Free for All Friday

So!  Did someone tick you off?  Make you mad?  Make you sad, glad etc? (I could so go into Dr. Seuss territory so I’ll just stop.)

Here’s your chance to vent – good or bad.  Share!

Thursday Tools

So I was just sitting here scouring my brain, trying to come up with a tool to highlight for today.  Commenters (ahem) have not been forthcoming with what they use, or questions about what to use in a given situation.

Lo and behold, I went to check out Kyron’s updates – and what do we have?  A TOOL!  But – it’s not my idea it’s hers, so go check out her post on The Dictionary for Parents of Children with Disabilities.

Some Links You Should See

For those parents dealing with Autism, a few links for you.

The mom who sent this to me is a huge advocate and a true resource.  She has two children, both are special needs.  It’s her youngest that has Autism.

She notes that you’ll want to read them all in order – and it will take a while.

For years we tried to train [her son] to look atpeople when they talked to him.  Stupid us.  One thing this woman said about her autism just gobsmacked me.  “I can either look or hear, not both.”  I had no freaking idea.  I’m ashamed of us for not realizing.

Know this going in…  It’s hard to watch.  The first is a production by a woman who has autism.  The second and third are about the autistic community’s reaction to it,  and an interview.

Getting the Truth Out

Neurodiversity Weblog

Autistics Speak

I don’t have an Autistic child.  But the Autistics have something to say.  In my opinion, they’re saying, “Don’t speak for me, I can speak for myself.  Do not assume that I cannot.”  Even if you don’t agree…  aggitation that leads to thought that leads to action that leads to change is a good thing.

Definition Wednesday – Central Auditory Processing Disorder

A condition in which there is an inability to differentiate, recognize or understand sounds while both the hearing and intelligence are normal.(In technical terms, a central auditory processing disorder is a disease of the auditory pathways from the bulbar cochlear nuclei to the auditory cortex in the temporal lobe. Structures involved in such a disorder may include the medial and lateral lemnisci, inferior colliculus, and the medial geniculate nucleus.)

Definition Source: MedicineNet

Auditory Processing Disorder (APD) (previously known as “Central Auditory Processing Disorder” (CAPD) is a disorder in the way auditory information is processed in the brain. It is not a sensory (inner ear) hearing impairment; individuals with APD usually have normal peripheral hearing ability. APD is an umbrella term that describes a variety of problems with the brain that can interfere with processing auditory information.

Definition Source: Wikipedia

Other Resources:

Records? Keep ’em.

Click here to see an awesome post by Donna explaining the need to keep your child’s records properly.

Featured Blogger Tuesday

KyronOur featured blogger today is Kyron from The Special Parent. Go give her some love

SNP: What is your name (Online handle is fine) and where do you live (generically is fine)?

My name is Kyron Arambula and I live in a suburb of Atlanta, GA

SNP: Your website title and url?

The Special Parent –

SNP: Your kids’ names (online handles fine), ages, and disabilities?

Katherine is 16 with the following disabilities

Stroke (before birth)
seizure disorders
developmental delays (her most recent test puts her IQ at 48 overall)
psychosis NOS
bipolar disorder
complex migraines
mitral valve and tricuspid valve prolapse
high blood pressure
hyperthyroidism (secondary to lithium usage)

Donovan is 2 and so far is the “typical” half-sibling

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

I do blog about Katherine. I hope that a few things come from blogging directly about her. I hope that parents struggling with any number of issues understand that they aren’t alone. I hope they understand that no parent is perfect and that we’re all just finding our path on this journey. I mostly hope that by writing about some of the issues that Katherine and I have faced or are facing will help parents avoid missteps and be able to provide them some shortcuts/strategies or breadcrumbs to follow on that journey. In addition, the blog also includes a hefty amount of tips and tricks as well as analysis on current events. We also have reviews on products and services that we’ve either used or seen that we feel can be useful to others. I wish that I had access to something like this to depend upon during much of our journey.

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

Our typical day is praying for a day that’s typical. Honestly, Katherine’s bipolar issues mean that things can change on a dime. I guess as typical as it gets is getting Katherine up and ready for school and on the bus. Then we pray for no call from school about behaviors. 2-3 times a week we have doctors appointments whether it’s psychotherapy, physical therapy or follow up with one of her specialists. Then it’s praying that she’s calm enough to get her through dinner and a shower and into bed medicated without a meltdown which sends the whole family haywire for anywhere up to 3 hours. On days without doctors, it’s a bit easier because we have more time to get Katherine through

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

I think Katherine’s disabilities have effected her abilities to maintain friendships because of behaviors and hearing voices. I also think that it’s limited her ability to progress academically because of extended absences for hospitalizations and such. The behaviors also have limited her abilities to participate in group activities because her attendance is spotty.

As for the family, it’s absolutely effected us. We don’t plan anything. We have to really think about outings, travel has to be by car because getting Katherine through airport security is a hit or miss thing. It puts us all on edge which is a hard way to live. However, that’s not the only effect it’s had. It has made all of us far more tolerant, more empathetic and more creative.

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

Personally it’s brought out a talent for advocacy that I didn’t know I had and a desire to help others navigate through all that comes with having a special needs child. As a mom it’s made me have to rethink how I would naturally do things to make it work for Katherine. I think it’s made me more able to adjust on a dime and very flexible.

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

Did I do something right? I must have as she’s a pretty great kid for all the issues she has. I guess what I did right on the overall is never give up on her. When doctors told me that she’d never walk or talk I threw them out and got her therapies to help her achieve those goals. When doctors said her behaviors just meant I needed to be more strict, I knew in my gut they were wrong and I just kept searching for resources to get her the help I knew she needed. I pushed until I got her where I thought she needed to be. I did similarly with school placements. I think my willingness to go to the mat for her made a difference. It was hard to learn how to nuance my approach to maximize results.

I am honestly not sure what I would do differently. Some of what we did was hard as hell but it was a process of learning and it’s how we’re here today. I may not love some of the stress that goes with the day to day but overall I love our life. It has highs and lows but we’re achieving so much for her and maximizing her potential. How do you wish to change that?

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

I would hope that parents would be able to look at blogs like yours and mine and know they are not alone. That they are not the only ones struggling to maintain at home. Fighting to get the doctors to see what they see. Pushing to get the school district to do the right thing. While our children may have different issues, we all fight similar fights. Utilize these resources to gain insight and follow footsteps. No need to go the path less traveled.

SNP: Anything you else you wish to share?

The other thing I want these parents to think about is that there is power in numbers. To get changes in disability legislation and education we need to be active advocates for our children. If those of us affected by disability issues stay quiet, those with the power to change things in a positive way for our children won’t utilize that power. The squeaky wheel truly gets the grease. That doesn’t mean you have to organize rallies or march on Washington. Just communicate with your legislators on important state and federal matters. I spoke with a Senator once who told me that if they get just 10 letters on an issue they consider it an important issue. Imagine the power we could have with hundreds or thousands writing in? Just food for thought.

I want to thank Kyron for taking the time to share here. And I hope you all go and give her site some visits, take a look around, and spend some time there.

Monday Headlines a no go

Nothing really caught my eye this week in my news feeds to share with you today.  Did anyone see something striking in the world of special needs kids?  Please share!

Free for All Friday

Got a vent??  Got a rant??  Got a praise??

Let em rip…

Progress is a beautiful thing

Joseph, as you probably know by now, is in both regular classes, and special ed, per his IEP.

The second graders had a choral concert today.

I was so proud of my son.  NO disruptive behaviors.  Adapted to what was going on.  He developed a tic to help him cope with all the stimuli going on around him.  Went with the flow.  Problem solved.

I was so very proud of him.  This means we’re making progress.  When you see it, tangibly, for the first time…  When it’s just so obvious…  It’s such a good feeling.  It was like, “Yes.  We will survive.”  With Joseph, it’s all about giving him tools to succeed.  What was so wonderful today was seeing him use them.

We will survive.

Thursday Tools

Okay people…  I need your help here.  TWO things:

1.  What do you need help with tool wise?  What’s the problem?  I’ll try and find some tools for you to solve that problem.

2.  What tools do you think work?