You Know You’re a Special Needs Mom When..

• your drive back from the daycare/preschool/school/doctor involves you telling yourself out loud, “Don’t cry, don’t cry, don’t cry, you already cried this morning, you’re done for the day”
• you know what I mean when I say I told them she wasn’t potty trained and I got “the look”
• you’re completely exhausted and have no idea how you will survive the day or the rest of the summer, and it’s only 9AM
• you refuse to even look at the yawning chasm of despair before you, because you know that way lies disaster
• your capacity for hope is bigger than anyone else’s, that you know of
• you still need to wear baby-proof clothes at home even though your kids haven’t been babies in a while
• your gray hairs are now coming in exponentially
• you actually have a “staff” even though you don’t make a lot of money
• you told your child a story and he/she listened ALL the way through, for 2 whole minutes, and laughed and you felt like a hero
• your child knows a prayer by heart and you beam with pride
• 2, 3, and 4 word sentences are the sweetest things you’ve ever heard
• you can’t stop laughing as you recognize 3 words from your child singing “Twinkle, Twinkle” at the top of her lungs in the shower

And so. It’s been a roller coaster summer, and we have what? 6, 7 weeks to go?  I have no good solutions for Zoe for child care for the fall yet.  I have zip zero nada idea what Amelia’s school is doing about a special needs staff for Special Needs staff at present, or if they’ve even hired enough replacement staff.  Two maybe projects I was excited about fell though, no callbacks on jobs right now, and I’m still hanging in there.  My time of Selah is not over yet…not sure if it will last the whole summer or not.

Right now, I’m just psyched it’s Friday and date night, AND I get a few hours off tomorrow while Chris takes the kids swimming.  Never been so happy to get my period!!

What about you?  Gnarly week?  Doing the hallelujah chorus for the weekend?  Cool plans? Share.

Book Review: Autism & Alleiuas

A few weeks ago, I was sent a book called Autism & Alleluias by Kathleen Deyer Bolduc.  This awesome little book is more than a devotional.  Ms. Bolduc relates her struggles and triumphs in raising her son, who has autism and finds answers in faith.  She not only shares life stories, she also writes beautiful poetry as well.

But I’d like to tell you how this book encouraged me.

I had a great weekend this Easter.  I’m experiencing an  uncharacteristically “great” time in my life right now, and this holiday was no exception.  It’s been a while since I even celebrated Easter with anyone but my kids, husband and mother-in-law, but a new church, an egg hunt, and spectacular weather put the icing on the proverbial cake. I went to bed even pleased with the girls’ behavior and lay down to read.

All of a sudden, I was struck with despair.  You see, having 2 special needs kids has lately and infrequently made it really difficult to be around typically developing kids.  I love those kids who belong to friends and family, and I’m grateful that they are healthy and whole, but it sometimes feels like my family’s struggles have been underscored in yellow highlighter when I’m with them.

Yes, I’m fully aware how petty that is of me and no, I wouldn’t change my kids for all the world, but I want to be honest about the suckitude I sometimes feel.  And, of course, when things are great, especially in the spiritual realm, darkness tries to pull the wool over your delighted eyes.  So I sat in bed, crying after a near-perfect weekend, and hating myself for it.

Then I remembered this book and thought maybe I could find some consolation. It being Easter, I read the chapter named “Resurrection”.  In it, Ms. Bolduc encounters a man who comes from the Lakota Sioux culture, where they consider special needs people and children as “gifts from God” to teach the rest of us compassion. They are all treated with respect in that culture.

That gave me hope and inspiration.  Don’t you ever get the feeling that as “advanced” as we are in this Western culture, sometimes we can be so backwards?  I have never felt so passionate about something as the rights and respect of kids with special needs… and let me tell ya, in case you haven’t noticed, I’m a pretty darn passionate person.

My recommendation? Run right out and buy Autism & Alleluias.  Support the author by reading her blog.  Or meet her on the phone tomorrow at this free webinar tomorrow (Thursday, 4/8/10) at 2:00, featuring Kathy Bolduc, Ginny Thornburgh, and Bill Gaventa, titled “A Place Called Acceptance.”  Here’s a link to registration: https://www1.gotomeeting.com/register/400446400

Sadly, I have a commitment at that time and cannot go or else I’d meet you there!

Thank you, Kathy, for writing such an inspiring book and for sharing your journey with the rest of us!

Giveaway and Review: “Not Just Spirited”

We have a winner: Sarah!  Congratulations!  Your copy will be sent via USPS as soon as I get your information!

Thank you to all the contestants.

“Not Just Spirited: A Mom’s Sensational Journey With Sensory Processing Disorder (SPD)” is the book by Chynna T. Laird, who just guest blogged for me last week.  It chronicles her struggles to raise a child with Sensory Processing Disorder (SPD), many of which I dealt with myself.

What I like about the book is its honesty.  Ms. Laird does not hold back from telling the reader her feelings in dealing with the various care providers, care centers, and schools she has enrolled Jaime in.  It’s spot on in relaying all the difficulty a parent has when trying to get just the right services to help their child become a healthy, functioning member of society, and how much frustration you experience when your child’s needs are not understood. It’s also a quick and easy read.  I highly recommend this book for parents newly dealing with SPD, but also for parents without special needs children, who want to gain insight on what the life of a special needs parent is like.

The Giveaway – How to Enter
This week, I am giving away one copy of  “Not Just Spirited”.  To enter, simply comment below why you are interested in this book. Feel free to to leave your story as well.  Be sure to leave your email so I can contact you if you win.

Additional Entries:
For one additional entry, you may retweet this contest.  Be sure to return here and comment with your tweet link!

Contest End Date:
I will run this contest from now through midnight, January 25th, so be sure to enter soon.

I’d like to thank Ms. Laird and her team for sharing this wonderful book.  Keep an eye out for her new book releases, coming soon.

Five Things No One Ever Told You About…SPD by Chynna T. Laird

When my daughter, Jaimie, was given a diagnosis of Sensory Processing Disorder (SPD) five years ago, it was both a relief as well as a frustration to hear. We were relieved because we’d gone through two years of knocking on doors, endlessly researching her symptoms, asking questions to the experts, recording every behavior and reaction just to get the answers we needed. After watching our child suffer with something we neither understood nor could help her with, it was an incredible relief to finally understand what we were dealing with. The frustration, however, was that even though we had the diagnosis, we weren’t able to get Jaimie into the right treatment program right away because she didn’t fit neatly into any of the categories that would have given her the “code” she needed for program qualification or coverage for any treatment program. This led to even more research, interviewing and door-knocking but we finally got on the right path.

The number one thing parents need to do is arm themselves with information—not just about SPD but also how to get their child the specified help she needs. Here are five things no one told us about SPD but that other parents can take with them on their own journey:

(1) There are seven sensory systems. The number one thing parents must understand about SPD is that there are seven sensory systems. We’re taught from Elementary school that there are five sensory systems. We learn all about the senses of sight, hearing, taste, smell and touch. But there are actually two more systems that aren’t discussed. Here’s a short breakdown of all the systems:

• Auditory: This is our sense of hearing. It involves not just what we hear but how we hear and how we interpret sounds. (This sense is closely related to the vestibular system.)
• Olfactory: This is our sense of smell. It’s actually the only sense that doesn’t need to make pitstop at a specific processing area in the brain before telling the body how to react. The sense of smell can be a powerfully emotional experience because we often connect certain scents with memories. It affects what we’ll eat, what we’ll play with, who we’ll get close to or even play with.
• Visual. This is the sense of sight. This involves everything we see but also how our brains interpret what we see. Because the eyes use muscles to adjust to light (which lets us focus on objects), it’s closely related to the vestibular and proprioceptive systems.
• Gustatory: This is the sense of taste. It’s closely related to smell (think of when you have a cold and can’t taste anything.) Taste is important because it not only helps us have a good relationship with food but it helps keep toxic things out of our bodies (eg: When things taste bad, you spit it out.)
• Tactile: This is the sense of touch. The skin is the largest organ on the body. This system helps us learn how to interact with the people and objects in our environments. It also helps keep us safe by understanding when things are hot, cold, soft, hard, painful or feel good. It makes us feel safe touching and being touched.
• Vestibular: This is the sense that is closely connected to the cochlear system in the inner ear. It helps us feel balanced, coordinated, grounded and help us with maintaining proper head motion (Helping with vision and hearing).
• Proprioceptive: This sense sends messages back and forth between the brain and the muscles and joints. This system not only tells our bodies how to move but if we’re moving, and how fast. And because it involves all the muscles in the body, it can affect speech and eating (tongue, jaw and mouth muscles), writing and hand grip (fine motor skills) and muscle tone (gross motor skills).

See? There are seven. We always knew there were other problems with Jaimie but until we got her into SPD therapy, we didn’t know the names of the other two systems. Parents need to learn about, understand and inform about the vestibular and proprioceptive systems. Often, a child’s body desperately needs input for these systems too but isn’t getting it—or the right kind of input—because people don’t know about them. Get the word out!

(2) Coverage for treatment isn’t always there. This is a real frustration for parents who can’t afford the, often, rather expensive SPD treatment their child needs. You see, many people in the medical profession don’t see SPD as a separate disorder. It’s often felt that it’s part of other neurological disorders such as Autism, Asperger’s, ADHD and others and, therefore, will be treated along with the main diagnosis. However, SPD is a separate disorder with its own symptoms, treatment methods and diagnosis. I usually invite people to visit the phenomenal continued research conducted through the SPD Foundation to reassure any questions or doubts they may have.

(3) SPD can be treated. Some children will live with SPD all of their lives while some with milder forms of SPD “out grow” their sensitivities. But all of these children learn to ‘reconnect’ their brains to process sensory information effectively through specific treatment with a trained occupational therapist (OT). OTs expose children to sensory stimulation through play and fun activities so they learn how to tolerate and cope with the stimulation. Knowing that SPD can be treated offers parents hope for their child’s future—an assurance that their child will still be able to live a productive and happy life.

(4) It’s a long road. One thing that we didn’t realize was that treatment can be a long road with many bumps to endure. We knew the areas Jaimie needed help with but finding the exact things that her body craved was the challenge. Parents need to remember that their sensational child’s needs will change from one day to the next and so will the tools, exercises and activities that their body’s need to calm down or get going. It can be frustrating, believe me I know. But parents should be patient and work with the OT, try different treatment methods out there, have options to offer their child and go with the flow. Eventually, the child will be able to tell his parent what his body needs or simply go to the exercises and tools he needs on his own.

(5) Advocating is more than telling what’s ‘wrong’. Once parents understand what SPD is, how it affects their child and what their child’s exact needs are, they need to be able to go out there and advocate for their child in the community. When they are younger, children with SPD depend on their parents to inform others about their disorder so they get what they need to function effectively. What I often forgot about in the beginning was that advocating for Jaimie meant that I need to not only tell people what Jaimie’s struggles were but I also needed to tell people what her strengths were. We don’t want people to see our child with an SPD label stamped on their foreheads. These children excel in areas too and we need to have those out in the spotlight as well. Advocacy is fighting for our child’s welfare and rights, that’s true; but it’s also about raising awareness through giving information, discussion and getting people talking. Getting people to see the child as a whole is what advocacy is all about. Besides, we need to be teaching our child how to advocate for himself one day so what he sees us doing for him today encourages him to take on himself tomorrow.

The only other thing I can bring into the spotlight is that siblings are often very affected by what their sister or brother is going through. They don’t understand the outbursts or what they may have done to trigger them or why their sister needs all the special toys or tools or why they have to have so much extra attention. We try including our other children in all that we need to do for Jaimie because, ultimately, they need to understand too. They may have to explain why Jaimie reacts the way she does sometimes or be asked why their sister needs headphones and sunglasses when she goes out or why Mama is pressing or massaging her muscles and joints. Giving siblings the power of information makes them feel like a part of everything and, in their own way, they can help.

And that’s an amazing gift.

Anissa Mayhew’s video for parents who don’t have special needs kids

Anissa sums it up very well here. If you don’t know Anissa Mayhew, she needs your prayers. She’s an amazing and dynamic blogger who had a serious stroke back in November. Her recovery is coming along slowly and she needs your prayers!  As a former stroke victim, I can attest to how well they work too. Read about her recovery here and help out, where you can, at least with prayer and random acts of kindness!  Now watch:

Happy Thanksgiving from Mom-Blog!

Hi everyone, just checking in to wish you a Happy Thanksgiving!

I’m feeling so good about this year and I spent my blessedly late morning in bed list giving thanks to God for a long list and praying for a few in need.

One of the things I realized this year is how much I have.  Even when Chris lost his job, and I later got 2 paycuts, it still was incredibly better than most people have it.  Did you know that if you have one house and 2 jobs you are richer than 95% of the planet?

I finally got that message this year and learned to be grateful for my house rather than grumbling (although I do slip from time to time).  My property and home in a third world country would house more than 100 people, and I know it.

Recently, I posted about Reece’s Rainbow, an organization that touches my heart because it tries to help children with Down sydrome who have no families to get adopted.

Can you imagine, having no family when you need heart surgery?  No family to provide you early intervention that could literally change your life for the better?  No family to hold you and comfort you when things suck?

I can’t.

So if you are grateful for that roof over your head, that computer you now have access to, the food in your belly, and anything else you have that others don’t – even if it’s substantially less than what you had in the past, please check out my friend CJ’s site.

CJ has a heart bigger than anyone I know, really.  She loves children with Down syndrome so much that adopting a child of her own was not enough.  She is trying to raise funds for Melissa, and to quote CJ,

“Melissa is the T21 Traveling Afghan Angel and it’s our job to help her get adopted. Yes, that means you.”

There are many ways to help: donation funds OR items,sponsors, spreading the word, prayer, or of course, considering adoption.

And IF you are near Appleton, WI, please try to attend her fundraiser:

When: December 16, 2009 6pm to 8pm

Where: Harmony Cafe:
233 E. College Avenue
Appleton, Wisconsin 54911
That’s it. I’m grateful for my family, my home, for the world we live in that a special needs child does not have to be locked away for life, and that you and me can do that for special kids around the world. I’m thankful for my friends, my home, my work.  I’m thankful for CJ, who inspires me to DO MORE.

And I’m so very thankful for you, dear readers!  Mom Blog maybe would not be here anymore if it were not for you, but I love you all and I’m so honored you are here!

love, peace & happy thanksgiving, even if you don’t celebrate!

g

Raising a Child with Down Syndrome

Yesterday I read “Down Syndrome Births Are Down in U.S.” at ABC News, which talks about the effects of the statistic that 80% of pregnant women who take the amnio and discover that their fetus has Down syndrome choose to terminate the pregnancy. The result is a huge decrease in births of babies with Down syndrome, which in turn, will affect funding for research on this syndrome and, perhaps, eventually affect laws.

There were a few things I was shocked by in reading this:

• Fear. People are actually afraid of having a baby with Down syndrome.  The mother in the article literally preferred her child have a heart defect rather than Down syndrome.  This makes me so sad!  I can tell you this: “fear” is tied to not understanding Down syndrome and not knowing people who have an extra chromosone, in addition to going by outmoded data.  It’s been decades since people with Down syndrome are typically committed to mental health institutions.
• Rush. Of course, aborting a fetus means you have a time consideration and  generally, you have a small window of time to decide.  I recall so clearly the emphasis made on genetic counseling to decide whether or not to have an amnio.  Genetic counseling teaches you the medical issues about fetuses with the conditions they can test for as well as the test.  What they don’t tell you is what those conditions mean; I’m gathering from the article that doctors often do not paint an optimistic picture of caring for and raising a child with this disability.

I’m writing this article to clear these issues up.

HEALTH
First of all, there is nothing more to fear with a child with Down syndrome* than any other child, excepting  if your child has a heart defect. This is fairly typical, however, keep in mind that the heart is one of the organs in the body that quite a lot is known about about and quite a lot can be done surgically and otherwise to fix problems.

Shortly after Amelia was born, we discovered that she had a tiny hole in her heart. In fact, her heart grew as the hole – the size of a pinpoint – grew, and in another area where she had issues, the growth of her heart acted as a kind of bandage over the hole.  She has not needed surgery or had any issues, although we did need to monitor her as a child and every 2 years she gets a sonogram.  Now, we do also have issues with sinuses, there is a slightly elevated chance of  leukemia and thyroid issues, and Amelia did not have hypotonia.  Still, children are not a guarantee and I just read that kids who have leukemia and Down syndrome have a better survival rate than kids who don’t have Down syndrome. Wow, so don’t make your chicken sick before they hatch…

ABILITIES & DISABILITIES
As you know, Amelia has learning disabilities.  While she is not academically up to the level of a typically developing 6 year old, she is not so far  behind that I can’t see a good future for her. I fully expect her to go to high school, and possibly, college.  More and more colleges are now trying to set up programs to help these youths become fully integrated students and members of society. I have no doubt that she will live on her own and be gainfully employed doing something she loves.  She may even marry!

Sure, we have to work a little harder and I may have to fight a bit more, and on any given day, the paperwork for my kids can be stunning.  But this is just part of being a good parent.  You don’t know what your kids will deal with, but for sure, they will deal with something and you may have to put on your boxing gloves and show up at the ring.

What I’ve gained: a beautiful, happy, infectiously ecstatic child, who loves and appreciate people and nature, who screams “mommy!” with peels of glee whenever she sees me, patience, advanced track on spirituality, gratitude, a better marriage.. really, I could go on and on.  I am glad that I never chose to abort that pregancy and I think many others would feel the same if they learned more about Down syndrome.  Or maybe I’m just a hopeless optimist, lol!

Now that you know a little, I encourage you to learn more, particularly if you know anyone getting an amnio or CVS, or anyone who has a fetus or child with this condition, or comment me with any questions, or ask a family who has a member with Down syndrome, or get out there and meet some of these wonderful people!  Here is a list of resources:

• Down Syndrome Myths & Truth (scroll down under Sarah Palin press release)
• Why The Abortion Rate for those with Down Syndrome is over 90%: Kristy at the wonderful Mosaic Moments shares her thoughts and argues for keeping the pregnancy.
• Down syndrome “typical” symptoms from WebMD.  Remember, every child is unique so these are not “guaranteed”.
• National Down Syndrome Congress site: we are ALL more alike than different!
• National Down Syndrome Society
• East Penn Down Syndrome Center for those located in and near Lehigh Valley and Allentown, PA

Share your resources, stories and questions in comments!

*Note that Amelia has Mosaic Down syndrome, which is very rare and slightly different, in which the continuum of affected health, physical, and mental issues may be somewhat to the higher end of functioning.

Planning the Future: How does a special needs parent start?

I’ve been giving a lot of thought lately to my kids, and a bit less thought about their futures.  In my heart of hearts, I know this is not correct, but sleep deprivation and my sense of overwhelm have put me lately on a day-by-day management track.  That is, it’s taking everything right now just to get through the day.

A series of things has happened, though, that has got me thinking about more long-term planning for my girls.  First, Zoe had an IEP last month that I was NOT equipped for, in terms of prep or alertness, and I showed up alone while they brought in the big guns.  I tried to negotiate to get her an extra day of school and, in my failure, I am now paying the price as she is super-resistant to going AT ALL.

Chris and I have been discussing converting her huge, empty walk-in closet to a study, so that she has a place for homework and nothing but educational things on the wall, like sight words and number lines.

Amelia has been having great difficulty with homework, which made me realize that our decision to put her in full inclusion – which I still believe was the correct option – came without me really understanding what it meant. I made some calls and got some support and information.  Meanwhile the school called for a new IEP since her old one recommended something other than full inclusion, which is all they offer, so that is set up. In addition, she has a new eval for TSS services scheduled next month, and if a TSS in school is required, that should cover it.

In addition, I’m reading a parenting book for review (I won’t divulge yet) and one of the things it covered goals for your family.  Then today, I took a look at this page which contains a video ad for life planning for special needs parents on the inside cover:

Exceptional Parenting Magazine

The timing on these things was pretty simultaneous, and it got together one point for me: we need to plan realisticly and completely for our kids’ futures.  We talk about this sometimes, but for now, I can start with the IEP planning and what we want for Amelia’s education.  I’m also going to be in there to ask her teachers what I can do, without becoming a teacher myself.

For those of you have special needs kids, what was the defining moment where you decided to plan for your kids’ future? What did you do?  How did you begin?  I want to hear your tips and advicse to help me raise kids who are happy and lead contributive lives!

Autism, Down Syndrome, & Environmental Factors: Cause for guilt?

Today I read, “Considering the Cause of Autism“, and I think you should read it. It’s terrifying in its scope of statistics.   Then I read the end, which said that pregnant women today need to completely detoxify.

Maybe I’m just reading this on the wrong day, because I am having a “can’t do anything right” low self-esteem day, but honestly, with that many toxins out there, how?  What about someone like me, who has to take injections just to survive the pregnancy?  What about someone who can’t afford to buy all her water and eat everything organic?  (I mean real organic, not the hyped up fake stuff.)

What about shower water? Soaps and shampoos?  Swimming in pools or lakes or even oceans?  The HVAC system at the office?

And, where is fate in all this?  Can a woman honestly control all her environmental factors?

You can look at me and say Amelia got Down syndrome because I was too old (36), lived in the city, worked in an office, and ate junk food.  Or you can say I have a sensitive system and that’s the root of Zoe’s sensory issues.

Or, you can realize that sometimes it’s a spin of the wheel of fate. If all the above WERE true, why didn’t anyone -or everyone- else in my family (chock full of late in life, full time working, city dwelling moms) have a child with these conditions? And the more I learn, the more I just fear.  I can’t walk into any supermarket now without feeling like someone is out to get me, and on the checkout line, no matter how careful I am selecting healthy choices, I feel like I’m pushing dope on my kids.  It’s like food comes in two varieties: the kind that kills you and the kind I can’t afford.

Life is just this: a crap shoot, where everything happens for a reason. There are smokers who will never get lung cancer, and lung cancer victims who’ve never smoked.  I’ve done way too much duty on the guilt train and I’m done with it.

What are you thoughts on toxicity and pregnancy?  Is this part of life we have to accept, or are we on the road to doom? Can we really do anything about it?

Thank You, Special Needs Champion Eunice Kennedy Shriver

Yesterday, Eunice Kennedy Shriver passed away at the age of 88.  She was the founder of the Special Olympics and used influence on her brother, JFK, when he was president to further the cause of rights for mentally disabled people.  What really impressed me in this article is that her own first-hand, physical experiences with disabled children at a summer camp led her to believe that these kids could do so much more and the idea for the Special Olympics was born.

The article had this quote from her son:

“She believed that people with intellectual disabilities could — individually and collectively — achieve more than anyone thought possible. This much she knew with unbridled faith and certainty,” her son Timothy, chairman of Special Olympics said in a statement.

Her long time friend Colman McCarthy said this about her in another article:

“She truly believed, and she instilled in those events, the idea that it’s not what you achieve in life, it’s what you overcome….she sprung open doors globally for the mentally disabled and opened minds that had too long been closed to accepting people with Down syndrome and other disabilities.”

We need more people like this in the world today. Her son is the chairman, and she even encouraged her son-in-law, Arnold Schwarzenegger, to be a Special Olympics coach, proving that we can ALL pass it on, and not just to our kids.

All this inspired too by the fact that she had a mentally disabled sister, Rose Kennedy.  (See? It all happens for a reason.)  Rose was sadly lobotomized at the age of 23.

Well done, Mrs. Shriver, us special parents owe you a debt. Rest in peace.  See a beautiful memorial here, with lots of words of wisdom for the special people in our life.

Image Published under GNU Free Documentation License, Version 1.2

Next Page »