lunch because someday they may just be their boss or co worker.

Being eager to learn all they can about my child's disability so they can understand how best to support her and us.

My WHY

Yesterday I signed up for a weight loss challenge at my new gym.  I know, I know - super cliche' to sign up for a weight loss challenge in January... but I actually thought it would be fun.  I like group challenges and I'm just a teeny-tiny bit competitive - so I figured this was the kind of thing that might help me kick start the new year and lose those few extra pounds that, while not important in the grand scheme of things, do bug me a little.

Part of signing up for the challenge was filling out a questionnaire about what was causing us to want to participate. What was our motivation? What was our WHY?

That's easy. It's her. It's always her.

"I have a nine-year-old daughter with special needs." I wrote, "She needs me to be healthy and strong for her - for many, many years to come.  She is my WHY."

And it's true.
When my heart is about to explode but I'm pushing plus on the treadmill speed, she's my why.
When my muscles are shaking but I'm reaching for heavier weights, she's my why.
When I'm woefully chewing on a celery stick instead of enjoying a plate of pasta, she's my why.

I want to be healthy for her. Strong for her. Feel good about me, for her.

And it's not just my physical body she motivates me to improve.
When I'm implementing new strategies to manage my escalating anxiety, she's my why.
When I'm resisting my natural impulse to get angry with people who frustrate me, she's my why.
When I make myself vulnerable by speaking against the injustices I see, she's my why
When I risk disappointing people by saying no to things, and I hate disappointing people by saying no to things, she's my why.

I want to be peaceful for her. Joyful for her. Brave for her. Rested for her.

I have the honor of being the mom to this incredible little person who will need my care her entire life.
And there is no more motivating WHY in all the world than to be able to do that for her.

She will always be my WHY!

Better Off Dead

Julia's favorite album right now is Tom T. Hall's Songs of Fox Hollow.

She walks around the house holding her iPad up to her ear like a boom box, using her nose to navigate between songs like "Sneaky Snake," "How to Talk to a Little Baby Bird," and "I Wish I Had a Million Friends." It's a super cute album, very catchy - but she's been listening to it so much lately it's almost become white noise to my ears.

EXCEPT for one certain little song. "The Song of the One-Legged Chicken..."

It goes like this:

A one, two, three, one, ready play~

Do you like true stories? I do

That's why I'm singing this song

The song about the one-legged chicken, 

who lives in the straw on the floor in my barn

I remember the day she was hatched out

The vet came to see her and said, 

"That chick has just one leg, she'll never grow up. 

I think that she would be better off dead."

I said "No! Let's just let her keep growing, 

we'll just wait and see how she gets."

Before very long she was hopping 

and pecking and chasing the bugs with the rest

Now she is a beautiful chicken, 

though she has only one leg

When I go to see her each morning, 

she hops from the nest and she lays me an egg

And she cackles - booook, bok, bok, bok

Do you like true stories? Well I do, 

that's why I've sung you this song

The song about the one legged chicken 

who lives on the floor in my barn

And suddenly the white noise clears and I am hearing a true story. Not the one he is telling - about the sweet little chicken - but a different true story about a different little chick I happen to know. 

It's the song of my sweet, little Julia... 

Do you like true stories? I do

That's why I'm writing this song

The song about my sweet, little Julia,

who shows us every day that different's not wrong

I remember the day of her ultrasound

The doctor looked inside her head,

"You may want to consider aborting."

(He might as well've said "She'd be better off dead.") 

We said "NO, let's just let her keep going

We'll just wait and see how she gets."

Before very long she was breathing,
and growing, and learning along with the rest  (of us)

Now she is a perfect, sweet daughter, 

although she is not like the rest.

When I go to wake her each morning, 

she gives me a smile and I know I am blessed. 

And she giggles. Heee! He! He, he!

Do you like true stories? Well I do

That's why I wrote you this song

The song about my sweet, little Julia,

who shows us that different's not wrong

Julia Anne 9 months

Julia Anne 9 years

I Remember Nine

Today Julia turns nine.

Every birthday brings about its own unique set of emotions - this year I find myself as reflective as always, but not just on Julia's life, on my own.
Because I remember nine.
And not just fragmented, isolated, snap shot memories of nine. I REMEMBER nine.

I remember starting third grade at a new school.
I remember being the new girl.
I remember feeling lonely.
I remember adoring my third grade teacher, Mrs. M, and hoping she would like me back.

I remember being boy crazy,
I remember being mean to the kid in my class whom I thought was weird.
I remember loving horses.

I remember walking through the hallway one day thinking "I wish I could walk like a horse."
So then I tried.
And one of my classmates who was not yet my friend, tattled on me to the teacher I adored:
"Mrs. M!!!! Laurie is walking weird!!!!!"
I remember glaring at her thinking, "You don't get it, I just want to walk like a horse."

I remember finally making a friend.
And I remember the relief of finally making a friend.
My new friend introduced me to her best friend.
And my new friend's best friend loved horses just like me.
So they added me to their pair.
And I knew I was the third wheel but I didn't even mind, because now I belonged somewhere.
And I remember how good belonging felt.

And at recess when everyone else played on the playground, we went to the very back corner of the school's property and played horses.  Our little corner was the stable and we had to take care of our horses and ride them and make food for them - which we did. Horses love mud pies in case you didn't know.

And then one Sunday afternoon I remember my mom asked me to take a walk with her. And we sat down on a bench and took our shoes off, which I thought was kind of fun.
And my mom told me that sometimes really sad things happen.
And that my friend's best friend who was now my friend, who loved horses as much as I did, had fallen off her horse...

And I remember my first funeral.
I remember waving to the boy I had a crush on as we walked down the center aisle of the church to find a seat.
And my mom told me not to wave at boys during a funeral.

And when everyone started walking up to the front, I remember my mom saying "Sometimes it's better not to look," but I wanted to look.
And then I remember thinking my mom was right.
Her face was too pale and I couldn't see her freckles.

The next week at school, I remember her big sister came into our classroom to clean out her cubby.
I remember no one said anything to her.
And I thought we should say something to her.
But no one said anything.

And weeks later at my horseback riding lesson, I remember being told I would be riding the horse today.
Her horse. The one from...
I remember being terrified and then feeling ashamed for being terrified and then telling myself I should try to be brave.  And so I tried.  But my lesson ended early that day. And my parents weren't even upset. They said it was okay to end early. They said I didn't have to ride that horse again.

And I remember I didn't ride any horses again for a long, long time.

I remember making more friends, some that would last the rest of my life.
I remember having more crushes.
I remember slumber parties and best friend necklaces and favorite books and hurt feelings and continuing to be mean to the kid I thought was weird.

And I remember thinking about her...
The girl we lost when we were nine, who decades later came back to us as a hurricane...
My new friend's best friend who loved horses just like me.

I'll always remember nine.

Outlier: The Data Point I'd Like Thrown Out

Next month, Julia turns nine.   

And besides being an accurate measurement of the amount of time Julia has been breathing oxygen on this planet, what it means for Julia to turn nine and what it means for a typically developing child to turn nine have absolutely nothing else in common.

Julia Anne, 8 years 11 months

I don't even know what it means for the majority of the world to be nine.
I had to look it up. 

And according to webmd, here are some things to know about typically developing nine year old humans:

• They grow about 2.5 in. and gain about 7 lb in a year.
• They can read and understand longer sentences up to 12 words.
• They can add and subtract 2-digit numbers, understand fractions, and are learning how to borrow and carry values.
• They like organization and planning, such as making plans ahead of time with friends.
• They think independently. Most children are improving their decision-making skills.
• They can accomplish increasingly more complex tasks and projects in school, such as book reports.
• They recognize basic social norms and appropriate behavior.
• They can control their anger most of the time.
• They have caring, solid friendships.
• They have overcome most fears that were common in earlier childhood. But they often start having more anxiety from common stressful situations, such as school performance.
• They are curious about relationships between boys and girls. Few will admit to this interest-most will insist that they are horrified by the opposite sex.

That is quite an impressive list! Go typical nine year old's!

But it struck me as I read through this list several times that the least helpful and most misleading way I could describe Julia to someone who didn't already know her would be to start by saying she is nine years old. I would have to walk back and correct every single thing that person would be assuming about Julia based on their knowledge of a typical nine year old.

And this isn't new for us. This didn't just happen with turning 9.  Turning 8 was the same way - so was 7, 6, 5, 4, 3, 2 and 1. In fact, it was at Julia's six month check-up after answering "NO" to every single item on the developmental survey that I realized Julia 's path had already begun to diverge from her same age peers.  

I never did fill out another one of those surveys. If I was answering "no" at six months, what would I be answering at nine years?  "No x 10,000?" 

The older Julia gets the larger the divergence and therefore the less meaningful chronological age is to us. Honestly it means nothing. It is an outlier, it is irrelevant to understanding her, and I for one would vote for it to be thrown out.  

Let me be clear, I do not sit around thinking about this in my spare time. I do not care how Julia measures up to other nine year old kids. I do not care how she measures up to other two year old kids. I love her exactly the way she is -  so I don't like thinking about these age comparison issues because it forces me to measure her by what she isn't doing and that has never been our approach to parenting her.

 No, this isn't a topic I want to be thinking about. It only comes up when programs we have her participating in tell us something has to change because of her age. Just age. Nothing else. Period. That's when it becomes an issue I have to think about. That's when I suddenly have to look at my child and compare her to other 9 year old's. It's not a comparison I want to make. I want to talk about what she can do, what she is doing, where she is developing and thriving. Trust me,  I do not want to be spending my time building a case for why programs need to make an exception for Julia based on age.

But this is where we are. Again.

Every June, regardless of what else is going on with her - other people tell us her age is the thing that matters to them - and therefore a change must occur.  I get that for typically developing kids this might work - because chronological age accurately represents an entire data set of similarities these children share. But that's not the case for Julia - choosing to categorize her based on age not only seems irrelevant, it seems random, because none of her other data points match being nine. 

So if we are going to make a decision based on one singular data point (which is not how data is used effectively, but whatever...) - why not look at all of the data points we have to choose from for Julia? 

Here you go, here is 9 year old Julia in data points:

Size:

• Julia is the weight of an average six year old (thank you cannabis oil for that).
• Julia is the height of an average five year old.
• Julia has the head circumference of an average 14 month old.

At her most recent neuropsych evaluation,

• Julia's gross motor was that of an average 14 month old.
• Julia's fine motor was that of an 5 month old.
• Julia's receptive language was that of an average 9 month old.
• Julia's expressive language was that of an average 3 month old.
• Julia's overall cognitive level was that of an average 6 month old.
• Julia's broad independence level was that of an average 11 month old.

Diagnostically: 

• Julia has a chromosome abnormality.
• Julia has epilepsy.
• Julia is legally blind. 
• Julia has global developmental delays.

So where does Julia belong? 
I have no idea. Clearly these data points are all over the charts. 

But the one thing I DO know is that I would never pick just one of these data points on the list to make a decision about her. 

Determining where a child like Julia belongs requires thoughtfulness and consideration that goes far beyond all of the data points we have available to us, let alone just one. 

We have to consider what Julia CAN do beyond what a battery of tests says about her.  Where would she have the most likely chance of fitting in given her unique way of interacting? Where will she be safe? What is best for Julia?

No single data point can answer those questions  and honestly, no amount of data can capture who someone really is.

I have to confess this is one of the most frustrating things I have experienced as the mom to a child with special needs - this tethering to a data point that is meaningless to us. The structuring of programs around chronological age which is irrelevant in our world. I know that's how the typical world functions - but Julia isn't typical. These structures were created based on what typical kids are doing at a certain age - she isn't a typical kid. She isn't doing what they are doing and yet, that age category is what people running programs use to tell us where she belongs. 

Nothing makes me feel more misunderstood than this issue - especially when it happens with staff in a "special needs" program.

Right now in our home state of Colorado, there are programs Julia would greatly benefit from based on where she is developmentally, but she cannot attend these programs because she is too old.  When she was the "right" age for these programs she could not benefit from them because of where she was developmentally. How is this a helpful way to structure special needs programs?

 How is it helpful to set up programs for kids with special needs and then hold them to a categorization that doesn't take in to account their special needs?  How is it helpful to set up a program for kids with special needs and then tell their parents "We can't make exceptions for you?" Isn't the whole program an exception? Our whole life with Julia is an exception. Please show me one area in which exceptions aren't the norm for us. Isn't the purpose of a program for kids with special needs to help us with those exceptions? To think outside the box with us about what might be best for our child given how different she is from her same age peers? 

Instead of helping us think and work outside of the box, it often feels like more boxes are just piling up inside the original box.

And yet, my child is a freaking starburst. She doesn't fit inside a box.

She is fantastically complicated (that's not bragging, that the definition of a child with special needs). She requires flexibility and creativity and resources. If you don't want to give her those things fine, we will do it on our own - just don't claim to be a program that is meant for her then. You are essentially a typical program following typical rules, leaving us in the same place we would be in without you. 

And to anyone who might be formulating a response to me suggesting I am selling Julia short by pointing out how she isn't like a nine year old, let me stop you right there. I am the last person to sell Julia short - I am in awe of this child and what she can do. My singular focus as her mom is to give her the best life possible to continue to grow into the person God made her to be. Which means I have to be realistic about what she can and cannot do right now. 

What IS selling her short is making determinations about her based on one piece of data. 

It is selling her short to think she is so simple and unaware as to not be impacted by being placed with kids whom she has nothing in common with. It is selling her short to dismiss the benefits to her that can come from making exceptions for her. That, my friends, is selling her short. And it is selling us as her parents short as well.  We will not be talked out of doing what we feel is best for our child. ever.

Okay, I think I am done.

If you  made it to the end of this rant - thank you. If you are a fellow special needs parent who feels the same way I do, my heart goes out to you, you are not alone. If you are fellow special needs parent who doesn't feel the same way as I do, that is great! I'm happy this is one issue you aren't dealing with - our journeys definitely aren't all the same.  If you are a provider working with kids with special needs and you took the time to think about what I wrote, thank you so much! It means a lot to have my perspective as a parent considered (even if you don't agree with it) rather than dismissed or instantly argued with. 

Bottom line, in my experience with Julia, age is neither a helpful nor accurate way to categorize, segregate, or make decisions about her. 

I believe we can do more good for all kids IF we are willing to see them as more than data points.

Can We Talk About the Swing

A couple of weeks ago Jules and I drove to our favorite park.  We have to drive a little farther for this particular park, we pass closer parks on our way, but we go to this one because of the Swing. This park has an adaptive swing Julia loves, so the extra minutes to get there are more than worth it.

As we were parking on this particular visit, I noticed someone was in the Swing, which is somewhat rare. I was excited to see it was being used! We approached and saw a little girl maybe 4 years old in the Swing being pushed by her 19 or 20 year old nanny. The little girl was having a great time, laughing and smiling. And why not? The Swing is super fun - not just for kids with special needs, it's a fun swing for all kids!

When the nanny saw us walk up she instantly stopped pushing the girl and told her she needed to get off the Swing. The little girl was in tears.

"No, no, no," I said to the nanny. "She can keep swinging, we can wait our turn!"

The nanny looked hesitant, like maybe she should not accept my offer, but I reassured her we could wait, so she said to the little girl "You get two more minutes then we need to share."

At this point I am thrilled. This is what kids do on the playground right? They take turns. They share. They learn to wait. Such great stuff for Jules to experience!

Two minutes passed and the little girl finished her turn swinging. We thanked her for sharing with us then she ran off to play elsewhere. I put Jules in the swing and she proceeded to crack herself up each time I gave her a big push, her laugh echoing across the playground. And I felt like I was on cloud nine: Sunshine and swings and kids and sharing and laughter - all was right with the world.

After about 10 minutes I told Jules she needed to get out of the Swing and give other kids a chance to use it. There were no kids waiting for the Swing at that point but I felt like we should take a break just in case someone wanted to use it. That's a good mom move, right?

It took less than a minute for the original little girl to run back over to the now empty Swing and proclaim loudly that she wanted another turn.  I was smiling at her, thinking "Yes, of course, now it's your turn!" But this time her nanny told her no.  This swing was not for her, the nanny explained, she could do something else instead. The little girl protested, and silently I protested too, but the nanny picked her up and carried her away to another part of the park without further discussion. My heart sunk. I wanted the little girl to come back and swing on the Swing, the Swing she thought was so fun, the Swing that in my mind was not just for Jules but was also for her.

A few minutes later while Jules was still playing in the wood chips, another little girl ran to the Swing and started trying to climb in.  Her mom quickly walked over and sternly said "That one is not for you, it's for other kids, it is not a toy for you to play with."  And without looking at us the mom took hold of her daughter's hand and walked her to another part of the playground, leaving us alone with our Swing.

And my heart sunk a little deeper. I felt like shouting to the whole playground, "Friends, come back! Please, come back by us, play near us, share this fun Swing with us, and keep thinking of this whole place as being for all of us!" But I stayed quiet.

Jules took another spin in the swing. No one else came around while we were there. Then we packed up and drove home.  And my heart continued to hurt. For weeks it has continued to hurt. I felt sad and still feel sad. Sad that somehow in those tiny interactions a message was sent to those two little girls to stay away from my little girl - micro messages that are tough to spot and nearly impossible  to retract - but that over time become the ways of the world...

And here is the thing - I KNOW, I KNOW, I KNOW that both the nanny and the mom were totally trying to do what they thought was right regarding the Swing. I know they were thinking that because we were there they were supposed to let us have it. I know that. And I know their actions were coming from good intentions and I appreciate them trying to be so considerate - I really, really do. It just hit me that in their efforts to be considerate they were sending the wrong message about the person they were trying to be considerate of.  And those little girls heard that being considerate to Julia meant to move away from and separate from her. And that makes me sad.

I started to wonder, if kids are told the Swing is not for them but for others, what do they then think about the kids they see in the Swing?

If we tell kids the Swing is different and off limits are we accidentally telling them that the kids who use the Swing are different and off limits?

Every time we scoop our kids up and move them away from another person what are we telling them about that person?

I don't know.

I don't want this to come off as another, "Hey everyone out there, do this differently when you are around people with special needs." I know that gets old. I know most people are trying super hard to get it right, whatever right is. Honestly, I just saw this as an opportunity to think about our messaging to kids, because it struck me so clearly as I watched those interactions play out that what an adult meant to be a message about consideration could so easily be interpreted by a kid as a message about segregation.

So maybe if we can just try to watch this little thing, this little part of our communication, this subtle message to our kids that different is something to distance from rather than something to move towards, if we can shift from "them not you," to "all of us," maybe, just maybe we can change the ways of world.

Yes, one step towards each other at a time, we can change the world.