Faith, Love and Respect for ALL

Archive for November, 2012

sadness

Bath-time was a little longer tonight, with more play less cleaning. We sat on the kitchen floor eating fruit loops and playing. We cuddled in the recliner, eating more fruit loops and not combing hair, or any other business. Bed-time was later, at least for Anne, Beth requested bed at 6:45pm. I choked out our prayers this evening, and kissed her a little more. Then Anne & I danced, giggled, and screeched from the pure fun of not being in bed. After some more cuddle-time, I finally put Anne to bed too. Beth was all snuggled under her weighted blanket looking peaceful as ever, Anne fell asleep almost immediately. I sat there in the middle of their room watching them both sleep under the stars and moon projected everywhere in the room. I could have sat there all night just watching them, thanking God they are mine, healthy and here. Eventually I left, because my silent tears were becoming loud sobs, and I did not want to wake them up.

Tonight I weep for a child I never met, a little boy who I prayed fiercely for and loved, without ever actually touching him. Truth be told, I have only met his mother once in real life. Although we have only enjoyed one mom’s afternoon out together, I feel like she is one of my closest friends. We met online in a group for moms of kids with Sensory Processing Disorder last year when Beth first entered Early Intervention. A handful of us were fortunate enough to live within driving distance of each other, and able to meet for an afternoon of good food and great conversation. She has been one of my greatest inspirations, because the faith and love her family lives each day with is nothing short of miraculous. She has been one of my biggest supporters, and always knows how to help me find my hope and positive attitude. She has taught me how to simply thank God for all He has blessed us with, and to be patient as the road ahead of unfolds.

Tonight my heart breaks for my friend and her extraordinary family, because their 2yr old adopted son was called home to our Father in Heaven. After having 6 biological children, her and her husband decided that God still had a plan for them, they still had more greatness and love to bestow upon this world. They met and adopted a baby from the Ukraine, who had Larsen’s Syndrome. This beautiful angel spent the first year of his life alone in a babyhouse orphanage, but then was brought home to his forever family for the second year of his life. He was loved, cherished and a blessing to all who knew him. I have often marveled at his mother’s strength and braveness, but I know she gained it all through faith and love. Although I am filled with great sadness for his loss, I am comforted knowing that he will suffer no longer. I cannot even pretend to know what they are going through during this devastating time, but I am praying for them, and asking everyone to do the same. Rest in Peace sweet angel, may God comfort your loved ones as they face this earthly world without you.

A beautiful cover a friend close to the family created as a tribute:

A lovely poem, another shared:
I’ll Lend You A Child
by Edgar Guest

“I’ll lend you for a little time a child of mine,” He said.
For you to love – while he lives
And mourn for when he’s dead.

It may be six or seven years
Or twenty-two or three,
But will you, till I call him back,
Take care or him for Me?

He’ll bring his smiles to gladden you,
And should this stay be brief
You’ll have his lovely memories as solace for your grief.

I cannot promise he will stay,
Since all from earth return,
But there are lessons taught down there
I want this child to learn.

I’ve looked this world over
In search for teachers true,
And from the throngs that crowd
Life’s lanes, I have selected you.

Now will you give him all your love,
Nor count the labor vain,
Nor hate Me when I come to call to
Take him back again?”

I fancied that I heard then say,
“Dear Lord, Thy will be done,
For all the joy Thy child shall bring,

The risk of grief we’ll run.
We’ll shelter him with tenderness,
We’ll love him while we may,
And for the happiness we’ve known
Forever grateful stay.

But should the angels call for him
Much sooner than we’ve planned,
We’ll brave the bitter grief that come
And try to understand.”

If you would like to learn about this extraordinary family’s journey, this is his mother’s blog:  Bringing Henry Home

Here are two other blog entries dedicated to this sweet boy this evening:

http://wronginalltherightways-travcat.blogspot.com/2012/11/honoring-henry.html

http://covenantbuilders.blogspot.com/2012/11/one-of-our-own.html?spref=fb

**********************Addition as of 11/29/12*************************

I read these 2 blog posts this morning, and everyone NEEDS to read these, they are a beautiful testament to the love, hope and faith this remarkable family has blessed the world with:

http://littlecatholicbubble.blogspot.com/2012/11/rest-in-peace-sweet-henry.html

http://oh-three-ohana.blogspot.com/

********************Addition as of 11/30/12****************************

http://arthrogryposisadoption.blogspot.com/2012/11/a-history-of-sweet-henrys-adoption-in.html?spref=fb

 

 

 
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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

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Happy Thanksgiving

Happy Thanksgiving friends, I pray this day finds you surrounded by loved ones, and filled with joy. If you cannot be with loved ones, I pray that you are doing something that fills you with happiness and comfort on this day of thanks. We are enjoying a lazy morning at home, before heading over to my parents house to celebrate the holiday with our family. I hope everyone finds themselves with full bellies and happy hearts at the end of the day. I am praying Beth can handle all the love people have for her, with the sensory breaks we have planned. I am not sure how long our time will last with our family today, but I will cherish each moment, because I know how blessed we are to be able to see each other on the holidays. If it proves to be too much for her, then we will come home, help her regulate and go back to the drawing board, until we find the right compromise to make the holidays a wonderful experience and memory for our family. Today I am feeling Thankful and Blessed for all the miracles in our life, the biggest of which are our beautiful children and all the wonder they add to the world.

I leave you with a beautiful poem I found on poemsource.com:

I’m Thankful for You
Thanksgiving is the appointed time
for focusing on the good in our lives.
In each of our days,
we can find small blessings,
but too often we overlook them,
choosing instead to spend our time
paying attention to problems.
We give our energy
to those who cause us trouble
instead of those who bring peace.
Starting now,
let’s be on the lookout
for the bits of pleasure in each hour,
and appreciate the people who
bring love and light to everyone
who is blessed to know them.
You are one of those people.
On Thanksgiving,
I’m thankful for you.
Happy Thanksgiving!
By Joanna Fuchs

 

 

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Happy Holidays, Maybe…

We all know the Andy Williams song:
“It’s the most wonderful time of the year
With the kids jingle belling
And everyone telling you “Be of good cheer”
It’s the most wonderful time of the year
It’s the hap-happiest season of all
With those holiday greetings and gay happy meetings
When friends come to call
It’s the hap- happiest season of all”

The song paints a beautiful picture of holiday celebrations with loved ones, and all the joy they should hold. However, as I grow older, I can’t help but wonder, is it all just fairytale or perhaps an illusion? Personally, as a parent, the holidays are extremely stressful because there is always the desire to see and do it all, that must be balanced with what our children can actually tolerate. When you have a child with special needs, the holiday season becomes even more difficult to navigate, because of the chaos that comes with changed routines and sensory overload.

For most families, I think the song goes a little more like this:
“It’s the most stressful time of the year
With the kids crying and struggling,
And everyone telling them “Be a good kid”
It’s the most stressful time of the year
It’s the har-hardest season of all
With those holiday gatherings and loud crazy meetings
When people don’t understand at all
It’s the har-hardest season of all”

I used to love the holidays and look forward to the hustle and bustle, with all the gatherings and celebrations; honestly, the louder the party the more successful and fun it was for me. I waited with anticipation to visit with family and friends until the wee hours of the morning, just enjoying each other and the holiday. However now I have my children to think about, and my idea of the perfect holiday causes at least one of them distress and pain. If as their mother I am struggling to reach a compromise and grieve our old way of life, I can only imagine how hard it is for everyone else in our life.

We are blessed with so many people that love us and want to spend the holidays with us. Our family and friends look forward to seeing our children and enjoying all their craziness. Most of Beth’s sensory issues usually make for an au-some day of rough-housing, filled with delightful screams and giggles, with Anne right there alongside her big sister, ready for the fun. However, when there are too many of the people she loves in one place, and the noise level is much more than normal, her sensory system goes into overload and she becomes a confused, sad mess. If we work really hard, we can minimize the meltdowns and behaviors, and to most it appears she is simply being a bratty child. I suppose we concentrate so hard on keeping her regulated that most people have no idea how bad these excitable, loud gatherings truly affect Beth. Although, sometimes I wish they could see the real picture, I also cannot let her suffer in an effort to educate people. Thankfully, there are brave, wonderful people who have already showed the world what it is like, and I can share their wisdom and examples.

I have found 3 amazing clips, created by people with ASD or SPD, on YouTube that simulate sensory overload. Every person who loves an autistic child, a child with Sensory Processing Disorder, or other special needs that affect the nervous system NEED to watch these, and read their descriptions:

 The Autism Experience

Sensory Overload Simulation

 Aspie Blog – Sensory Overload Through My Eyes

Please remember the basic meaning of the holiday season is to enjoy our loved ones and celebrate the blessings in our life. We all must compromise during the holidays to create a loving gathering filled with happiness and joy. For us the most important part of any celebration is our children, for they are our greatest blessings. Perhaps the adults will not get everything they feel they want in the beginning. However, if the children are happy, their joy will fill the house with such wonder, perhaps everyone will be surprised at how the different (not less) approach brought about a new tradition that left everyone filled with hope, love and joy.  I pray you all find you own, unique way of celebrating this holiday season, which will fill your children and families with beautiful, lasting memories.

If you are struggling, as we are, to create a sensory friendly holiday season for your family, please read these two fabulous blog posts. Although I am still not sure what our plan is, these extraordinary people helped me see things in a more positive and hopeful light.

Sensory Friendly Christmas by Lost and Tired

A Secret to Help Your ASD Child Minimize Meltdowns During the Holidays by Connie at Parent Coaching for Autism

 

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

DIY Weighted Blanket

In October I attended an annual retreat for moms of children with special needs. This was my second year attending, and I always come home with some great ideas, tips and strategies for our Au-Some life. This year one of the most amazing things I learned was how to make a weighted blanket using duct tape, ziploc bags and rice (or filling of your choice). Many special needs children can benefit from weighted blankets or lap pads, but they are just so expensive, and often not affordable for families. The ladies printed out directions for us, and made a small demo with six bags of rice, about the size of a lap pad. I then made a slightly larger one for Beth with nine bags of rice. She does not like the duct tape feel, but really likes her new “blanket” when it is in a pillow case, and it was invaluable when she was sick, because we could just wipe it off and put a new pillow case on it.

I wanted to share this with the world; because it can be an inexpensive way to give your kids some much needed sensory input. Plus, if they are able to, it could be a great project for you to do together; it takes about an hour from start to finish. I hope you have as much fun as I did making mine.

A few words of advice from a friend, which should be noted:

1. The proper weight should be 10% of body weight, plus 1lb (i.e. ideally a 40lb child should have approximately a 5lb weighted blanket).

2. Oral children may chew on the blanket/pad, which could be dangerous for the child, so you must decide if this is a good option for your child.

Other helpful hints:

1. One woman who needed a heavier blanket put metal washers (from the hardware store) in her bags of rice; while another friend combined rice and beans. The possibilities are endless, but I prefer the rice.

2. Some ladies wanted strictly lap pads, so they only did one row, but had 4 spaced across.

3. If you are using rice or beans, you can ask your local food pantries for their expired dry goods, and save a few bucks. It doesn’t make if it is expired because it will be sealed inside the bags and tape.

4. Many of the women have made covers for theirs out of favorite fabrics, but since I am not good at sewing, we simply use a pillow case. You can customize this so many ways for your child; it could really be a fun project with great results.

My cost to make the following “blanket” was as follows:

$2.48 for generic ziploc bags

$2.98 for 5lb bag of rice

$6.74 for 2 rolls of 20yd plain duct tape (you can get 10yds of patterns or popular characters for $3.37 to $5.97)

Total cost of (approximately 6lb, 25″ x 15″) weighted “blanket” $12.20

Step 1: Gather your supplies (I chose to use rice, duct tape, ziploc bags)

Step 2: Measure out your filling (I used 1.25cups of rice in each bag for a total of 5lbs)

Step 3: Lay everything out to make construction easier (I decided to use 9 bags for a 3×3 formation)

Step 4: fold over top of ziploc bag, press down on top strip of tape (you want it centered top-bottom), then space bags across to create the first row (you can put them as close of as far apart as you chose).

 Step 5: Affix the bottom of the bags to the next strip of tape (you want it on the top half of the strip, because the top of the next row will go on the bottom)

 Step 6: Repeat Steps 4 & 5 until you have the desired number of rows (I did 3 rows), then place a final strip of tape along the bottom of the last row

 Step 7: Cover the rows of duct tape to seal the “seams.”

 Step 8: Finish the Border with vertical strips

 Step 9: Use long strips of tape to cover the bags (I used horizontal strips, but you can also use vertical)

 Step 10: Flip blanket over

 Step 11: Repeat Step 9, until completely covered (you may have to fill in any holes with smaller pieces of tape)

Step 12: Fold tape over each side to seal and smooth out the edges, and your weighted blanket or lap pad is done. (I lay the strip of tape down then position the edge in the middle and just fold over)

PDF of original instructions: Weighted Blanket 2

Word document of my step-by-step instructions for easy printing: diy weighted blanket

 

 

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

The Difference a Year Makes

Today is ONE year since we received Beth’s diagnosis. It was November 1, 2011 when the developmental pediatrician handed us the big packet, and there it was: “Autistic Disorder” in black and white. I asked as many questions as I could think of, we took our packet and left to go meet Marie for lunch. I remember eating lunch at the Daley Center and handing Marie the packet through teary-eyes. I was trying to be brave, but it was sinking in, and I cried the rest of the day. We were prepared and we knew the diagnosis was coming, but seeing it on paper, and reading their observations and assessments of 11-18months across the board for my 34month old was too much. I felt as though I had been kicked in the chest and simply could not catch my breath. Fortunately I was able to pull myself together before we picked up the girls, and the rest of the tears that came were shed strictly in the shower, or in my pillow where no one could see or hear. I did not know what our plan was, but there was one thing I knew for sure, I would NOT let our girl think there was something wrong with her. We would make “Autistic Disorder” seem like the greatest thing since sliced bread, because she needed to know what a blessing she was, how proud we were of her,  and how much we loved her. Thus Our path changed and Our journey began to wind through the miraculous Special Needs world.

Fast-forward to a year later and life is a rollercoaster ride filled with storms, all shades of the rainbow and lots of Au-Someness. Beth has progressed so much in the past year; all I can do is marvel at her and her amazing mind, body & soul. Her private Speech-Language Therapist and Occupational Therapist who have been with her since we started in Early Intervention in July 2011 also cannot believe her level of achievement in the past year. Her expressive and communicative language has blossomed beyond hope in this short time. Her SLT actually said she would put her around 27months overall, perhaps even higher in some areas. That is HUGE, in a year’s time she went from an 11month old to a 27month old in Speech. She is learning to recognize her sensory needs and finding ways to fulfill them on her own. She is not only tolerating Anne, but actually playing with her, and showing concern for her. I am finally seeing the sisterly bond that I prayed for every night, when Beth could not even stand to have Anne in the same room as her. She is initiating and engaging in imaginative play, which is so wonderful to see, sometimes all I can do is smile to avoid sobbing in joy. I suppose I could go on forever, because I see so much progress, but the last thing I will say is that she is also excelling at school. She has FRIENDS there, and she talks about them at home. Her teachers tell me how well she is doing in learning, playing, sharing, and just being a 3year old girl. My heart could burst from the pride, joy and thankfulness I have in Beth, and all the extraordinary people who are assisting her in navigating this world, while letting her be herself.

Life is not always sunshine and rainbows, and we have some really rough days, but we take the good with the bad. There are days that I am angry, frustrated, sad, and pretty much feel like the sky is falling. Then I pray, talk to Marie, or simply cuddle/play with my girls and truly listen to them (words, actions, their entire being) and realize if we did not have the hard times, we would never truly appreciate the Au-some times. Our family has made sacrifices, we have changed, and we have grown. Sometimes we make the right choices, and sometimes we make the wrong ones; although I believe everything happens for a reason, so I am not sure “wrong” is the right term. Perhaps it is better to say that most times we take the direct route to the next path in our journey, but frequently we also take the very long scenic route. We are far from perfect, but we are making progress, while enjoying everything life has to offer and that is all that matters. Our family is Autism Proud and today we celebrate our 1year anniversary of being Different Not Less!

 

 

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

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