Saturday, March 10, 2012

It's All Too Familiar Ground Really

This could be any little girls' bedroom really.
But it doesn't belong to just any girls.
It belongs to my girls.
To two gorgeous girls.
My oldest and my youngest girls.



They are both treasures.
Both very different.
In fact, Zippi has been noticeably different for a while.
Proabably since she was about 5 months old.
But as I voiced my worries and concerns many people said, "I think you are being too overly sensitive" or "she'll grow out of it. Wait and see".

So wait we did.
And now we see.

There is definitely something going on with Zippi.

Our precious almost 3 year old.
Something that reminds us of feelings and days of old.
Something not dissimilar to the road which we walked with Elijah around the time he was diagnosed with Autism almost 5 years ago.

I've said it before but I will say it again.
Lovingly of course.
But if me talking about Autism is offensive to you, then this is not the blog for you to be reading.

'Cause you see this little girl?

This little girl who is one minute wanting to be held tightly in our arms and then the next minute not wanting to be touched?



This little girl who went round and round the circle following the pattern on this mat I don't know how many times saying the colours over and over and over again to herself...


Do you see this girl who often wants to be away from the crowd?


...and off in her own little world, talking to herself, humming LOUDLY, or quoting MASSIVE chunks of dialogue verbatim from random movies?


See this gorgeous little girl who one minute needs the adrenalin hit...



...and the next needs solitude, rocking herself in the rocking chair or hiding in the dark?



This little girl who 'looks so good though' to so many people and yet who we see slowly slipping away? The little girls who is obsessed 'has a special interest' in all things art...


in 'Sulley' (<3)...



...and has gone from just having to have one or two or three or four dummies with her (all to be held in certain positions) to now having to have certain coloured dummies in her collection and having them sit on her bed in a certain way with the teats all facing the same direction?


Do you see this little girl who is so rigid in her play that almost nobody can join in now unless it is on her terms, regardless of how many times we try and explain things to her calmly...


Well, we are fighting right now for this little girl.
Daily.
I am fighting for her to get appointments to see what we can do to simply help her; speech, occupational therapy, naturopathy and other.
We are reaching out to her and wanting to touch her heart.
We are fighting in every way we know how because she is SO worth the fight!



She may not have autism.
We don't know for sure.
We've been told that it does look like she 'fits somewhere on the spectrum' by practicioners but we are still awaiting official diagnosis.
Any why is that important?
Because to us, it is like we are knocking on a door trying to open it and see if behind it lie tools and strategies to help us reach our sweet daughter.
The 'label' gives us the 'key' to help us open that door.
That's what it did with Liji.
And we believe it will be the same for Zip.


Some people reading this may think I have said too much.
Believe me, I haven't told you even the half of it.
But I say ALL this for one reason only....to raise awareness about WHAT life can be like with a child who has special needs...whether they be a sensitive child, a child on the spectrum with Autism or Aspergers or anxiety.
Please don't judge us as we journey this.
Life's already hard enough. 


Despite all I have written, lest you think my life be filled with doom and gloom, please let me reassure you that it isn't!
Sure we face lots of challenges, but who doesn't?
It is also DAILY filled with her cuddles, words and joyous laughter.
She can be such a fun, caring and sweet little girl to be around!

And the best thing we have? Is the knowledge that the One who created our gorgeous Zipster knows ALL the keys to understanding her and helping her understand us.
He also made her perfectly.
He promises us that NEVER will he abandon nor forsake us and we have seen Him prove Himself faithful time and time again.
I am so thankful for His love and grace especially during these darker days.

If you think to pray for us, that would be great.
In the meantime, if this 'desk is unmanned' then you'll know why.
I'm off fighting for my daughter.

More another time,
Lus x

25 comments:

Anonymous said...

Beautiful Zippi you are fearfully and wonderfully made. How amazing that Yah gave you a family that is perfect for you with a mama and papa who love you the way you are. You are a blessed girl. Thanks for sharing your life Lusi, we are prayibg for you all. Elisa

Lu Benson said...

Do you know what I see? I see a beautiful, spirited, individual, incomparable, determined, powerful and honest soul...Zip you are beautiful and wonderous, just as your father in heaven intended you to be, given to parents who would know and understand you for the things that the rest of the world may not, and filled with a spirit that truly belongs to only you. Shine on baby girl, trust in Yah, trust in your parents and family and friends who all love you so much, and trust that you will always be loved for exactly who and what you are. It's a long road, Lus, but you already know that, and Zip was not given to those who would not understand and not cherish her. You and Brett will be the reason she flourishes in this live with the gifts she is given. Do what you must to enable your flower to bloom :) Love to you all xx Lu and Doug

Heidi said...

Thank you so much for posting this, Lusi. I'm glad you have the courage to share. I am always encouraged to see you hanging on, being brave, trying to do your best. I am so grateful for YHVH's leading. As we face a new struggle, He gives us new information to face it with. His strength is made perfect in our weakness.

Much love, Heidi

Al Hannah said...

My heart goes out to you and Brett dearest Lusi ... I can feel the love in your post. I know this can't be easy, and you are so very brave. You are such a beautiful girl - and you are surrounded and supported by many who love, adore and cherish you.
I hope that you get the answers you need.
I couldn't imagine anyone judging you but I have not walked in your shoes - but I do walk closely behind, and I do understand.
Take care Lusi ... Al x

The Heaton Family said...

amen to all three of the previous comments. thanks for letting us in to your lives. May YHWH be glorified in ALL THINGS!

Victoria said...

What an inspiring and eye-opening post. You're so brave, thank you so much for posting this so the awareness of autism and all that it entails is more widely known. You have some amazing supporters in the blog world and we are all behind you 100%. Stay strong, we're all there for you.

Victoria x

kathy said...

I love how honest you are. Thank you. I'm sure its very helpful to other families. I think sometimes labels can be a good thing! I truly believe we as mothers know when something isn't right! Zippi is a gorgeous little girl and very lucky to be in your family!

Sarah said...

Oh so snap! We have all the speach and OT assessments with Sabi next week. Although Eli's OT has done a lot of work with her already which has really helped. She has been given the lable of Sensory Intergration Disorder/ central processing disorder, and probably not Autism but something's still a little off. That's a nice collection isn't it.

lusi said...

I've really been touched deeply your comments here today. Thank you each one of you for your kindness. It means alot to us. What I've shared in this post seems almost trivial...it's just the tip of the iceberg of what we are dealing with in her each day. We have 3 pages of observations of rigid behaviours and obsessions, of sensory processing issues, of social and language challenges. And we have a list a mile and half long of all her amazing qualities of course too ;-)
Thanks for your encoragement and to our family and friends irl for their support and prayers and chats too!
Love lus x

caz1975 said...

I have a special place in my heart for your little Zippi cause she shares my birthday and I hope you can get her all the help she needs to blossom. Having a child on the spectrum myself I can't imagine going through it all a second time but I see how much you rely on God as your rock and I know He will be faithful in providing all you need for each step of your journey. Much love to you Lusi xo

Anonymous said...

Dearest Lusi, thank you for sharing a small snippet of of what life is like right now. I pray you receive the answers you seek. Zippi has wonderful, supportive, loving and patient parents and lovng siblings. . You guys are an inspiration. I always feel a sense of calm when I read your blog, it has taken me on a journey of smiles, tears and joy. Hang in there guys, I pray that Yah will answer your prayers. Take care xxx

Amy said...

Thank you for continuously sharing your lives with us... I especially enjoy these kinds of postings because it's a real life view of what goes on in another's life and it brings a day to day perspective of what happens in the lives of those with Autism (and other stuff). Your blog could and possibly has already shown other families what there own families have.
When I look at Zip I see a Princess who was wonderfully made with a purpose not our own but His.
I have a friend who had add severely and many thought he'd amount to not a lot.. He's working for some hard core street kids and has enough energy within himself to run circles around the kids and most of the staff. Even in his life God is glorified through how special He made this man and he is influencing workers and street kids. I find encouragement in this because even though it was hard for his parents to raise him and others to be around him He is glorified and had a purpose with him... Same as He has with Zip and all your other kids.

Your amazing Lusi! Inspiring, encouraging and totally blessed by Him.
Xx

Andi said...

Lusi...I love these posts, and the photo's...but I love the heart in them, and the snaps of your life. A huge encouragement! Much LOVE!

singing mama said...

Lus, I'm so sorry you guys are walking this really difficult road once again! Zipporah is lucky to have you as her mama and to have you fight so hard for her. I wanted to encourage you that you are not alone on this journey and that we are here to walk with you thru the ups and downs. You know you can come to us at anytime, even if its just for us to be a sounding board! I also want to encourage you, that Yah is fighting for you even as you fight for Zippi!! Love and hugs Donna

Anonymous said...

Firstly I can't believe that Zippi is almost 3 years old, wow where has the time gone?

Secondly thanks for sharing some of your struggles. Life isn't easy at times is it!

It is wonderful to see you have lots of support.

Hoping and praying you get all the right answers to be able to help Zippi.

Have a great week, enjoy the good times and take care of yourself. From Susan McGuire (smiles1965) xxoo

Leah-in-the-Kia said...

oh Lusi, thankyou for sharing that lovely psot allowing us into a glimpse of what you are dealing with! I really wish you lived closer, even thought you are in a much bigger area than my town of 2500 people as where I work is an early intervention outreach service, we can provide access to the necessary therapists and are a one of a kind service west of the blue mountains. My boss who is the co ordinator of our service is amazing and would fight tooth and nail for you to get the necesary help ou need for little Zip! I know you would have great provisions in the professionals you need to see where you live, but i truly feel for you, it is so furstrating! anyway on a brighter note, I was in the city last night, I took my girls to the Taylor swift concert which was AMAZING, it was their birthday presents this year. We had a lovely time ( very tired 650 km drive home today)
Best wishes and hang in there,

Love to you all
Leah

MommySetFree said...

Lusi,
I appreciate these posts greatly! It is enlightening and beautifully done! I pray for you and your family, loving you from afar!!! This also helps me know HOW to pray for you. There is no more fierce fighter for a child than one's mother. May YHVH give you all you need (and more!)for the job you have been given and may ALL your children KNOW that you love them deeply and are there for them - no matter how ahrd it may be for some of them to express that at times. This is a shadow piture of YHVH's unconditional love for us and like wise - a mother's love is designed to be the same! Chazaq Chazaq Sweet Sister!

miss~nance said...

Lusi firstly lots of lovet o you and your family. It's been a while since I have commented on your blog though I read it every few weeks.

I am sorry to hear that you are again fighting for to get the right appointments for your precious one. She is such a gorgeous girl and I too can't believe she is 3.

My son works with 3 dissability agencies in Nowra and works one on one with a few autistic children. He is attending a Tony Attwood seminar in two weekends time (again in Nowra) to help him better understand autism and the way forward with his chappies. he has a real heart for his job and adores the children and young adults in his care.

I will be praying that the way forward for you all will be clear as you get answers to your questions.

Lots of love & prayers

Gail XX

Anonymous said...

Best wishes Lusi. You have a beautiful little princess and she is a part of a gorgeous family who will accept, love and nurture her into the best person she can be.
Best wishes with the diagnoses. I hope it will help unlock some of the mysteries.
Anthea

Nat said...

Honey, it was beautiful to 'get to know' your precious girl just that little bit more. Yah has fearfully and wonderfully made this little piece of goodness in Zipporah, she is made with a purpose and He will see that through in your family. As you know, life is never easy, and Yah doesn't always give us the things we think we want and need for ourself, BUT He gives us His strength to take each day as it comes, and to cherish each moment as it happens. I used to wonder how I would ever parent a child with special needs - and so far I haven't really needed to (apart from having one rather sensitive 11 yr old who displays many of the indicators of Aspergers from time to time), but one thing I have gained from actually having to say goodbye to a child, is that I would give anything to have had to deal with his special needs. And I know that God would have taken me through each day if He had given them to us.
Yah is so good, and He has precious zippi and your family in the palm of His mighty hand.
Love you all, and I so wish I had the chance to know your kids on a more personal level.
Nat xx

Anonymous said...

Lusi, you guys have been on my mind the last few days. Thinking of you all. Nadia xxx

Sarndra said...

Oh beautiful Lusi what a sad and touching post!! It's brought tears to my eyes. I'm thinking of you all so much and hope you get the appointments you need, very very soon! Your beautiful kids are SO blessed to have such wonderful loving parents. Much love to you all Xoxoxx

Traci said...

I must say that the thought that comes to mind is that this precious child has been blessed with a mamma and Papa who are in tune with her needs and have a heart to meet her needs and will seek Abba for her.

Many blessings to you Lusi as you all seek Abba's direction for Zipporah!

Donna said...

Hi Lusi, I have visited your blog for many years, starting when we were scrapbookers, then when my marriage was failing, then when my eldest niece was born & I knew in my heart she was on the Spectrum long before her diagnosis, all the time praying to the same God. I have admired your strength, commitment to your ideals, and pure love for your family. We are all flawed, but your children are blessed to have been bestowed to you by the Greatest One, He knows you are just the right parents for your children, ASD or not. He has lead you to "it" and He will lead you through "it"..."it" being any given challenge, joy, sorrow, experience. You have been given these unique children because you with God you have the strength, patience & love to handle the journey. You inspire me everyday, and even though I have never met you, I often find myself wondering "I wonder how the Austin's are doing"?!! May God continue to bless you abundantly with what you need, and may you always know that tapping into that overflowing well of love you have for your children & your husband, is all that you need to drawn on, because love motivates your mothering xoxo <3

lusi said...

I just wanted to say a special thank you to each and every one of you who left a comment on this post. While I didn't reply back to you all individually, please know how much each of your comments meant to me! I read each one and was filled with encouragement, hope and faith.
May Yah bless each one of you!
Love Lusi x

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