I just wanted to share a little picture with you all… I think nothing shows the GROWTH of Brooklyn both in size and persona more.
p.s…. photo shared (as always) with Brooklyn’s approval
I didn’t start this blog to show off my amazing “prose.” I started this blog to do something I have never been really good at, no matter how many people believe the contrary, to get out all my locked up feelings inside.
I have realized lately that I lock way to many things up inside. I shut my mouth because, as my mother taught me, if i don’t have something nice to say it is best to say nothing at all. I no longer believe that to be true.
As of late, some people have commented on my “face.” I am being asked, “What is wrong?” “Are you okay?” “You look like you have something on your mind.” Truth of the matter, there are too many things to list. I have too many things on my mind that have lived locked up for far too long. Things, I’ve thought but never said. Things I’ve worried and wondered about with no one to share the thoughts with. For me, I have yet to find that ONE person who I can share my inner most self with. I thought I had found him once, but alas, it was not meant to be, apparently. So, until I do, I find myself full, full of things not worthy of public consumption. However, this blog, it has given me a way to let out a little steam so the pressure cooker doesn’t explode.
These past two weeks I have been VERY quite on this blog. There was simply to much happening TOOOOOOO fast for me to process. I sit here now, with some time to kill and feeling the cap giggling, I have to get some steam out.
While contemplating if it is time to push my little man further, harder and cut back his ABA hours…. life took it upon itself to decide for me. THAT PISSES ME OFF! My insurance has now told me that they will not cover ANY hours for my son to have an aide in Summer Camp. They tell me this the day before camp starts. Apparently, insurance doesn’t cover summer camp. Ironically in my previous post about Steve’s travels, as luck, LUCK-DUMB-LUCK has struck again. As it turns out, the insurance company was never supposed to be approving services at summer camp. Lets forget for a moment, that when they STARTED services he was in summer camp, melting down several times a day with ZERO impulse control. They turned me onto the agency we used for ABA who turned around and got us an interventionist within a few days. Yet again, irony plays a part. The woman in charge of approving insurance claims for service went to college with the Director of our ABA service provider. Win-Win for everyone.
I know, that had too many “inside baseball” references. Just know the bottom line is, Steve, he has gotten intensive ABA services, 40 hours a week, all summer for the past 2 summers – a fact that I believe is WHY Steve is as advanced as he is. And now…. Steve gets NOTHING. Just like that NOTHING. I am beyond frustrated at the moment and this blog helps me vent that frustration.
The other side to this coin… I need to presume competence. My son has worked his butt off on correcting bad behaviors. He has learned so many things. He’s even starting to make new friends. While I’m frustrated at the way it was handled, I have to believe, that all the hard work once again, is leading to this… this moment when we see if everything we’ve worked on, STICKS.
I don’t even know where to start with the emotions that have been flowing through me these past two weeks. I cried when I heard the school bell one morning. I woke up crying at 2am with flashes of all the events of the past six years. She starts to sing, I start to cry. The faucet turns on and I have no way of turning it off. I never know when it is going to hit, I never know when it will stop. I’ve been told, “stop crying, you look like am idiot.” “Get over it, not like you can stop her from growing up.” “Wow, you’re crazy overly emotional aren’t you?” Those are just a few things that have been said to me personally. I can only imagine the things that have been said behind my back. I will say this…. you know what people… YES… about this…at this moment… I really AM, I’m proud as SHIT about it. Proud I let my emotions out. Proud that I am showing my daughter that it is okay to be true to yourself. When you FEEL something, allow yourself to FEEL IT. To those who want to judge my sentimentality, maybe you never thought that my daughter is the first blood relative I’ve ever had in my life. Maybe you never thought that for YEARS, I was told she would never exist. That I was never going to be able to have a child. To those who want to judge my sentimentality maybe never thought that my daughter has struggled with so much over these past 6 years. Being the big sister of a special needs brother is NOT easy. You don’t know, unless you’ve been one. He used to beat the crap out of her, hourly, daily. He got ALL the attention because it was necessary to protect him and all those around him, including her. She struggled with her reading, her math, her science, her attention, her focus, her confidence, her emotions. She tried to be the stoic big sister/ mama to her baby brother as her parents went through a divorce that wasn’t always easy despite our best efforts. “Come here Zac, you can sleep in my bed tonight,” I heard her say. She’s struggled through holding in all her emotions to the point of making her self sick and being admitted into the hospital for 3 days with sever stomach pains, enduring test after test. She’s struggled with feeling like the dumbest kid not in her class, in her entire school. Thanks to some amazing teachers at this elementary school we are about to leave, she got help she needed. She got smaller class size for her hardest courses. She got accommodations for the tests that send her into a tailspin over stress. She got support. She got diagnosed. She got medication, she got help. She and I worked very hard on all of this to the point that every single day we had check in meetings, we went over check lists, we went over game plans for the day, and the next. We went over homework every single day. How, where, when would she have time to do what work and still be able to do the things she loves like Tech Crew and gymnastics. She worked her ARSE off. She worked so hard she overcame those terrible feelings of inadequacy and she earned a scholastic achievement award for Enormous Effort. Each project came back with better and better grades. Even some 100%’s on some of the HARDEST projects I can remember ever seeing. Each report card this year, her final year at this school have been better than the last. By FAR the best report cards she has ever gotten. So… go ahead, those who must judge, tell me again that I’m being overly sentimental at the accomplishments my daughter has made in her SIX YEARS at this school! No, my child DIDN’T get a Presidential Seal award. By my God did she win the award of my heart.
My tears are not of sadness. My tears are of immense PRIDE and JOY. Brooklyn has overcome so very much in her short little time span on Earth. Now… I am not going to say that a few of the tears are not coming from fear. Fear that she will have the same experiences I had in middle school. Fear that some boy is going to break her heart into 800 million more pieces than the first one did this year. Fear that I am not going to get as much Brooklyn-Time as I have in the past. Some of the tears are most definitely coming from excitement for her future. I have seen what my daughter can do when she puts her mind to something and I am telling you, the sky is the limit for this girl. My Girl. And I can not WAIT to see what she does next!!!!
This blog is helping me feel. I don’t think many people actually read it… but that is okay. This blog is really for ME. Thank you though, to anyone who does, read my ramblings on a regular basis. May you find something in here that can help you too.
Love and understanding to the world. Maybe if we can all just judge a little less, it will all be worth it in the end.
image is of a heart. It truly is ALL about LOVE.
You know I follow a lot of mommy blogs. Many of them, are mom’s of special needs children. Some of which have kids like mine, some do not. All are special in many ways. I have learned some of the most AMAZING things from these women. One of the things that has meant the most to me is the idea, term, belief, concept of PRESUMED COMPETENCE especially amongst autistic children.One Mom’s blog (rhemashope.wordpress.com) quoted the following in a recent post:
Douglas Bilken describes presuming competence as a framework that says “…approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute. Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”
Today… I am presuming competence. Apparently I’ve been doing this more than I ever knew. Today I am presuming that Steve will be willing, able, heard and wanting to contribute not to mention participate with his peers in his after school daycare program. Steve no longer has an aide in this environment. Steve I believe is more than competent at handling himself and his emotions, his impulses, and his behaviors. THIS … this is what we’ve been waiting for… THIS is what all the hard work for the past several years has been about. THIS … THIS moment is HERE…. Its all been leading up to this.
I am presuming competence. He will be just fine.
Those who follow our adventure know Brooklyn is in the Fifth grade which means a lot of “promotion” activities.
Many of you who follow our adventure also know I got suckered into helping out with this parent sponsored dance party.
You also know if you follow along, it’s been a nightmare thanks to a few douchebag parents.
Well, last night was the dance and here is what I shall now say publicly… It was worth every moment of aggravation, stress, pain. When the entire class did the “cha-cha slide!” When the kids let out screams to their favorite songs, the way they devoured the pizza when it arrived. The smiles all night on their faces was simply priceless. The photo booth was awesome. And our DJ…. Wow! For being a 13 year old kid, he was amazing. I will be hiring him for any and every party I have from now on!!!
King douchebag, wasn’t in love with some song choices (oh yes, did you think King Douchebag wasn’t going to demand to be a pole in the middle of the room and scare the children with his glares and disapproving body language – not to mention his offensive to the senses costume— I mean—clothing choice?!?!?) however, the funniest part to this inappropriate parent here (yeah, that’s me!) was his disapproval was met by EVERY kid singing every lyric of the disapproved of song. A song mind you, that is played on the radio and did not have one swear word in it! I loved it!
So, my take away was this…. You gotta stand up to the bullies of the world. You can not let their rediculousness ruin it for the masses.
Oh… And one more thing…. Dear LORD parents of the world, know the names of the people you want you child to go home with at the end of the event. Seriously, “My 11 yr old daughter is going home with the guy outside ” doesn’t really work, for ANYONE…….EVER.
Photo is of the beautiful Brooklyn all made up for the dance, for real makeup, a new dress and jacket her father bought her that morning, and what you can’t see are the matching all white converse that everything was based around.
Ask for what you want.
I hear these words all the time from my teacher friends, from other parents navigating the IEP landscape. If you don’t ask, they will never give it.
How do you ask for something you know nothing about? For example, how do you know you can ask that your child be allowed to write an email home every day as part of his daily communication log with the school.
How do you ask for something when your voice has been silenced by so many for so long?
So here is my latest takeaway from my reading and research:
I ask that every parent stop every once in a while and THINK about what is the best interest for your child. Some think they think, but they really don’t. Think about it from your child’s perspective. Not your own ego filled “I’m going to win” space.
I ask that we all realize just because that’s the way it has always been done, that that doesn’t mean it can’t be done differently the next time.
I ask that children be spoken to, not just AT, especially with regards to feeling, expressing those feelings, and their experiences.
I ask the universe to help each and every one of us to be KIND to one another. I do not know where kindness and compassion have gone, but I do ask that they hurry back.
I ask the God continue to guide me in making a bright future for my kids.
I ask that you realize, as I suddenly did today, that the sky is the limit, so why not ask?
Sadly, none of this is limited to IEP’s….. It’s life, ask.
Image is of the sky. The sky and it’s never ending possibilities await.
I get that everyone has a different parenting style.
I get that most people, admittedly, or not, judge other people’s parenting style.
What I do NOT get is how someone can tell someone else how to parent, without walking in the other persons shoes.
Let’s take a parent sponsored FIFTH grade dance party for example. All parents are invited to participate in the planning and throwing of a congratulatory celebration for the class. A donated space has been offered to the class for the event. Every child who wanted to attend was asked to donate $10 to the “cause” to get a DJ, photo booth, food and decorations. The parents who are donating their time and energy to put on this thing are doing it for the kids. It’s been a tradition for years, some would like to see it continue.
But then, there are the parents who want to tell the “committee” how to do it. These parents write several long winded emails outlining all of their expectations for the event. Expectations that range from questions about serving alcohol to 10 and 11 year olds to expecting a dancing style that would not embarrass their grandmothers (yes, those words were used).
When these “concerned” parents with all the opinions are offered a position to chaperone the event to ensure them a position of caring for their own child’s behavior and that of others since CLEARLY we committe members and chaperones have raised nothing but VILE children, they say no. However, they have no issue in writing MORE e-mails expressing specific duties for each chaperone to agree to.
So, let me get this straight, you are not offering any extra donation money, none of your time hunting down the best deals on decorations, food, or entertainment. You have not offered to help with set up, take down or creating signs or goodie bags. However, you want to tell the committee how to run the event item number by item number and still not even chaperone yourself.
I have 3 words for you…. GO SCREW YOURSELF!
Honestly, just go screw yourself. There are several of you that I have known for MANY years now that I will NEVER be able to respect again. It has really been an eye opening experience. How dare you feel that you have to tell me what my job is while chaperoning. How dare you, oh darling person who personally knows every person on the committee, tell us we don’t know how to parent, protect, and preserve the well being of the children.
Let me guess, you are going to tell me how to to throw my next birthday party now too.
I mean I always knew there were “these” people out there……But WOW. Just amazed, saddened, and so very disappointed.
So, a friend put me in touch with one of her friends whose little guy was recently diagnosed with Autism. Great! I love sharing the information I’ve learned. Happy to help. Happy to teach. Happy to meet new people.
Only problem… more than once, ignorance has reared its ugly head on this person’s social networking page and it has given me very sour stomach issues.
Today was one of these days…. today someone said to this woman.. Hey look at this website I found while poking around the aforementioned social networking site.
I was hoping to attach the logo that offended me so, but it was built as such that white on white can’t be seen so let me tell you what it says:
Talk About CURING Autism
I was immediately PISSED OFF.
I was immediately sick to my stomach.
I couldn’t decide if I would share the site her or not because it goes against EVERY fiber of my being – but then I figured why not talk about WHY this angers me so much.
Well for starters… There is no CURE for autism. Period. PERIOD.
My son has had INCREDIBLE strides in his ability to manage his autism and his ADHD but he is not CURED by any stretch of ANY imagination. Autism is neurological disorder. A disorder is not anything that can be cured. It is something that will live on forever and how you learn to handle the level in which the disorder effects YOU is called MANAGEMENT. It is not called a CURE.
Neuromusculatory Disorder. Could you ever, would you EVER tell a person with diseases of the peripheral nerves that cause weakness, sensory loss and pain in the extremities that they are cured if the pain wasn’t so bad, today?
A child with Aerodigestive Disorder. This disorder is in children who have complex upper airway, pulmonary, upper gastrointestinal (GI) tract, sleep and feeding disorders. Care is coordinated across a range of pediatric specialties and subspecialties, including pulmonology, otorhinolaryngology, gastroenterology, neurology and sleep medicine. A dedicated pediatrician serves as medical home and interacts with a child’s primary care provider; nurse practitioners work closely with physicians and families to ensure coordinated care.
Disorders that require coordinated care.. can you imagine… Could you ever, would you EVER tell them they are cured if you found a way with the coordinated care to manage the situation?
OF COURSE NOT…. DUH.
People of the world.. KNOCK IT OFF… Autism can not be CURED. Shoot for many… even managing it is an incapable act.
I would LOVE to see someone in my lifetime figure out what causes it and oh I dunno…. STOP THAT…. but wanna know what…. My money is on the kid with Autism… I bet they’ll be the one to do it… I just pray I am around long enough to see it.
However… In the meantime.. there are people out there like the woman who founded T.A.C.A who by her own admission says THIS on her site – and I QUOTE –
Where is my son Jeff now? He is a teenager at a typical high school learning same curriculum as his typical peers with a great grade point average. He still has a part-time aide. He talks, makes jokes, gives out hugs, plays on the high school golf team, socializes with typical friends, and is an active member of the society with a bright future. He also happens to be the sweetest, kindest person I know and is practically always smiling. That is a far cry from his early diagnosis and the initial prognosis for his future.
TACA’s goal is to provide education, support, and information to parents to help their children diagnosed with autism be the very best they can be, with the hope of recovery.
He still has a part-time aide (coordinated care) and yet wants to give hope for RECOVERY (recovery means there was a cure, a cure means he no longer needs coordinated care, the disorder is all gone never to be heard of again).
Well my darling. Ms. Lisa Ackerman, founder or TACA…. there is no recovery…because there is no CURE. There are however, high levels of management, especially in the higher functioning autism community, and I commend both you and your son on yours. Honestly, I do. I know you’ve worked your ASSES OFF at it, to get to a life in which you have become accustomed to in your own home. To where maybe you can take a shower on your own and not have to worry about your teen-aged son walking out the door and being hit by a car on your busy street every moment of the day. KUDOS TO YOU!!! That however, is only in YOUR OWN HOME. As the saying goes, when you’ve met one kid with autism, you’ve met ONE kid with autism.
I on the other hand will not claim to have a cure because my son is doing well. I will pray for more knowledge, understanding, help and acceptance amongst the neurotypical community. For those of us with high functioning children, I can see how some may “classify” the huge strides and gains as a cure…. call it semantics, call it whatever you will. But for all the families I have met, talked to, seen, and just simply know of, for all the families whose lives will never be the way they envisioned them when finding out they were having a child, I can not stand by and not be angry for saying you have a CURE for autism.
Those are my feelings about it – and like them or not, I am entitled to them.
image is pretty self explanatory