Thursday, January 9, 2014

What You Shouldn't Do For Parents With Special Needs Children

There are plenty of posts out there on how to help  (or at least not offend) families dealing with a medical crisis.

Can I give you some advice though? Sometimes, it seems people get hung up on their perception of what families need, instead of what they actually need. And if you're on the outside looking in (and that includes grandparents), you don't know the whole story, and it's never your story - it's about the child, not about you. It may be challenging for you as a friend or family member, but you'll never grasp the magnitude of how challenging it is for the parents, and the child's needs come before your wants or your comfort.

So let's talk about perceptions.

When you think about your friend or relative who now has a child with special needs, do you think, "oh, their house is always a wreck" or "that mom doesn't dress as nice as she used to or take care of herself the way she used to," or "they don't ever go out and they used to go out every week," or some other critique of how life has changed?

Sure, maybe they're depressed - it's very common in families with complicated kids. But, first and foremost, their priorities have changed. I know in our house, the bee-bee-beep beep beep of the pulse ox is going to come before anything else, even if it means burning dinner.

Don't assume you know what the problem is if you're not talking with them, asking how things are going, and being a part of their life.

Most parents in this situation find that of the many many people who say they will help when asked are never heard from again. Whether they don't know what to do, or are afraid, or embarrased....we never know, we just know that all our good friends no longer are interested in spending time with us. We get that our lives are complicated, that we have less time than we used to, that we often cancel unexpectedly....but that doesn't really seem like the sort of thing that should impact a friendship when we have a good reason for all of that.

Want to help them?

Don't ask what sort of book you should get them, or how to drag them to therapy.
Don't ask other parents what your loved one needs.
Don't think it's about you.

Here's the thing: If you want to help, do something, don't just stand there.

Show up.

Wash the dishes, clean the toilets, or whatever else you see that needs to be done.

Show up.

Ask about the medical things you need to learn to babysit. If they have other kids, take them to the park, or swimming, or whatever.

Show up.

Interact with their child with special needs - sure, you may suck at it in the beginning, but they're still a child.

Show up.

Bring dinner. Arrange to bring dinner to the hospital, or something that can go in the freezer at home for a day when time to cook goes poof. Call and say you're on your way and ask if you can pick up anything from the grocery store.

Show up.

Are you seeing a trend here?

Monday, December 16, 2013

It's Complicated

This weekend Leaf has been in the hospital. We originally figured she had a little cold that was setting off other issues, but our lovely little girl managed to show no virus activity from her swabs....not the first time she's done that and still been very sick, so whatever.

The thing is...this sort of experience always make me grieve for others, not so much for us.

We know Leaf will get better in a couple days. We're pretty sure we'll be able to get her trach out in the spring. She walks, she signs, even if she's not talking yet. She's still eating partly by tube, but making progress. Cognitively, she appears to be just fine.

Acorn too, improves each week. He can ride a bike (with training wheels) and write his name. He can do puzzles like a pro, which is new this month. School is going well, with a few bumps, and they believe he's quite smart, that he grasps phonics, that he might be reading some words.

But we have friends who are not blessed this way. Friends whose children will always have trachs and feeding tubes. Friends whose children will never walk or talk. Friends whose children will likely need life long care, for as long as their lives are. Friends whose children face "life limiting" conditions (the polite way of saying that they will die before their parents do). Friends whose children have been through more than twice as many surgeries as my two combined, and who still have many more to go.

It's all about perspective, and it's a complicated way of looking at the world.

Monday, December 9, 2013

When Accessibility is an Afterthought



Yesterday we went to a local Pagan event, held at a nearby city's community center.

The event was exactly as described - lots of cookies on tables, walk around and fill your box of cookies. The cookies have so far been very tasty, and the money raised is going towards funding a building for the local Pagan community, which will be quite welcome.

What was unexpected was the method of getting to the room that the organizers found themselves in:


Yes, that is our double stroller, exactly as long as the elevator is wide, and almost as wide as it was deep. There was not room for 2 adults in the elevator with the stroller - in fact, it was a challenge for me to push the button myself once we were wedged in there.

You know, I get that we're a little strange taking the kids so many places, and that the fact that my 5 year old is often in a stroller is a bit strange too (though if you'd ever chased him through a mall, or had him bolt in a parking lot, you'd totally get why he's there).

But I wonder how many people besides us have found this elevator challenging?

It was clearly put in sometime after the building was built.And I suppose it's better than nothing. But still....

Monday, November 25, 2013

Parents and VIllages and Pagans

Lots of thoughts this week about how Pagan groups accept (or don't) the children of their members, and how that plays out at festivals. We are not at a point in our house where attending events regularly is doable in any sense of the word. But even if it were, I suspect we'd avoid most groups and events for the foreseeable future because of the way that most groups handle children.

There are basically 3 ways Pagan groups and events handle children. (1) No children, (2) Children are allowed if they can follow an adult standard of behavior that parents are expected to police, (3) Your kids, your problem - you want to let them run loose, great, if not, you figure out how to keep them under control.  There are a very few places that offer some sort of childcare, and when they do, it's usually organized by a parent.

Festival wise, I have a hard time justifying spending several hundred dollars to attend a weekend festival where I'll be lucky to participate in more than 2-3 scheduled events. If my husband and I each take a shift with both children so the other one can have a child free shift, and then we each take a shift with each of the children to do something fun with them independently, that's 4 shifts, and by the time you add in meals and a super early bedtime for Acorn, and that's probably most of the day.

Additionally, it's not like my children are old enough for me to leave them in a tent asleep while my husband and I do something fun after dark, so evening things are basically out, unless we each take a night solo (and really....what's the fun in that?).

This even boils over into teaching - because if I use one of my slots of time with no children to teach, then I really have very limited time to enjoy the rest of the event.

Even with childcare...we're probably still in that sort of spot, though Acorn could probably manage childcare if they were prepared for him (though given the difficulties finding him a babysitter, I'm guessing that most places still wouldn't keep him). Some places assume a more laissez faire, free range sort of child policy, and my kids are just not safe that way at this point - I desperately wish that they were, but to practice free range parenting your child has to be able (and willing) to consider the best course of action, and Acorn is not there yet - and Leaf is too young to expect that.

For local ritual groups, the same situation would apply either I have to find someone to babysit, or I have to find a way to convince my children to be still and quiet at all times, and to only act appropriately....and let's just say we're not there yet.

I wish more Pagan groups would get on with realizing that parents can still be active members with the right support, and that children aren't an annoyance to put in the closet.

I strongly suggest that you read Don't Leave Your Friends Behind, which is a book about parenting and social justice movements if you're interested in other ideas for how we could do better for families. (that's an affiliate link, by the way).

Friday, November 15, 2013

Beyond Special Needs 101

I'm feeling, lately, like there are 2 types of special needs support groups out there - the ones that take all comers (or at least, all those with the appropriate condition) where the new folks ask the same questions over and over and over again - even if there's a FAQ or "start here" page - and the ones that are...more mature. The families who've been at it a while eventually congregate in other communities, where the lines between conditions are more fuzzy, and the focus is more on practical day in and day out things.

While those groups that those new families find first are useful...I feel lately like I'm putting far more into them than I'm getting out of them. There are so many things we have done...and the things that are new to us are generally not things that families who are new to this special needs life really are going to know about.

It's not likely that we'll ever be a completely typical family - some of the kids' needs are going to continue indefinitely. But I'm thinking it's time to take a break from many of the groups I've been a part of for the last few years. Maybe I'll go back sometime.

Friday, November 8, 2013

Thankful

I know a lot of people are posting something they're thankful for every day this month. I don't need to list a new thing every day, because every day I'm reminded of how lucky we are, and how thankful we should be, by two smiling faces (yes, even when they're sick, we can usually get a few smiles).

I'm thankful that my children are alive. Many go through less and are not so lucky. Many do not get to see their children grow up.

I'm thankful my children can walk. Many never do, or lose the ability to.

I'm thankful my children can eat. Even when I'm annoyed by the what and how....there are children who never develop the necessary skills to do so, and children for whom most or all foods are unsafe.

I'm thankful my children can make sounds. I'm not always thankful for the volume or pitch of those sounds, but we went so long without hearing either one's voice that I will never wish they should just shut up. Many parents I know tell me that some day I'll wish they stop talking, but I can't imagine that ever being possible. There are parents who will never hear their children's voices, and parents whose children have passed who will never hear their voices again.

I'm thankful that my children communicate at all. It has been a struggle, and we're all often frustrated, but there are others for whom communication is not so easy.

I'm thankful my children can breathe. Sometimes that's a little sketchy, but for something we all do continually, I've seen what happens when they don't breathe, and it makes me all the more aware of how lucky we are.

I'm thankful for diapers - though I'll be more thankful for potty training - their bodies work they way they should on this front, and that makes life much less complicated. Not everyone has that benefit.

I'm thankful for my children's health. I know they're not as healthy as some, and there will likely always be issues on that front, but things could be so much worse.

I'm thankful for a job that provides insurance that provides for their needs, even when I don't really feel like it meets my needs.

I'm thankful for a spouse who is involved in my children's care. I'm thankful for friends and family who accept my children as they are.

I'm thankful for loving and competent care givers - nurses, teachers, aides, and more - who make working and sleeping a little more possible.

But mostly, I'm thankful for smiles and hugs and tickle fights and bicycle rides. I'm thankful for morning snuggles and bedtime snuggles and singing and laughing.

Tuesday, October 8, 2013

Technology Speaks

Welcome to the October 2013 Carnival of Natural Parenting: Kids and Technology
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have written about their families' policies on screen time.

***


More than most families, technology is a central facet of our lives.

We have oxygen machines.

Machines that breathe when they can't.

Machines to suck out the mucous when a child can't blow their nose or cough it up.

Pumps to feed children through tubes in their bellies.

Machines to keep track of oxygen saturations and heart rate.


And we've agreed that we aren't about to let these things get in the way of our attachment to our children. We've worn them while carrying oxygen and feeding pumps. We've even occasionally (gasp!) Co-slept with a ventilator.

To be fair, we also watch a lot of videos - video helps with Acorn's comprehension, because he's so visually oriented and struggles with receptive language. They're part of our anti-anxiety routine for doctors visits and part of how we're learning sign language. More videos than I would ever have agreed to years ago. We're picky, though, in terms of what we watch.

But sometimes technology can bring us closer. The new gadget in our lives lets my son talk to us - to anyone.


While most parents rejoice in a child's first words, they still take them for granted. They expect words to come pouring out of their child, and eventually they start focusing on teaching them not to talk unless it's the right time or place. They learn to talk, and then to read and to write and to type, the flow of words moving faster and faster.

Communication is part of what makes us human. Communication binds us together. While sign language has served us well...Acorn's fine motor skills are not keeping up with his need to tell us what he's thinking.

To learn to use this device, we've spent a lot of time playing video games on tablets and phones - working those fine motor skills such as they are, finding their limits, and then trying to push further. Learning how to navigate tablets with their taps and swipes and different screens. Learning that touching different spots makes the device do different things....make noises, move, talk.

This isn't the sort of decision we make lightly, but we know Acorn has a lot to say, and it's nice to give him the opportunity to speak his mind.

And it doesn't hurt that there's less complaining at dinner when he can ask for exactly what he wants.

***
Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants (list will be updated throughout the day on October 8):
  • Has Technology Taken Away Childhood? — Jennifer at Hybrid Rasta Mama worries that technology is intruding on the basic premise of childhood - active play in all forms! Join her as she takes a brief look at how play has changed as technology becomes more integrated into the daily lives of our children.
  • Fostering a Healthy Relationship with Technology — Jenn at Adventures Down Under describes her children's love of screen time and how her family implements their philosophy and policies on technology.
  • Kids Chores for Tech PrivilegesCrunchy Con Mommy shares how tying chore completion to iPad privileges worked in her house to limit screen time and inspire voluntary room cleaning!
  • Screens — Without the benefit of her own experience, sustainablemum explains her family's use of technology in their home.
  • Screen Time - The Battle of Ideologies — Laura from Laura's Blog explains why she is a mom who prioritizes outdoor natural play for her kids but also lets them have ample screen time.
  • The Day My iPhone Died — Revolution Momma at Raising a Revolution questions the role technology plays in her life when she is devastated after losing her phone's picture collection from her daughter's first year.
  • Finding our Technological Balance — Meegs at A New Day talks about how she finds balance between wanting her daughter to enjoy all the amazing technology available to her, without it overwhelming the natural parenting she's striving for.
  • Raising kids who love TV — Lauren at Hobo Mama sometimes fears what children who love screentime will grow up to be … until she realizes they'll be just like her.
  • No Limits on Screen Time? Is that Natural? — Susan at Together Walking shares misconceptions and benefits of having no limits on technology and screen time in their home.
  • Screen Time — Jorje of Momma Jorje shares what is currently working (and what hasn't) regarding screen time in her household.
  • Positive Use of Technology with Kids — Deb Chitwood at Living Montessori Now tells about her family's experiences with early technology, shares helpful resources from around the blogosphere, and speculates on what she'd do as a parent with young children today.
  • why i will never quit you, TV — How Emma of Your Fonder Heart came to terms with the fact that screen time is happening, and what balance looks like between real and virtual life for both her toddler AND herself.
  • Technology Speaks — Janet at Our Little Acorn finds many uses for technology - including giving her child a voice.
  • 5 Ways to Extend Children's Screen Time into Creative Learning Opportunities — Looking for a way to balance screen time with other fun learning experiences? Dionna at Code Name: Mama shares 5 fun ways to take your child's love of favorite shows or video games and turn them into creative educational activities.
  • What parents can learn about technology from teachers — Douglas Blane at Friendly Encounters discusses how technology in schools enhances children's learning, and where to find out more.
  • 5 Tips for a Peaceful Home — Megan of the Boho Mama and author at Natural Parents Network shares her favorite 5 tips for creating a peaceful home environment.
  • Technology and Natural Learning — Kerry at City Kids Homeschooling writes about the importance of technology as a tool for natural, self-directed learning.
  • Babies and TechnologyJana Falls shares how her family has coped, changed their use of, relied on, and stopped using various forms of technology since their little man arrived on the scene
  • Kids and Technology — Rosemary at Rosmarinus Officinalis talks about the benefits of using technology with her preschooler, and includes a few of their favorite resources.
  • Using Technology to Your Advantage: Helping Children Find Balance — At Living Peacefully with Children, Mandy discusses how technology can be used or abused and gives a few tips to help children learn balance.
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