December 2, 2010

My son is hospitalized and I am enraged at the level of care!

"Community-Based Acute Treatment (CBAT) is a hospital-diversion program specifically designed to provide short-term emergency stabilization support to children between the ages of three and ten years old who are actively in severe emotional and behavioral crisis."

I need to vent. As most of you know my son is in CBAT, he's 5, it's been 2 weeks yesterday. This is his 2nd hosp., so this time he is acting bottled up and not expressing his "self" as much, although did in the beginning. As his mom -I- know he is fearful because of what he saw last time and this time he is afraid he won't come home. Hence the initial outbursts and "critical reports" and then now, things are quieter.

Rather than see he was manic and aggressive for the first week, and then calmer the second week (mind you there is a HIGHLY volatile child in his unit with him on week 2, which is causing him to be in fear all the time.)

Now orig they thought of him as SO active he needed meds, and since the other child came into the house, and dominates everything and everyone, my son is now quieter (fearful). I think when a child sees repeatedly other children tackled, chased down, pinned to the ground, restrained, SCREAMING crying that it's natural they would be afraid (he's 5 remember). Right?

They are telling me he is just adjusting to the "structure" and with that structure at home he will be fine. Really? What artificial world do you live in? Of course we know how to structure and keep our kids safe, but the real world isn't like that CBAT structure, no matter how we try, cannot be duplicated at home, it's impossible. Ok sure send me 4 staff, a glass time out room and a facility of help. *sighs* I am SO sick of the fight! And also, with the energy poured into this volatile child, the other 7 kids are not watched as closely, so my son is eating pennies, kicking windows, falling in the shower, tearing up his room and they have not noticed! Can you believe this?

WHAT the hell has our medical world turned into? No wait, the staff noticed he tore his room apart because while I was there they cleaned his room! Yes that's right folks, in the 5 mins I was there they took his destroyed room and cleaned it and made the bed. For what purpose? Part of his stay is to learn self help and they do their rooms daily. What the heck is going on while I am not there if these are just a few things I do see? Exasperated!

Document everything, take notes, take names, take pictures! Visit often and WATCH staff and what they do/say. My son is in "best of state" and this is just a sampling of what I have put up with there. I have collected his "therapy art work", taken pictures of his artwork on the walls, and I should have taken a picture of his torn up room because when I walked by 5 mins later, the evidence was gone. Do I sound paranoid? Trust me, I am a very sane and educated woman who is being made to believe less is going on than there really is.

October 24, 2010

The school files (2) 51A's (abuse & neglect) against me (DCF Dept of Children & Families formerly DSS Dept of Social Services)

Seems that many parents are being blamed for their child's issues when they do "well" in school, but not in the community. Just because the proper environment, with the right supports are in place and positive results are achieved - does NOT mean the illness, issues etc do not exist for the child.

In my case, the school has blamed me (personally and blatantly at meetings, documented it in FBA (Functional Behavior) reports, and in front of my advocates at IEP meetings) They have even gone so far as filing (2)51A's with DCF (Dept of Children and Families, formerly DSS) accusing me "being the one with the mental illness, fabricating my son's issues and causing his hospitalization". All of which is untrue and unsupported.

We have tons, and always have had wraparound supports, services, therapies etc and I am the parent who advocates for everything and has from literally 5 months old.

We have had a clinical team following him since birth documenting everything and yet the school "disagrees with the Doctors and stands firm he has no diagnoses" LOL!

I spoke with the Federation of Children with Special Needs about this and unfortunately they hear this complaint all the time from parents. This is an outrage! The school is on some sort of a which hunt and they are in for more than they bargained for.

When the dust settles and the file is closed unsupported (as they already know it will be and have informed me of such) you better believe that I will march right to the Newspapers, TV shows, Politicians - ANYONE who will listen. I refuse to be made out to be a bad parent simply because of budget cuts!

Is anyone else dealing with this parent blame?

October 19, 2010

Does your child do well in school, but not in the community?

Can you spare a few minutes to answer 5 questions?

Your feedback is important! We need to band together against this lack in the school system, which in turns shifts blame onto us.

August 25, 2010

a plea for a girl who has just a few years left to live - and is just 20

Rebecca is 20 - Lafora's Disease is VERY rare takes children in their early to mid 20's and there is no cure. She is a high school friend's relative who was just diagnosed with this disease. Him and his family are all stunned to find this out. We think our life is so difficult, we look at our family and struggle--but there are worse situations and today I am thanking God my son has just mental illness and not a disease that will take him in a few years.

Lafora Disease website featuring Becky

Becky's Facebook page wanting to find a cure!/pages/Beckys-Dream-Cure-for-Lafora-Disease/142258165813053?ref=mf

May 5, 2010

I'm sorry, what?

While I understand Strength Based Therapy I do not need to take my son to a "tea party" each week. I need the Therapist to address the messy stuff. She told me that my hostile approach to my son yields no results. Since when did Parental Authority become viewed as hostility? (I'm sorry, what?) Does she need to be shown the true definition of hostile?

April 1, 2010

A poem written by Pauline Branton about her special daughter Megan

I simply had to share this, posted by Pauline Branton

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share
And so He sent you to us,
And much to our surprise,
You haven't been a challenge
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart
Far outweigh your special needs
And melt the coldest
... heart.
We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us
Is more than you can know
A precious gift from Heaven
A treasure from above
A child who's taught us many things,
But most of all- "Real Love"

March 22, 2010

Dakota-my son's dog, eats choc chip cookies! Oh no

As Zachary is on the couch trying to dress himself (yes he is 5 and still cannot manage it alone on most days) he is praying to God.... "Lord please help my dog not be so sick"

Dakota is a rescued dog and a scrounger due to that. My fault, left chocolate chip cookies in a ziplock bag WAY up on the counter. Out of her reach, always have food there, but today she managed somehow to get to it.

For those of you who didn't read the other post, I am owner training her to be a Service Dog for my son. There are links below to grants for equipment and info on how-to do this.

We woke up with no Dakota on his side of the bed and I knew something was wrong. Downstairs she was pacing and panting. I spot the paper plate that had the chocolate chip cookies and it's zip-lock bag on the floor. I send her outside and give her a huge bowl of water and jump online. I find an old website which suggested Vet and Ipecac, & keeping an emergency kit for these situations. I knew this was old info and I pack my son who is panicking and dog into the car. I send Zachary off to school crying for his dog and call the Vet on my way there. Turns out chocolate in Toll House pre-made batter is not as poisonous and due to her size she probably will just be sick. Of course they suggest bringing her in and I start my speel. "She is a Service Dog for my special needs child, if this is routine to tell me what you already told me, I seriously cannot afford it. I cannot take from the emergency pool for a typical well visit." She understood and told me watch her then for worsening symptoms, it's just making her sick. She also told me that if she already was vomiting then no need to induce with more meds. She said had I caught her eating them, then give the inducer. Otherwise she is doing well on her own with spitting it up. What a relief. How would I explain to my son that his dog was not going to....... oh I just am praising God right now.

I just found this one, in the pink box is the correct answer regarding what types of chocolate per body weight for toxicity.

March 15, 2010

It's exhausting trying to show proof to professionals

We've just had THE worst week and I don't know if it is because he didn't feel well or another major mood swing hit. It amazes me how hard it is to tease typical stuff and real issues stuff when it is SO intertwined and messy. Society tells us all of it is "normal" so we chase our tails trying to put a square peg into a round hole. Well I am sick of it. And it is clearly not normal.

I got some good video this week, but as a suggestion--you are better off with the older type video cameras that use small tapes. The new ones, like the one I got, use the memory disk and you cannot pause in between taping. This is a royal pain.

We just spent 30 mins in the therapist office where she does play therapy with him. He is so happy to play! As soon as her and I begin to talk, he acts up and becomes destructive. Typical. Only she decides she doesn't want him being upset and decides to talk about strengths. I don't need to discuss his strengths thank you--I am well aware. What he NEEDS is to work on frustration control and inflexibility! They cater to him to keep him in a good place, so where is the mess! It does exist outside of play-doh and sand boxes you know.

I decided to appease her and talk positive and then scheduled an apt to speak with her alone this Friday. Damned if I am going to let her off the hook this time. I am up to here with society fluffing over the serious issues and pushing it down the line. So what, CHINS steps in next? What do they suggest when he turns 9 and they can't sweep it under the carpet anymore, residential housing? Give me a small break here and address my child's issues NOW, not later.


March 3, 2010

Get proof of your child's issues on video

I decided to video tape episodes at home and in the community, since school and doctors cannot see the volume of disruptions and quirky behaviors. If a child does well in school, it could mean the setting works for them, not that the issues are not present. Don't let the school system cause you to believe it is "bad parenting" just because they receive positive results within a structured setting.

Our therapist agreed this was a good idea too since I am "absorbing" his behaviors and not getting a record of it. This will be taken in the community as well as at home.

Of course they sent the new video camera without the SD memory card so I am waiting on them to replace it. Does nothing go right in our family?

February 26, 2010

ER visit not more than 30 min wait - Floating Boston

Floating Children's in Boston quotes this on their website as well as advertising on the radio.

"We understand the special emotional and physical needs of children. In addition, we believe children shouldn't wait endless hours to see a physician, so most children coming here wait not more than 30 minutes to receive care."

830 Washington Street, Boston

Link below under Websites/Resources

February 24, 2010

Whatever makes his day easier

Whatever makes his day easier is a concept I struggle with every day. How much is too much, when is it spoiling and when is it comforting? How much of my day am I therapist and how much am I parent? For me it comes down to being Co-regulator for my son. Every person is born with a part of their brain (the frontal lobe) which is responsible for the regulation of emotions, behaviors, reactions etc. In Zachary's case, there is a breakdown here. As his mother, I have to act as his frontal lobe and am then considered his "Coregulator". Managing a special child can cause you to lose your own frontal lobe ability (lol) so this can be a difficult task!

I actually read this on the Autism Support Network's website, as a blog from a mother. I thought since I use this statement all the time, I'd snag it. I identify with so much of what the mother was saying, I could almost copy her story here.

My inner dialogue goes something like this: "Oh God, not again. It's been 10 minutes since the last meltdown and we are at the birthday pool party! What could possibly be the problem now?" He has become loud, obnoxious, aggressive and/or dropping to the floor and crying. Keep in mind this is a small sampling of reactions. Rewards and punishments do not work with these children because the brain function associated with Cognitive Functioning (correct response and understanding) is faulty, so typical responses to behavior here do not work and in fact backfire most of the time.

Unfortunately there are triggers which can pop up anywhere, anytime and they are--NOT like what the books and doctors state, but they are unpredictable. The water is too cold, it's too warm, water splashed on his face. Or it could be spacial: a child he doesn't know is too close. The background noise could be filtering improperly on this day and because of his Sensory Integration issues (yes a whole other issue which deals with our nervous system's ability to process incoming stimuli) and this could be the cause of the meltdown. I took the wrong towel, even though it's the one he picked!

So what as a mom do I do? Get frustrated that yet once again he is unable to have a good time and is aggressive and rigid? Or do I become embarrassed by my son's out of control behaviors? Do I feel sad that once again my son is struggling or wisk him away for a quick chat that we will leave if he doesn't stop reacting poorly? Usually all of those things flood forward and many more at the same time and one route needs to be chosen immediately. Society afterall looks at us as if he is behaviorally challenged and it is my bad parenting that causes it.

Although we are all guilty of first reactions, with allot of practice, I am much more aware of my own mood/arousal levels and how I respond to him. So I stand my ground, do not make eye contact with anyone and address my child with the The Nurtured Heart Approach. I guess I would explain it as a life coach which a therapeutic heart for the struggling child. You have to submerge yourself in his world and understand how he interprets it, which is quite different than the average person.

Like that other mom's blog.. most of the time I don't know what to expect, what I am doing or how to react but I do know I love my son and he needs more of me than I sometimes have to give. It's a struggle to dig down deep for more when you're empty and exhausted. But I never stop reading, posting, researching, going to seminars and reaching out to others with similar circumstances because knowledge is power. And when you have a special child like Zachary you need a whole plethora of tricks.

These children are gifts no matter how "fancy" they are. I was chosen to be Zachary's mother and can not let him down. I will never stop looking for better ways to make his day easier....

a cheer for suport groups

I have joined some nice support groups through FaceBook.. Parents of: Aspergers, Bipolar, PDD, and Sensory Integration. I also joined The Autism Support Network which has a chat site for Parent's of Aspergers. It's amazing what support from other parents brings to your life. We need to be refilled as our children drain us each day. Find your niche of support.

January 13, 2010

day 2

Just gathering resources I have compiled is time consuming. Luckily I had energy today to do it. Keep checking back as I am adding to the list below.

January 12, 2010

can't access resources

It's clear there are resources out there, but accessing them is a whole other story. I have found as a single parent, that even the support groups and resources available to us, are difficult to attain. Most groups, classes etc (I have found) do not offer childcare, so the single parent with little supports has no way to attend. One of the first things on my agenda is creating a network of parents that can swap off childcare to attend classes, groups, therapies etc. If you are interested in joining this network, please email me with all your info. DMH Directions "Information on your Child"

Creating a blog ~ Jan 12, 2010

I created this blog in 2007... But am just finding my way back now in Jan 2010 - a New Years Resolution.

Being a mom of a special needs child is like being a superhero without the cape or special powers. The ability I have to be this little boy's mom, comes from the Lord. Without God, I would fail at this daunting task. I write this in hopes to raise awareness, lend support and create a network of resources I have found, and will continue to find as I go through this journey. Please feel free to post and ask questions. My life is an open book to those who wish to learn more about a day in the life of a special little boy.