So, I’ve been on a podcast kick recently – I just am enjoy feeling either encouraged by others but also learning this social media world while I spend multiple hours in the car toting kids from here and there.  I was listening to a recent podcast on Risen Motherhood episode 147: How Can I help?: Loving the Friend who Has a child with special needs. It was good and it was right on.  I encourage anyone who knows a family or loves on a family with special needs to go listen to this. It was a round table conversation with 4 moms with children who have various special needs.  I think this conversation in our world especially that in the world of ministry is so important – so I thought I would tag on this in today’s blog.  Here we go.

So, if you are meeting our family for the first time, my name is Kaetlin.  I am married with 4 kids 6 and under.  My 3-year-old began our journey of down the special needs road.  Hattie was born with hypotonia although it was not noticed until 4months when we finally put 2 and 2 together and saw how delayed she was.  Life with Hattie is joyful but let’s be honest its hard.  Somedays its WAY harder than others.  Hattie cannot sit unassisted, cannot crawl, cannot walk but she can use a wheelchair like a bandit.  Her smile will light up a room but her “dog whistle cry” as we call it can break glass and draw A LOT of attention.  She’s very social but has only a handful of words.  We have some signs, but our life is a game of charades.  She has the label Global developmental delay.  Her diagnosis came in April of 2018 – GNB1 Syndrome. It’s a very newly researched and discovered genetic disorder – so there isn’t a bunch of information about what our life looks like in even a year.  

So, let’s talk about how you can help us – this is often a question I get a lot.  Do we think Hattie needs healing – no we believe she is a perfect gift from God, and she is who she is because He designed her that way.  Anything we do is to strengthen her – so pray for strength – in Hattie, In James and me, in her sisters who are learning to navigate questions and that the world is not always accessible. Love us, follow us and live life with us.

So back to the piggybacking on the podcast – Here are some takeaways I had from this special group of ladies.

1^st. Ask what will help the child be included in events

Navigating an event for our family is the “normal” parents worry x10.  For our particular case it’s the difficulty of mobility limitations and speech limitations on top of Hattie being SO AWARE of other children’s emotions/feelings.  We worry about Hattie feelings and her being unintentionally left out because she doesn’t speak, she gets overwhelmed easily, she has limited mobility in her chair.   Places that don’t have hard surfaces or have multiple steps levels makes life hard. For us its mobility for others its sensory overload or food allergies.  Be the host that asks how you can make this easier so [insert child’s name here] can be included.  Ask if they need to come early or come late.  Are their certain foods that you can avoid completely or usual foods their child eats and doesn’t have processing issues with that can be included?  Be the friend that doesn’t hesitate to ask – It will not be perceived as rude/nosy/pushy but instead will make us feel important and included.  Its intentional care that means the worlds to already stressed out and worried parents.

2^nd.  If we don’t come one time or maybe don’t show up after RSVPing, Ask again

Hattie has mostly good days, but she has some days that events are JUST NOT HAPPENING.  It puts us as parents in a hard spot because we are afraid if we don’t go, it might not happen again.  Also, my husband is SUPER SOCIAL, and loves to get out of the house – so he REALLY doesn’t want to miss but sometimes like I said Hattie’s needs become our family’s needs. If we aren’t there, there is a good reason – and it probably occurred last minute.  Sometimes it’s not Hattie but it is US – Shocker parents can be emotionally spent and drained too!  Sometimes emotionally navigating certain activities is just not a task we can bear.  Just don’t be afraid to ask again and again – invite again and again.  Be the friend that always is seeking friendship and community.

3^rd.  If your kid asks a blunt question, we understand their kids – don’t overreact  

Kids say things, they have no filter.  We all have had that awkward moment…in the bathroom…in the grocery store…. And it’s not always about someone else’s differences.  Laugh, be kind and ask them to say hello to the child.  Explain to them maybe after the interaction that sometimes people think/act differently from us and that’s ok! Our family understands this is not out of any malice. Kids are curious.  Parents are curious. We’ve accepted that there’s just going to be some awkward moments in this life.  Let it be awkward, remain calm and then take a positive step.  Point out a positive about their situation – For Hattie the lights being cool IS ALWAYS a go to -We did this on purpose.  We realize her chair is a barrier for some kids – so we designed it to be as eye catching and “cool” as possible.  It lights up like Hattie lights up!

Many kids ask Hattie, her sisters or me – “What happened to her?”  “Did she get hurt?” Seeing a kid her age in a wheelchair is unfamiliar to kids.  They assume she must have gotten hurt and they feel concerned for her.  I hear their concern and its ok families.  I don’t mind answering! It’s part of how Hattie is going to change the world. Be the friend that chooses kindness, peace and a smile.

4^th. Ask us how our child is doing but don’t make it ALL we ever talk about.

For a lot of us, we feel like Hattie’s progress is like watching plants grow – we don’t see much progress.  Instead of always asking “how is she doing” tell us something you’ve noticed she’s good at doing or is new to doing.  

Avoid negative convo starters or framing the question in a negative way like “do they ever think she will walk?” with your friends.  It places expectations on us that we already know that she is not meeting.  It’s a reminder that our child is different when every day we are living this truth out.  James and I are positive that the Lord made Hattie special – she is not broken, she does not need healing, she is Joy!  She is a constant reminder of God’s Love – she broke us out of our normal world and brought us into something better than we ever expected.  Is it hard? Well yes, I already mentioned that 80x times, but we wouldn’t choose any other life.  There may be other families that aren’t to that place or have a different view – that’s ok.  We are all unique members of Gods kingdom.  Be the friend that is intentional about asking but also talks about OTHER things.

5^th. Don’t try to relate by telling us about your friend’s sisters brothers’ child that has a child with special needs.  It makes it awkward and it isn’t really helpful.

Yes, many people have special needs, but it doesn’t help us have a common topic of conversation. I know nothing about that child – You may be trying to connect apples and oranges without even knowing it.  You may be triggering emotions in that family member that is not positive and might send them reeling for the next 5 hours.  Stay focused on our child.  Point out the positive things you see in our child and if you are uncomfortable with talking about our child – Talk about something else.  Anything else.  Don’t try to educate us either – even if you are attempting to discuss it in a loving manner, it will not be perceived that way.  We just want community.  You may not be able to relate to us about Hattie and that’s ok.  Let’s relate to one another in a different way – the body of Christ has hands AND feet.  Remember that.

6^th.  KEEP INVITING US to Church 

A startling statistic they discussed on this podcast was that around 30% of special needs families don’t feel supported by their local church.  This is a hard one to hear but I wasn’t surprised by this.  There’s a LOT of layers to the onion that is starting a special needs ministry and some churches just don’t have the resources to dedicate time to this.  So, what can you do – REACH OUT to those people.  We desperately need community and we NEED the word of God in our lives. Many families are often running on empty all day every day.  A smile and encouraging word for us goes a long way. 

We are incredibly blessed to have a church family that loves our Hattie.  She is VERY comfortable navigating our church but even sometimes she gets overwhelmed or has a meltdown and needs a minute in dads’ arm or locked in the car.  James and I experienced this when we visited a church while out of town and had a COMPLETELY different experience than we do at our home church.  Not that they did not do an awesome job at welcoming our special girl, but she was unfamiliar, uneasy, overwhelmed and did a LOT of “dog whistle screaming”.  James was SUPER anxious (Daddy worries about his little Hattie the most) – James was pacing…  He wasn’t sure if we should send her, but we did, and all was fine.

Sometimes we feel embarrassed.  We don’t want to disturb someone else.  We are always SUPER aware of things and people and as parents we just get nervous.  Sometimes we don’t know why she’s screaming – we are helpless and feel defeated – there really is nothing we can do.  I think other families can relate to this.  Be the friend that helps us by smiling not staring.  If Hattie doesn’t respond to you when you talk to her – its ok to back off, smile and talk to our family instead.  Hattie can be a little diva when she wants to, lol.  Be the friend that doesn’t negatively ask us why we haven’t been at church but just keeps encouraging and desiring for us to return. And hey if you are the pastor reading this – ask what you make it easier for families to attend each week.  Asking specific needs is really great and you could get a lot of great feedback.

And for all those families reading this who have a child or adult with special needs – Keep putting one foot in front of the other.  You are not alone in this fight.  God has big plans for your child even if it is so difficult to see.  You are loved.  You are strong.  We love you and would love to connect.  We have an email – [email protected] that you can connect with us.

Community is key to living this life.

Blessings, Kaet