Tools That Rule – Special Needs Toys

Sorry about biting the dust yesterday.  You know to go to bed when the computer screen starts sliding off to the right.

But I’m back today.  Got a new tool for you!!  In the interest of disclosure, I have never used them, so this is just information…  Not a review.

From their About Us page:

We are providers of carefully selected fun products designed to help you or those in your care enjoy life, and achieve more. Use this site and our catalog to stimulate your imagination, begin programs, or reinforce encouraged behaviors, there is a lot that we can achieve…while having Fun.

TFH is committed to offering the best customer service available.

I believe they also have related sites catering to adults with special needs as well.  They have everything from games to special clothes (helping learn to fasten) to full support swings.  If this is a need of yours, please, go check them out.

Out Sick

No update today folks…  I gots myself a fever.  Be back tomorrow, hopefully, more more tools for you.

Tuesday Blogger – Gabi’s World

dsc00696_edited-1.JPGToday’s Featured Blogger is the writer of Gabi’s World.

Here’s her interview:

SNP: What is your name and where do you live?

I am Shannon aka Gabi’s Mom, and we live in Southern Indiana.
SNP: Your website title and url?

I blog at Gabi’s World. (

SNP: Your kids’ names, ages, and disabilities?

In order of age our kids are Jeremy 15, Christopher 12, Anthony 11, Gabriella (Gabi) 8, and Preston 1. Gabi was born with Trisomy 21 (aka Down syndrome) and Tetralogy of Fallot (ToF). ToF is a congenital cardiac defect. Gabi had open heart surgery to correct her heart defect when she was 3 months and 1 day old.

SNP: Do you blog about their issues? What do you personally get out of that?

Not only do I blog about Down syndrome, but my family jokes that I blog about everything! While not entirely true, I do blog about most of our life events and funny stories.

SNP: What does a “typical” day consist of for you and your family?

Besides blogging, Sesame street, Dora The Explorer, and Barney, what else is there? No, just kidding, but somedays are like that. On a typical day, Gabi goes to school (which she loves by the way) and I am home with the baby blogging between diaper changes and bottles. Once Gabi gets home, it’s always an adventure!

SNP: How have their disabilities effected the children specifically? And the family as a whole?

As far as my kids are concerned, I think their relationships are pretty typical of most siblings. They play, argue, laugh, fight, etc… The family as a whole has had to learn more patience. Dealing with Gabi is more like dealing with a 4 year old, and often we have to remind ourselves and each other that even though she looks like an 8 year old on the outside, we have to adjust our expectations a little bit. Don’t get me wrong, this girl surprises me often with her accomplishments, but to expect her to act and behave as a typical 8 year old just isn’t fair.

SNP: How have their disabilities effected you as a person and as a mother?

When I was pregnant with my oldest child, I used to think I was going to be an awful mother because I had absolutely no patience. I found out after he was born that I had a little more patience than I thought (but just a little). Jeremy was a a very easy child though, and so was Gabi until she became mobile. Wow, things really changed after that! She started becoming very stubborn and was difficult to keep up with. Also, she started having a lot of tantrums related to the frustration of not being able to communicate her needs very well. The few signs she knew helped, but she remained frustrated if I didn’t understand what she wanted right away. I remember I used to pray to God daily for patience with her and sometimes I just had to go in another room for a good cry and prayer. Of course, God taught me patience through my experience with Gabi. Today, her meltdowns are less frequent.

Being Gabi’s mom has even helped me in my profession. I am a Registered Nurse and patience is a much needed asset for a nurse. And when she had her open heart surgery, I learned the perspective of being the mom of the patient. It’s so much more comforting for parents to hear “I’ve been in similar shoes and I understand why you have those feelings.”

SNP: What did you do right? What do you wish you had done differently?

I wish I had spoke to other parents like me when I was pregnant and as Gabi was growing up. Last year, I was introduced by a friend to a message board for parents of kids with Down syndrome, and it was a Godsend! It’s so nice to be able to turn to parents who have been there or are currently going through similar experiences. This would have been a great resource in those days that I spent crying in my room out of frustration.

What I did right was to trust God even though I didn’t have a personal relationship with him yet. When I was told that my unborn child was at increased risk of having Down syndrome related to my Triple Screen results, I never prayed that she wouldn’t have Down syndrome, I just prayed to God that if having a child with Down syndrome was the job he wanted me to do, then I will accept it.

SNP: What do you want other parents fighting the same fight to know?

I would want other parents to know that their feelings are normal no matter what they are. There is such a wide variety of reactions parents have felt upon getting the news that their baby will have Down syndrome. There is no right and no wrong to how they should feel. Reach out to others who are going through the same or similar experiences. Buy the book Gifts and read it. Contact your local Down syndrome support group. And most importantly, trust God, for your child is made perfectly just as God intended him or her to be.

SNP: Anything you else you wish to share?

The story of how I found out about Gabi’s diagnoses and her heart surgery is located at my website.

Thank you Shannon for taking the time to answer my questions!

Monday Headlines

**Disabled Children Better Off Aborted

Seriously disabled children should be considered non-persons and would be better off having been aborted, according to a Peer speaking in the House of Lords Tuesday. Attempting to couch her assertion in terms of children’s “rights”, Molly Baroness Meacher told the Lords that children born with severe disabilities are “not viable people”.

**This one really chapped me.

High Tech Devices Help Kids with Disabilities

Ever wonder if the advances in technology are really making a difference for children? One family no longer wonders. Michael is a typical 11-year-old boy who loves fishing and music, but he also has cerebral palsy.

Treating Teen Panic

Boston University Center for Anxiety and Related Disorders… recently launched a new website offering resources for parents of adolescents with panic disorder and other anxiety disorders. The center offers cognitive behavioral therapy treatment (i.e., no medication) with free treatment for qualifying families.

**Can Music Aid an Autistic Child?

“I had autism,” said Ashley, 8. “[Mozart] helped me speak … it made me the same from all the other people.”

**I’m not too sure about this.  Can Autism be cured?  Asking the parents here.  This article is part 1 of two.  I’m putting it in my bookmarks to see if I can find out when part 2 comes out.

A Child’s View of Attention Deficit

What does it feel like to have attention deficit disorder? The answer to that question can be found in a fascinating new report from the Journal of Pediatric Nursing called “I Have Always Felt Different.’’ The article gives a glimpse into the experience of attention-deficit hyperactivity disorder, or A.D.H.D., from a child’s perspective.

Online Petition for Tax Break

I’ll be honest, I never know what happens with these online petitions.  I truly don’t.

But in this case, I signed, and am passing on the information because it can’t hurt right?

Here’s an excerpt:

Every year during tax preparation time, we find that there are no tax breaks for the inordinate amount of money we spend on our children’s needs. Parents of healthy children get tax breaks for college tuition, yet no one is required to attend. The parents of special needs children, who may or may not ever be able to attend college, do not get tax breaks at all.

Parents pay thousands of dollars yearly in educational and therapeutic bills which the school districts and/or insurance do not pick up.

Click here to see the full petition and to sign if you so choose.

Free for All Friday

Well…  It’s that time again…  Got a grievance?  Got a complaint?  Got a praise?  It’s free-for-all-Friday!  Let loose in the comments.

As for me, I’ve got a gripe that maybe you all can help with.

As I’m sure you can all understand, babysitters are an issue with me.  Because I don’t necessarily know what my oldest is going to do…  I can’t just hire a teenager to come in so my husband and I can have a date night.  Rarely, when really necessary, my parents can do it – and they do help out a lot.  Just BOTH kids is a little much for them, as my mom is really ill (I’m a bona-fide member of the sandwich generation.)  But my husband and I, to keep our relationship solvent, really need to reconnect on a regular basis, and that’s just not happening.  We’ve had one date night in about the last year.  That’s just not good enough.  That time, my best friend came over.  But she can’t do it on a regular basis, because she’s got her own family.  And thus exhausts the people in my life I trust with my kids.

We’ve tried getting respite care through the therapy center Joseph attends.  So far, they’ve been unable to help us.

So that’s my question to you all – do you have any resources as to babysitting for special needs kids?  What do you do?

Thursday Tools – Online Groups

One things that seems very universal in terms of parenting special needs kids is feeling solitary.  Like you’re the only one dealing with it and everyone else has “normal” lives.  It’s isolating.

I belong to an online group at Cafe Mom.  There are tons more…  check out the social groups in any social networking site you might use – you’ll be surprised at what you find.  Not only will you find a clutch of people dealing with the same crap you are, those parents are usually great to listen, or giving advice.  If they’ve been there, they can help you.  And…  You’re not alone anymore, and I think that’s the most important part.

Join up, do your profile or whatever that site has you do.  And read.  And read some more.  And when you feel comfortable, jump in there.

You just might surprise yourself with your knowledge you can share – and you just might receive the kind of listening you need.

Definition Wednesday

Today is definition Wednesday, but I thought I’d take a bit of a departure for my usual topical thing and ask you…

Are there any terms that you’ve run into recently that you would like defined?  It could be diagnosis, therapies, tools…  Let me know!

Tuesday Blogger – On Hold

Tuesday Blogger is on hold until I get some interviews in…  I’ve currently go 4 outstanding, and let’s face it – these are busy mommas!  I don’t feel right pressuring them.  So, I’ll continue to find more, send out more interviews, and hopefully someday soon there’ll be a backlog, which is good!

Monday Headlines

Experts Call for New Approach to ADHD

The study showed that only about half of children diagnosed with attention-deficit hyperactivity disorder, or ADHD, exhibit the cognitive defects commonly associated with the condition.

There’s Still Hope if Someone’s Heart is Out of Control

McKenzie Meza is just 8 years old, but she has a story that cuts to the heart of the matter for the 30,000 children born each year with congenital heart defects. Next Saturday, she will tell that story at the Heart Ball, where she and her mom, Kristyn, will be among the guest speakers.

Rehab Center Introduces New Gym 

By just observing little Sadie Jackson move about The Rehabilitation Center’s new therapy gym, one would never guess she was being treated for Sensory Integration Dysfunction.

Disabled Children Need Health Care

Robb opposes the governor’s proposal, stating that “private health insurance for kids and young adults is readily available and relatively inexpensive.” He further states that “the accessibility issue is related to older adults with health problems.”

**Autism Changes Everything 

We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations.  If we continue our current trajectory, we’ll get there in my lifetime.

** I’m including this article.  However, I should note in the interest of full disclosure, I’ve been asked to remove my link to Autism Speaks – and been at least questioned of it’s existence in my blogroll by others.  From my admittedly rudimentary understanding of the controversy – It seems that Autism Speaks aims to be the voice of Autism, and others feel that they can speak for themselves, thank you.  Others feel as if the leaders wish to cure Autism – and in the process eradicate the human that exists.  That’s my basic understanding, feel free to correct me.  However, when an Autistic adult says, “I can speak for myself, thank you,” I have a tendency to listen.  But I’m leaving the Autism Speaks link up in my blogroll.  This site is meant as a jumping off place for others – not for me to place judgment on an issue that I personally am not a part of.