Eating my hat

Yeah.  So.  Remember how I told you about the rainbows and sunshine and flowers?  Not so much.

So now I get to eat crow, and tell you that no, hell has not frozen over, pigs can’t fly.  And let me know if you need to talk about the easter bunny, the tooth fairy, or Santa.

Yesterday – you know, the day we thought everything was grand with Joseph, and I may have allowed a wee little self-congratulating pat on my own back?  Yeah.  Joseph blew up.  He stole three items, and committed a violent act.  Great.  I’m trying to remember that he’s progressing, and we’re not back to square one.  But that’s hard.  Let me repeat if only for my own edification.  We are progressing, we are not back to square one.

Which brings me to my feelings yesterday.  Shame.  I don’t like the feeling.  Shame and embarrassment.  Of my son. When he behaves in a socially unacceptable way – I can deal with it.  No big deal.  My son is who my son is.  It’s when he does things that do harm to others, such as stealing, or hurting another child – THAT’S when my shame casts its pall.  Because really?  It’s embarrassing to have to bring the items back.  My son has no shame or regret (which is part of his disorder.)  It’s awful wondering if the other child’s parents are going to do something.  I mean – I couldn’t blame them if they did, my son hurt their child.

But I also feel guilty for feeling ashamed of my son.  I mean, truthfully, if a neurotypical child were to act as my son did, I’d blame the parents at this age (he’s 7.)  And I’m sure people, especially those who know nothing of his disorder, do the same.  I mean c’mon – he had his hands around someone’s neck!  No.  No one was seriously hurt – but that’s merely one of the reasons we’re trying to get his behavior under control.  The bigger he gets, the easier it’ll be for him to do serious bodilly injury while he’s unable to control himself.  And that worries me.

And I feel ashamed that I posted about his doing so wonderful, just to turn around and have him do this.

I almost didn’t post this.  In fact, I’m literally crying as I write.  BUT, I thought that would not be an accurate portrayal of life with a child with disabilities (or at least Joseph’s disabilities) so here we are.

However.  I’ve decided it’s ok for me to feel shame when my child hurts someone.  Ok.  Now it’s time to get over myself and go to Joseph’s therapist, and realize we’ve had a setback and now we need to learn from it, and move on.  Because quite frankly, it’s been MONTHS since one of his outbursts!  That truly is progress.  He’s getting 90%’s in math!  That truly is progress.  And so – we keep on keeping on.

Wednesday Definition – Angelman Syndrome

This week’s definition: Angelman Syndrome

Angelman syndrome is a genetic disorder that causes developmental delay and neurological problems. The physician Harry Angelman first delineated the syndrome in 1965, when he described several children in his practice as having “flat heads, jerky movements, protruding tongues, and bouts of laughter.” Infants with Angelman syndrome appear normal at birth, but often have feeding problems in the first months of life and exhibit noticeable developmental delays by 6 to 12 months. Seizures often begin between 2 and 3 years of age. Speech impairment is pronounced, with little to no use of words. Individuals with this syndrome often display hyperactivity, small head size, sleep disorders, and movement and balance disorders that can cause severe functional deficits. Angelman syndrome results from absence of a functional copy of the UBE3A gene inherited from the mother.

Definition source: NINDS

Angelman Syndrome is a rare disorder characterized by developmental delay; absence or near absence of speech; unprovoked, prolonged episodes (paroxysms) of inappropriate laughter; characteristic facial abnormalities; and episodes of uncontrolled electrical activity in the brain (seizures). Abnormalities of the head and facial (craniofacial) area may include a small head (microcephaly); deeply set eyes; a large, wide mouth (macrostomia) and a protruding tongue; an underdeveloped upper jaw (maxillary hypoplasia) and protruding lower jaw (mandibular prognathism); and widely spaced teeth. During infancy, feeding difficulties and abnormal sleep patterns are typically present. In addition, by early childhood, individuals with Angelman Syndrome have severe developmental delays; impaired control of voluntary movements (ataxia), resulting in a stiff manner of walking (ataxic gait) with jerky arm movements; and characteristic positioning of the arms with flexion of the elbows and wrists. Although affected individuals may be unable to speak, many gradually learn to communicate through other means, such as sign language. In addition, some may have enough receptive language development to understand simple commands.

In most affected individuals, Angelman Syndrome appears to occur spontaneously (sporadically) for unknown reasons. However, some familial cases have been reported. The disorder is caused by deletion or disruption of a certain gene or genes located on the long arm (q) of chromosome 15 (15q11-q13).

Definition source: WebMD More information:

Our parent teacher conference

Joseph’s parent teacher conference was this morning. Actually, it was this afternoon, but I changed it. I really didn’t want to cross the picket lines at lunch to get out there. I arrive in the morning before the picketers do, and then they leave before I do – I’m trying to get through this without crossing their lines if I can.

Anyway, back to Joseph. He’s doing great. Absolutely great. There haven’t been any major episodes or tantrums. The things he’s having trouble with in math are concepts everyone is having problems with at this point in 2nd grade. Some of you may remember his previous antics.

So – the IEP and therapy are working. Well. I should say, the IEP and therapy are working because of the constant communication between me, his teacher, his special ed teacher, and his therapist. It’s really working.

To be able to go to the first parent/teacher conference of the year – having NOT been called that year yet for discipline issues – and have them show me tests where he got a 90%??? The sense of relief is huge. Just huge. Finally – I feel like the hard work of advocacy is worth it. My son is showing progress. Real progress.

We may actually survive this thing.

This was cross-posted at Sparks and Butterflies as well.

Monday Headlines – Can Omega-3s Help Kids With Attention Deficit Disorder?

It’s estimated up to 12 per cent of children battle ADHD, or Attention Deficit Hyperactivity Disorder. That makes it a very real problem for families all over the world, though new research suggests a daily supplement of Omega-3 could go a long way in easing the strains of ADHD symptoms.

 Read Full Article Here

I suppose it’s not news to some parents…  But with our questions on supplements last week, I thought it was timely.  Nothing controversial here…  Just some information for those parents of kids with ADHD.  Do your research.

Friday Q&A

Got questions for me? Comments? Need to yell at me for something? Here’s your chance. It’s Q&A Friday.

In response to little miss know it all’s questions on supplementation, Sylvie asks:

are you getting any kind of respite/family resources help through your county? here in Ohio, if we have our son’s pediatrician write up a note for them, stating things like us wanting to give him supplements, etc.. they will reimburse us for money spent.

Just wanted to put it out there so others could benefit if they don’t read the comments.

Tools That Rule

Little Miss Know-It-All (I swear that’s her name, I’m not insulting her) left a comment saying she’d like some info on liquid supplements that taste good.  Her son has Asperger’s Syndrome, and they’ve been supplementing and experimenting for the last 6 months.  For her, expense and taste are both issues, and she wanted to know how other parents fared with supplementation and what they used.

We have not tried supplementation other than your basic multivitamin.  So, I started to do some research, and became COMPLETELY overwhelmed.

When I asked around, I got three recommendations.  For fish oil, I was told to try Nordic Naturals.  Seems like a decent price.  I was told it didn’t taste fishy.

For DHA I was told to try Braniums.   I was told that the taste was fine, but that looks awfully pricey to me.  Plus, it’s sold through a distribution system, so it’s not available in stores.

Reliv also came HIGHLY recommended to me.  However, it too is sold through a distribution system, and they don’t have specific products available online.  This is a nutrition product that’s a powder (like a protein shake,) and the friend who recommended it to me doesn’t sell it but knows someone who does.  She swears by it for her daughter.  Actually her whole family uses it, but she’s seen a marked improvement in her daughter who has polymicrogyria and epilepsy.

But really?  When I checked on amazon and such (I was looking for product reviews) there wasn’t much there.

That being said, though, I did find you a vitamin wholesaler online –  They’ve got children’s  formulas and remedies.  I figured if you know what you’re looking for, you may as well get it cheaper.

Now – we need you all to pipe in.  What kind of supplements are your kids taking?  And how much money are you spending to get it?  How does it taste?  Let’s get some product recommendations (or condemnations as the case may be) going here.  We may as well be the first to get the information out there.

Definition Wednesday

This week’s definition: Autism

Autism is a brain disorder that often interferes with a person’s ability to communicate with and relate to others. People with autism have different interests and behaviors from most people. In autism, the different areas of the brain fail to work together.

Definition source: WebMD

Autism (sometimes called “classical autism”) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs).  

Autism is characterized by three distinctive behaviors.  Autistic children have difficulties with social interaction, display problems with verbal and nonverbal communication, and exhibit repetitive behaviors or narrow, obsessive interests.  These behaviors can range in impact from mild to disabling.  Autism varies widely in its severity and symptoms and may go unrecognized, especially in mildly affected children or when more debilitating handicaps mask it.  Scientists aren’t certain what causes autism, but it’s likely that both genetics and environment play a role.

Definition source: NINDS

Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others. These disorders are usually first diagnosed in early childhood and range from a severe form, called autistic disorder, through pervasive development disorder not otherwise specified (PDD-NOS), to a much milder form, Asperger syndrome. They also include two rare disorders, Rett syndrome and childhood disintegrative disorder.

Definition source: NIMH 

More information:

Featured Blogger Tuesday

**Edited to add Steph’s interview **

Today’s blogger is someone I’ve known online via the various incarnations of our online journals (before blogs people) for years… Well before we had kids. As fate would have it, we both ended up being blessed by kids with special needs.

I’d like to introduce Steph from Sylvie’s Place. Her son has autism. Continue Reading

Celebrities and Their Children

Here’s an article from The Irish Independent about Colin Farrell’s feelings on having a child with disabilities.

Irish Independent

Hollywood superstar Colin Farrell yesterday opened his heart and revealed that his four-year-old son James is a special-needs child. The renowned Irish actor revealed that his treasured son was born with a rare form of cerebral palsy called Angelman Syndrome.

Read the Full Article Here

So what?  Well, I’ll tell you why I think this is important.

For better or worse, celebrities get a lot of attention from both the public and the media.  For better or worse, they are in our vision.  For better or worse, they are role models.

Celebrities are in a unique position to get the word out about causes, yes.  Yes, they raise money at galas and functions yaddayaddayadda.  But when a celebrity stands up and says, “Here’s my kid.  I love him.  And this is his normal,” well…  That means that now people have seen this child.  This child has been in the media.  And now a plain old Joe Schmoe has seen this child.  And tomorrow when they go to the store, and see another child with the same disability, maybe, just maybe, his view of “normal” will be skewed enough to let the little soul in.

Celebrities have the capacity in their hands of normalizing disabilties in the public view.  Again, I’m not even talking about fundraising.  I’m talking about our kids being viewed as “normal” in society.  I’m talking about society realizing that there IS NO NORMAL.  I’m talking about our babies having less of a chance being stared at in the grocery store.  Less of a chance in being left out in school.

Less chance of hurt.

I can get behind that.