Changed for Good

 I'm sure all special moms can say that we have been changed for the better because of our children. 

I can't help but think of Caleb during several parts of my favorite song from Wicked: 

It well may be 

That we will never meet again 
In this lifetime 

So let me say before we part 

So much of me 
Is made of what I learned from you 

You'll be with me 
Like a handprint on my heart 

 ...But because I knew you, 

I have been changed for good.

Your Calling as Guardian

I have a serious plea for all of you! 

Appreciate your calling as a mother. Appreciate that you are GOOD at it! Accept that it means you may not always be perfect at other things you might think you should do because you were meeting your ultimate call with such a full commitment. 

Didn't get the vacuuming done? Left the dishes in the sink over night? Didn't make it to the gym? In regard to any of those little things nagging you...Ask yourself this: Is THAT your calling? Is THAT your purpose? In comparison to caring for your child who requires a little more care, is it that important? Pretty sure the answer is a resounding NO. You have been called to be a special needs mama! It is a beautiful call and you are good at it! RESPECT yourself for meeting your calling. Allow yourself to be imperfect at the other "stuff" and recognize that it is all it is... just stuff. Please? For me? Thanks, guys!!! xoxo

Guardian Lyrics

Alanis Morisette

You, you who has smiled when you're in pain

You who has soldiered through the profane

They were distracted and shut down

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian

You, you in the chaos feigning sane

You who has pushed beyond what's humane

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian 

Now no more smiling mid crestfall

No more managing unmanageables

No more holding still in the hailstorm

Now enter your watchwoman

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian 

 

Tantrums v. Autism Meltdown

Autism is much more complicated than this comparison...I understand.  But it's simplicity could also be helpful for some.

Parenting Manifesto

 

It has been quiet around here, hasn't it? I'm sorry about that. It is not for lack of inspiration, ideas, or stories to share. I simply got out of the habit. But I feel a sense of rejuvenation. I believe in kidz. I believe in the relationships I have been seen others build as a result of kidz and other similar sites. Most importantly, I believe in our kidz and US - us special needs parents who live and breathe this life and sometimes feel discouraged and need to hear that someone else has felt that way or an idea or thought someone else has had that lifts you up, even if for a moment.

This 'Wholehearted Parenting Manifesto' by Brene Brown, PhD. is one of those ideas/thoughts for me that helped me see myself and my situation with a little more clarity for a moment. It wasn't written with special needs parenting in mind, but I do think it is applicable in every possible way. Read it and soak up the message.

 

I'm glad I went to Brene Brown's site for one other reason: I found this book of hers, The Gifts of Imperfection, on the sidebar. Read the subtitle: 'Let Go of Who You Think You're Supposed to Be and Embrace Who You are.'

I think that is beautiful. It is one of my favorite parts of the manifesto as well... HAVE self-compassion and embrace your imperfections so you can TEACH your children to do so. Isn't that SO important? For every child and every parent, YES. For a special needs parent to teach their special needs child? Perhaps just that much more important.

So, yeah, I bought  the book based solely on the subtitle.

And on that note, happy Monday, y'all! Make it a great week!!!

Friends, friendships

As a grandmother, I think a lot of my concerns about Hailey are valid...I worry about, who will take care of her when her parents are no longer here or able to, I worry about her being bullied because she is a perfect target for bullies, being non verbal and “different” than the rest of the kids, I worry about people taking advantage of her, I worry about how much she does or doesn’t eat, I worry about her quality of life being compromised and not being financially able to get her whatever it is that she needs, I worry about most of the things that every other parent/grandparent worries about, but am I being silly when I worry about her having and making friends that will be there for and with her through thick and thin? TRUE friendship is really hard to come by, and quite honestly if you have a few friends that you are really tight with, friends that have been with you for decades, then i think you should consider yourself blessed. I am very fortunate to have a couple of friends that I have known throughout the years, friends that I know that I can rely on no matter what, friends that I can call on and they too can call on me, and we would drop everything and anything for each other. I have a friend that I met in highschool and even though we are now miles apart (Chrissy) and don’t see each other as often as we should, when we get together it is as if we can still pick up where we left off. that is a friendship that everyone should have. I also have a unique friendship, my lifelong (and I mean all of my 46 years) friend Brenda. Brenda and I have seen each other through good times, and bad times, through births, weddings, funerals and sicknesses, we know each others deepest secrets, we know what’s wrong with each other, without having to say a word. This is a friendship that I do not take for granted, that I know that I am lucky to have. Take a secret inventory of your friends and see how many are this genuine. I am TRULY BLESSED to have Brenda in my life and I know it, I think we have a very rare kind of friendship. I thank God everyday that she is in my life! Hailey is only 5 years old, I’m sure she has plenty of time to make friends, but I worry. After all, how much time does she have to socialize, she has so many weekly therapies, countless medical appointments, feeding issues that make it much harder and longer for her to eat. etc. etc. Not to mention the lack of understanding of her disability that scares so many people away. Despite her beautiful and contagious smile, and charming personality, I think other parents are afraid to invite her over for a playdate Afraid that they won’t know how to take care of her. Keep in mind a play date doesn’t t always have to be a drop-off situation. A playdate can be two moms at the park with all of their children, or moms catching up and getting to know one another over tea while their children are playing together in another room. A play date can be as beneficial for a typically developing child as it is for a child who has a disability. It is imperative that children learn at a very young age that they are all equal despite the different challenges they face. I’ve said it before and I will say it again, “Hailey loves all the same things that another 5 year old child loves” She loves, to play, she just can’t run around, she loves to sing, you just can’t hear her voice, she loves to dance, she just needs a little help, she loves to blow bubbles, but she can’t blow, she can try effortlessly to catch them, and they inevidebly break, just like they break when any other 5 year old tries to catch them. One of her greatest needs is to be understood. If you can look past her disability and look right into her soul you would have a wonderful and fulfilling friendship! I saw this music wall on another blog I know Hailey would love it, I’m not sure that she can do it from this angle, she spends most of her time trolling around on the ground, (really got to get some knee pads to fit her) but maybe I can adjust it a bit, maybe hang all of this cool stuff on the back of a hollow door and bring it outside on the grass when she comes over to visit in the summer time, I think I will paint some of my utensils bright colors! I bet Brody will soon be able to play with it too. “To understand me is about taking the time to get to know me” copyright @-Janet Harrold

How Bad We Need Each Other

 

The very essence of this blog is wrapped up in these lyrics. Honestly, what would we do without each other!?

I have seen special needs mothers/parents come together for the simplest of things, like where to buy onesies or which sunglasses will actually stay on.... to the most complicated and heartbreaking moments, like facing a grim prognosis or holding hands at a child's funeral.

It is devastatingly beautiful how much we need each other

and that we actually have each other to count on.

How Bad We Need Each Other

by Marc Scibilia

 Life is too far to walk alone 

You can't do it on your own 

It's like bare hands digging through stone 

And if things go down much steeper hills 

Even money won't pay these bills 

And time will show 

That people gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

How bad we need each other 

And the trials of today 

They are signs along the way 

To remind us how bad we need each other 

How bad we need each other 

You know I can get so high on myself sometimes 

I keep on drifting a million miles from this planet 

But what a shame it would be to look back on this life 

And realize that I've taken you and you for granted 

That people gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

How bad we need each other 

And the trials of today 

They are signs along the way 

To remind us how bad we need each other 

How bad we need each other 

And I, I can't see what's a mile around the bend 

I do not know where this world is headed or where it may end 

But you gave me this smile 

So I threw away my frown 

And I ain't gonna pick up 

What I just put down 

That people gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

How bad we need each other 

People gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

Don't you know? 

How bad we need each other 

We oughta take a little time to sit 

Because the wisest men forget 

How bad we need each other 

Don't you know? 

How bad we need each other

A Different Kind of Perfect

 

I read this book a few months ago.  Of all the special needs books of read that follow this pattern, this is my favorite.

A collection of stories and experiences gathered by mothers and fathers, I felt that the book was overall uplifting.  The stories are organized thematically, like many books similar to this.  What was unique was a small introduction to each chapter written by a professional (I believe psychologist).  He introduces the topic and how it applies to parents of special needs children.

Another book getting a lot of attention and positive reviews: Optimistic Parenting.

Another great book resource:  Explaining special needs to your child: 15 great children’s books from The Friendship Circle Blog.

In Memorium

In memory of all those special children who have passed on, some words for those who love them....

When you have someone you love in heaven, you have a little bit of heaven in your home.

 Tears are words the heart can't express.

 

Goodbyes are not forever.

Goodbyes are not the end.

They simply mean I'll miss you

Until we meet again.

We will never be the same as we were before this loss, but are ever so much better for having had something so great to lose.

Do not regret growing older.

It is a privilege denied to many.

Brick by Brick

I just heard this song, Brick by Brick by Bess Rogers. It made me think of all the little, almost unnoticeable, changes that our daily efforts produce for our special kids! Of course, this is the case with all children (and all adults, for that matter), but when other kiddos are reaching and surpassing milestones, we cherish and celebrate the "inchstones"! And, oh boy is it worth it!!! 

Three steps forward and two steps back we go, 

You try and push harder, they push right back, I know, 

That time moves fast and change moves painfully slow. 

It's hard to see the shift when you're so close. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

You plant a seed and wait for it to grow. 

They hate it now but they're too scared to know, 

That their children's children will sit underneath it's shade, 

And their children's children will bask in the love you made. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

It won't show for the longest time,

Independent Living

 

I'm going through something that I know many of you have also faced: trying to get equipment covered through insurance. Ugh! I was expressing my frustrations to someone and was directed to the Utah Independent Living Center. I've only talked to them once and I feel like an incredible weight has been lifted from my shoulders! I explained which equipment pieces we are wanting for Chloe. They were eager to help me navigate the insurance appeal process and even offered some pieces of equipment to borrow until we get what we have requested from the insurance. And after I looked over their website, I realize they offer even more services.

Seriously, how have I not heard of this before!?!

I know what most of you are thinking. Well, great, but I don't live in Utah.

No worries, here are some great resources!!!....

Center for Independent Living : CIL provides services, support, and advocacy to enhance the rights and abilities of people with disabilities to actively participate in their communities and to live self-determined lives.

ILRU - Directory for Centers of Independent Living (just pick your state!)


NCIL - NCIL advances independent living and the rights of people with disabilities through consumer-driven advocacy. NCIL envisions a world in which people with disabilities are valued equally and participate fully.

Guaranteed to Make Your Day...

I'm different. I like it.

Kindness is a language that the deaf can hear and the blind can see. ~Mark Twain

Mothers...

believe, encourage, listen, sacrifice, teach, inspire, hug & kiss, always love

I love U & Me this much!

Waves

Grieving seems to come in waves. Sometimes we brace our selves and face it head on.

Other times we see it coming and try to run away.

Sometimes it gently laps at our feet letting us know it's still there.

And other times it washes over us completely.

We're learning to take it one wave at a time. 

Sometimes the ocean feels too deep and the waves too overwhelming.

However, it is usually after the biggest waves recede that treasures are revealed.

so we gather them up~

 

and tuck them in our hearts to help strengthen us for the next one. We know that even in those moments when we feel like we drowning, if we remember to look look up, the Savior will buoy us up. He will not leave us comfortless.

He reminds us those waves are filled with love.

The waves don't need to crush us, they can fill our hearts to overflowing-

Because when you love someone deeply you miss them deeply.

And that's not something to be afraid of.