Special Needs Parent Monthly (#1)

Welcome to the kick off of a NEW blog series, where MONTHLY, I will feature a Special Needs Parent. If you are interested in being considered as a featured SN parent in a future posting, please email me at melmom2angels@yahoo.com.

First up is Robin. In her own words, she will tell of herself, her family, and her life with having a disabled child.

basic info....stay at home mom, married 16 years in Feb., I enjoy reading, photograghy and word games.

have 2 sons Derek 11 and Jacob 13..

life as a special needs parent well, I don't sleep much lol. it's a struggle to balance my time between my sons since Jacob needs so much of my time. Jacob was dxed at 2 years, he was a good baby, well a great baby...only cried when he was hungry. Everyone was jealous but in the back of my mind I was worried. He was To good! He didn't regress, he just reached milestones late. He didn't babble, point, or "play" like other kids his age. He started PT at 8 months, Ot and speech at 18 months and early intervention at 2.

He is in the 8th grade and I'm going to start home schooling next because he will be going into high school and I feel like he will benefit more from one on one and I can pay more attention to the areas that of important to Jacob. He LOVES music, football, water, and food. lol which is a challenge because he is on the gf/cf diet.

He's a good dancer. He has severe IBS and when he is in pain he becomes very aggressive. He doesn't know his own strength. He gives the best hugs in the world! He has a lot of sensory issues and likes deep pressure and massage.

He likes to be petted on his arms some times which gets us strange looks in public. lol Doesn't bother me, I'm outspoken if people are rude I let them know about it.

Autism is just part of our family....you learn to adjust your life accordingly. Jacob is non verbal so I am his voice....and I have a big mouth (hehe)!

Enabling vs Disabling

Thanks is going out to a fellow Special Needs mom, Amy, over on FaceBook, who I have become friends with, and her "push" for me to post the following.

We met in a WONDERFUL group for parents like ourselves who are parents to kids that are disabled. And it's a locally-based group for our region, but we accept people from outside the Virginia state lines, as well.

The group is called Parents For Progress, or P4P for short. Our kids have ALL different types of disabilities and mental capacity. We sometimes DO disagree, but never get cut-throat.

So without further ado...

Just two summers ago, I learned how to swim/float for the first time. I was 33 years old (now 35)! If I had what I needed to have done BY the time I almost turned 6 or 7 years old, then I would have learned to swim much earlier, among other things.

Sometimes, even all of these years later, I can find myself angry at my mom for disabling me even more and literally taking away my childhood. And I refuse to let my son to think/feel about me, let alone his sisters for doing the same to them.

I love my mom, and always will. But ever since I can remember, I vowed and have kept my word to it, to NEVER be like her, where parenting is concerned. Even after she had died. And to this day, I will have a moment of anger and resentment pop in to my head. Especially around the anniversary of my "official removal" of my trache tube (December 1, 1989... not even two months after my mom died).

Heck, the way I have been told in the past, I was THE reason why my parents never had anymore children after me. She was scared another baby "would turn out to have the same problems"... Um, MY problems were *somewhat* because of her (having a 50 LB tumor sitting next to me in-utero).

I was extremely tiny and lightweight at birth. I was born almost a month early with extreme fluid on my lung (which collapsed from the pressure and weight of the fluid) and a esophageal fistula (a break in my esophagus tract to determine between the airway and the stomach routes). I died on the operating table like 2 to 4 times in the 18-hour repair surgery (after a touchy care-flight ride to another hospital when I was LESS than 24 hours old), which forever changed the appearance of my shoulder blade area on the right side (and left me asymmetrical in the breast area).

From the day of my birth, she basically (at first, I understood being that I was so tiny and helpless, and gravely ill with having NO hope for a chance at life, really) became a "helicopter mom". Later in my elementary school years, she was STILL so overly protective, that not only did she volunteer, but also was a yard duty person at lunchtime, a lunchroom supervisor, but decided to also become an "assistant" for MY classroom or one near me as to "keep an eye on Missy"... In other words, I had NO break from her. She watched me like a hawk. 24/7. If I did go to a friend's house, most times, she would constantly check on me in one way or another.

Now, maybe some people, especially fellow parents, like myself, of disabled children, can see it from our kid's perspective as well when it comes to being either too lenient, too harsh or too overprotective (or even NOT protective enough).

I know all too well the fine line EACH AND EVERY ONE OF US walks on a daily basis with our kids. It's such a difficult balancing act. But they also thrive on being treated as "just another normal kid". Even when getting in to trouble.

NT Parents vs. SN Parents

I am a mother.

I am a mother to three children.

I am a mother to three kids, where one of them has "problems".

I am a mother to three kids, where one of them has "problems", but that I love all equally.

You say that there is NO way you could do what I do, put up with what I put up with, and defend what I have to defend.

You say we are a strong, but rare breed. But there are more parents like me than you most likely even know. Because we don't look to be recognized or placed on a pedestal.

We do what we have to do, when we have to do it, as to ensure that our "special" kids are getting everything in life that they deserve.

That includes being as close to "normal" as we can get them. And to obtain the specialized services, that though are supposed to be rendered by Federally mandated Laws, are not always put in to place.

We rejoice at what most people take for granted. Especially when they are "late bloomers". We cry from the frustration. Not just our own, but the frustrations that our children display.

We want what ALL (okay, MOST) parents want for their kids. A better and fulfilling life.

You and I aren't THAT different in the world of Parenting. We, like our children, just do things a little bit different from the rest of you. And we see things (like first words, first steps and the other norms of growing up) a tad bit differently as well.

Other than that, I'm not much different from you. And yes, you CAN do what I do on a daily basis. Because when push comes to shove, when it comes to your child, you would do most ANYTHING and move every mountain and boulder to help your child achieve their very best potential.

Do I want to just throw my hands up and quit? YES! Sometimes, the fight to help your child achieve can really tire you emotionally and mentally. As can their daily struggles and fights of will. But in the end, no matter how much you want to just turn around and walk away, you CAN'T. You know for a fact that you have invested WAY too much time, energy, and most important, love in to helping your children succeed to the best of their ability.

So, the next time you think to yourself that you could "never do my job as a parent", or think I must be a lot stronger than you, take a step back and think, and know that when it all comes down to that fine line in the sand, there is really no line at all.

Schoolward Bound. Fifth Grade, Here He Comes!!

This past week we are about to leave, and the one that is coming upon us has been and will be fairly busy. It's back to school time. And I think that ALL of us are ready. For the most part, anyways.

This week was filled with filling out paperwork, taking in paperwork to be filled out by Medical Professionals, a doctor appointment and school supply shopping.

Geez! Just thinking of what I just listed, I'm tired all over again! *hehe* (=

This coming week, it's REGISTRATION time! And this means now, TWO different schools for three different kids. My oldest is moving on to Middle School.

B is in fifth grade this year. And thankfully, I was able to place him in with my oldest's former homeroom teacher, who is the ONLY one of the three in their grade to be Special Education certified.

It also helps that she taught my HUSBAND when he was a kid at another school, for the third grade. And she started LAST school year to acclimate him by saying good morning to him, giving him his "morning hug" (their classrooms were next to one another at the time between the two grades). And she already has gotten an idea of what his needs will be with classroom placement and what will possibly work best to get the best ability out of his potential.

She runs a pretty tight ship. You do as expected, she is your BFF. You decide to make her life hell and not do as instructed, then your ass is grass. And he needs that kind of firm structure. And she is already on to his manipulations. BONUS!

Do I worry? Yep! But not as much as I have with the teachers of the past in regards to B. This lady is one of the best in her field. And one of the most patient and kind. But also one of the most strict and not able to be bamboozled, too.

I'll more so worry NEXT year, then I will THIS year. Because there is a VERY good chance that B and his older sister will NOT be in the same Middle School, being she was accepted in to a school across town that takes those that are highly advanced/gifted. If she is able to remain there next school year (2012-2013), then he will be in our Zone School for Middle School all on his own.

Yes, he too is advanced in most areas of study. But he doesn't have the work ethic and focus for a Gifted Program. Thanks to his emotional instability, lack of maturity, and his severe ADHD it takes him out of the running for advancement such as what his sister is in. And it hurts me. But at the same time, I can safely say that a setting such as that is clearly not for him.

Should I compare? No. But it is extremely hard to NOT see the difference versus the similarities.

You sometimes, I feel, HAVE TO compare the "odd one out" to the others because it forces you to see just how different the one with the problems truly is from most of society. It makes you step back and think a little more and be more compassionate, understanding and willing to have more patience. Not just with YOUR child with Silent Disabilities, but other children (and adults) with the same afflictions as well.

So, here is to (hopefully) smooth sailing for this school year. In just over a week, and then all three are off on another school-year adventure of learning and fun. But this year, it will be minus their big sister. And I think they will do just fine.

Inclusion...As it should be.

My child has mental health issues. They do NOT have him, though. He may have his quirks and his ways of viewing the world around him. But when you get down to the brass tacks of it all, he is just your average, ordinary, everyday kid who loves, loves to be loved, plays hard and loves to play with others (most of the time).

Also, we got his SOL (Standards of Learning) scores back from taking them for Reading and Math. He placed Advanced in both. One of them (Reading) was a 2 hour to 2 1/2 hour test. He was able to go to another area to take his test and have as much time as he needed. He felt less stressed and anxiety-ridden, and felt more at ease at knowing that he could just take HIS time and not feel any pressure.

We are now officially out of school for the Summer. But we are getting B in to the Day Treatment Camp. And I already have his new Homeroom teacher lined up for next year. She is the ONLY one of the three in the 5th Grade Unit Special Ed. certified and is already acclimating him to be with her. In fact she started it MONTHS ago, seeing as they are only three doors down from one another. I love H's (now former) teacher!

     (My niece who is going to be a Senior in HS and B at the family reunion)

     (Five...yes, F-I-V-E generations of my husband's late Grandfather's side of the family. 7 kids, 16 grands and 32 great-grands, and 1 great-great grand. NOT all pictured here, but includes spouses/significant others, with my son in very front in red shirt and blue shorts.)

                (B in the school's Field Day race this past Thursday.)

Verbal Abuse/Assault. I'm tired of it.

Verbal assaults. Gotta love 'em. Yeah, I just LOVE getting yelled at by a ten year old. And over what are seemingly mundane things.

Like getting up for school and being told that I will NOT "cater" to his every whim as if he is a two year old.

This merry-go-round is getting to be an insanely OLD ride. I want to get the hell off the damn thing.

Why me? Why am I to be the "lucky" one to be bombarded in this manner? I'm just completely TIRED of this shit.

All I hear from Bryce is that he is a "tween" and is ten years old. And that he is a "big boy" now.

But each time he acts the way he did this morning, I remind him that he is NOT acting his age and that for being a "tween", he being more like a "toddler".

I came THIS close to back handing him in the face for being so verbally abusive to me. Telling me to shut up and to not tell him what to do. And for yelling at me for MAKING HIM get up for school.

Now, for the next 4 to 8 weeks, he will be WITHOUT his Nintendo DS, computer time and be in bed by nine o'clock EVERY night (including the weekend). If he keeps pushing me, it's going to be moved back to 8:30 or even eight PM.

I'm at a point where if this crap doesn't change, and soon, I'll seek out a detention home or a group facility for the behaviorally challenged (which there IS one or two in our area for kids with these types of special needs).

I deserve better than this. So do the girls. We should NOT be subjected (almost daily) to verbal assaults and threats. Nor should we be getting physically harmed due to my son's lack of control.

ADA and it's historical Significance

ADA, also commonly known as Americans with Disabilities Act, which is now integrating more and more Disabilities over the last couple of decades is an often misunderstood Federal Law. There seem to be more assumptions made, than having facts spoken of.

To get a better view about the ADA, please watch this video that is just a few minutes long.



Sadly, for those individulas who like my son, have what are called "invisible" or "silent" disabilities, getting the ADA to work for them is a chore, to say the least.

The less a person LOOKS disabled, the less likely that the ADA will benefit them. At least this is MY personal experience in regards to trying to have the ADA work in Bryce's favor. I'm still fighting to get simple accommodations at school. Not to mention, he is LEGALLY obliged to receive the 504 Plan. But again, the school is fighting me on that with mundane excuses.

Here's some facts about Invisible/Silent Disabilities.



We as individuals with invisible/silent disabilities and/or those as their caregivers need to get louder than we have been. We need to start shouting from the rooftops. Especially where CHILDREN are concerned. They are the most overlooked individuals.

Why? The simple answer is that because they are KIDS. Kids are stereotyped as being too young and should be able to have things "bounce off them" as if they were rubber balls. Basically, they are too young to be so inactive. Or too young to have "such things" (such as diabetes, which in its self can be QUITE debilitating).

Some children (and adults) don't "look" sick on the outside, but are debilitated on the inside. They may keep medical equipment within their vehicles, out of plan sight (which was the case with me as a small child), in case of an emergent situation.

For twenty years, the Americans with Disabilities Act (ADA) has fought long and hard for those that are VISUALLY (as in seen as they are physically disabled) disabled. Just within the past decade, that I MYSELF know of, have the silently disabled been justified with being included in the fight for Federal Law to also encompass their needs of inclusion and legal fairness to be seen and heard as having REAL disabilities and to be afforded the same rights and Due Processes as their visibly impaired counterparts.

I hope that this post has served it's purpose as being a learning tool, a historical piece, and a means to get more people involved in the movement to bring to light that those with silent/invisible disabilities can and ARE productive individuals within their communities and that they should be able to obtain the same rights and inclusions as those that are blind, deaf, physically and/or mentally challenged.

"...And The Little Children Shall Suffer."

These are a bit old, and one is graphic, but reality is what it is. Especially in places such as group homes. Not just here in the US, but many are like this ALL over the world, in various countries.

The following videos were filmed between the years of 2007 and 2009 in Bulgaria.

**WARNING! What you are about to see is graphic, as well as severely heartbreaking. But their voices NEED to be heard.**

(Part 1 of 5, view the other parts via YouTube, please.)



There is actually a Part 6, in which we see the transformation of how the residents are treated and interacted with. Milen at this point is about to be moved to a smaller group home setting.



As we can see here, it is a universal fear of parents, family members and others, that those in group settings such as this, globally, that we love and want the best for, in terms of Group Home Care for the Severely Disabled, as fellow human beings, would be sadly mistreated and neglected as we have seen in these videos.

But it does NOT have to be this way. These children (and adults whom also require group home care) need more than just a diaper changed or food shoveled in to their mouths. They need more than "basic" medical care.

If only more "employees" of these homes (around the world) would take TIME out of their "busy schedule" to find it WITHIN THEMSELVES to interact on a more personal level. Hold them. Talk to them, even if the child (or adult) cannot understand them. These people THRIVE on interpersonal interaction and a level of LOVING care.

"American Idol" Contestant Is Beating The Odds & His Competitors.

We can learn a thing or two from this up and coming music star who right now is in the TV Music Competition, American Idol.

Read about the contestant, James Durbin and his personal battle with not one, but TWO mental disorders/conditions. Tourrette's Syndrome and Asperger's Syndrome.

Copied/pasted from YAHOO! News Article.

James Durbin, the American Idol contestant often compared to Adam Lambert for his heavy metal edge and high-pitched wail, literally dazzled viewers—and the judges—March 16th with on-stage pyrotechnics during his rendition of Jon Bon Jovi’s power ballad, “I’ll be There for You.” Along with his flashy showmanship, the 22-year-old rocker from Santa Cruz, California has an inner fire that has propelled him to the top 11 so far in the competition, despite the challenges of battling two often misunderstood disorders: Asperger syndrome and Tourette syndrome.

At age 9, Durbin lost his father, a musician, to a drug overdose. After his dad’s death, he was put on medication for stress and a sleep disorder, then was evaluated at Stanford Medical Center, where he was diagnosed with Asperger syndrome (AS), a high functioning form of autism, and with Tourette syndrome (TS). “As I was getting older, at school people would tell me, ‘Cut that out! Stop that!’ …I always got made fun of, beat up,” Durbin recently told Idol viewers, adding that when he sings, “it all just goes away, like I don’t have a care in the world.”

Dan Ackroyd is another celebrity who has both conditions, which frequently occur together and are three to four times more likely to strike males than females. The two disorders are thought to have genetic component, and researchers recently discovered a gene for a neurological syndrome that includes autistic behaviors. If inherited factors trigger AS and TS, that could be a concern for Durbin, who has a toddler son with his fiancée, Heidi.

Although involuntary swearing (coprolalia) is the best-known symptom of Tourette syndrome, only a small minority of people with TS have this problem. The condition, which affects about one in 100 Americans, is a neurological disorder that triggers involuntary movements and vocal outbursts called tics. These symptoms often start between ages 7 and 10 and tend to be worst during the teen years.On Idol, Durbin has shown such characteristic symptoms as blinking and facial twitches. Another Idol contestant reportedly affected by TS is Arkansas’ Dave Pittman who appeared on season 9.

Other TS symptoms include grimacing, head or shoulder jerking, repetitive throat clearing, hopping, grunting, and barking. About 200,000 Americans have a severe form of TS that may spark self-injury, such as people punching themselves in the face, uttering swear words, and compulsively repeating the words and phrases of others. Some people with TS can learn to camouflage their tics. Most don’t need medication, but drugs may be prescribed if the tics are severe enough to interfere with daily activities.

Asperger syndrome is a developmental disorder that can cause repetitive rituals, obsessions, oddities of speech, such as talking in a monotone, shouting or taking figures of speech literally, eccentric behavior and inappropriate facial expressions, trouble connecting with peers, and clumsy movements. It affects about one in 5,000 Americans and is associated with normal intelligence. There is no single treatment, but kids with Asperger syndrome can benefit from social skills training, cognitive behaviorial therapy, medication for co-existing problems like depression or anxiety, speech therapy and support from parents and teachers. Many adults with AS hold jobs, though Durbin is unemployed and prior to being on the show, was so broke that at times, he and his fiancée couldn’t afford diapers for their toddler.

“The thing about Asperger’s is that it’s about social awkwardness and not being able to contain yourself and being overwhelmed…” Durbin said on Idol. He is one of the most emotional contestants, known for crying easily. Still, despite his disabilities, he has connected so well with judges Randy Jackson, Jennifer Lopez, and Steven Tyler that they deem him one of the competition’s frontrunners. “I have Tourette’s and Asperger’s, but Tourette’s and Asperger’s don’t have me,” he declared in an Idol interview. “I’m doing what I can to suppress it. It’s not who I am.”