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In all my well intentioned thoughts of what I need to do, this blog was top on the list.  Clearly, it hasn’t worked out the way I intended in the year and a half and looking at the past 3 posts, I’ve made 3 in the past year and a half.  This was and still is therapy for me but because of my own health issues, I had to just stop a lot of things. I know, terrible.

Every year I intend to share my experiences more but I realized much late in my life that I’ve been going through it with some sort of fog or haze, if you will.  Going about life, no feeling, no real solid memories, only glimpses and pieces of a faded memories of my life and only REALLY big pieces that I can remember (LJ’s birth being one of them).  I promised myself I’d be more in my moments and less doing other things and clearly, I’ve done just that.  I have photos to prove it.  These are nearly not enough but plan on posting our plans for summer 2016 in the coming weeks.

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I have unintentionally been focusing on the now, the present, my gifts; being in the moment of things and posting less on social media (although that’s relative ;] and varies on who you ask ). Shhush, quiet. Moving on…

This post was inspired by the craziness of the drama between our deaf community.  If you have no idea and live in a cave with no WiFi, I am talking about AG Bell, Nyle DeMarco, no?? not yet? ok.  Well, you’re in for a treat.  I’ve compiled all (or most ) of the related articles and I’ll give you the low down.  If you are wondering why it matters well then I say you should be well informed, especially if you have a child who is deaf or who has hearing loss.  You will have a village of people and professionals who will give their unsolicited advice throughout the course of your journey.  But the when making decisions on behalf of your child, it is important to know your options.  By options, I mean: to implant or not to implant? to wait and let the child decide? the ramifications if you wait…the pros and cons of a decision you can’t change once it has been made.  And in the world of information and immediate gratification, the likes of google and bing can either help you or hurt you.  You should know your trusted sites, you should read first hand the experiences of what it is or isn’t and the effects.  Granted, you can’t know for sure if the turnouts you read about will occur or not but nonetheless, you’d have to be realistic in thinking short and long term effects of your child.  I think we did an ok job deciding to go total communication for our kid.  I’m not here to push an agenda.  Far be it from me to talk someone into doing something so EXTREMELY personal as to decide his communication needs and wants.  It is a parent’s decision. I will suggest but never force, I give the advice, it’s is up to the receiver to do what they wish.  What I WILL say is once this decision is made, be invested.  You can waver but don’t falter.  We collectively decided to implant and do the total comm. route but I am the lone adult that continued on with my kid.  I don’t blame anyone, no hate, no grudge but more of disappointment and sadness because it is such a benefit to have that added visual communication for him and his face lights up when people sign back to him when he expects to be spoken to.  Yes, he talks, yes, he signs, yes, he tends to talk more than sign but the point is, he is included.  YES, i said it, he is included where he otherwise would miss out on conversations, loud environments, and what have you. But i seriously, digress. Sorry.

I am attaching well known deaf organizations known nationally and within the deaf spectrum of our community who have made official statements regarding the drama in our deaf world.  Nyles DiMarco, who is opening the eyes to those not blessed to be a part of the deaf community, is spreading awareness, much like on April, we go crazy spreading Autism Awareness.  Most or many “old schoolers” believe deafness isn’t a disability, they are not broken and “should not” be fixed.  AGBell is LSL (heavy pro into Listening and Spoken Language )and have been accused of “deaf bashing”, without being terribly harsh but still real and honest.

Being Deaf or deaf means there is a spectrum of various levels of hearing loss, with various people who believe one way or another but at this time, I feel it is important to realize that in between all the public statements and the back and forth, Gallaudet, has reached out to the spectrum of deaf representatives and its organizations to come together for a roundtable of sorts to work together to find a solution.  This is not an easy task but it’s a necessary one.  And not just organizations but audiologists, speech pathologists, therapists, teachers, parents, everyone involved should be part of this discussion.  I am trying NOT to make snap judgments to these organizations but I will say that with deafness brought to the almost forefront, thanks to Nyle DiMarco, it is important to continue to spread awareness not falsities or inaccuracies.

We The Deaf People  ( WTDP’s response to AGBell’s putdown of Nyle DiMarco.)

Response to AGBell’s Meredith Sugar statement: The Buff and Blue

Open Letter to Washington Post: ASL4Deafkids.org

The article that sparked the fire: Washington Post Article

National Association of the Deaf in Support of ASL NAD and other Organizations in support of ASL

This is one of, I’m sure, many that have gone back and forth about signing, not signing but the bottom line is that it is a choice for the families and their parents to make. Give them the information, provide the potential resources so they have backup whichever way they choose. We are pro choice in this but we are the proactive pro choice.  We are providing an enriched language environment to increase his listening and language acquisition (expressive and receptive) no matter the mode to increase the long term communicative outcomes of our child.  We have faltered on the sign language here and there and those were the times we wanted to see if he heard us clearly but even at the age of 8 (and again, every child is different) he still gets confused of what he hears and how he hears it.  This can be a combination of brain and what his CIs interpret and how the brain processes it.  It can also be his autism or he just very well was a typical boy and tuned his darn mama out. Who knows with my forever puzzle…I just know that I am doing my best for my child who has to navigate this already INSANE world.  Can’t we all just get along? I will suggest that AGBell do meet with Gallaudet.  This can be the beginning of a new and uniform type of support for our deaf community and can help bridge the divide.

I admire Nyle DiMarco for being proud of who he is and speaking out, using his opportunities as a platform to raise awareness.  I envision that for my own child.

I’m just here still to navigate life with my trifecta child. I’ll just get the popcorn ready and watch it like unfold or resolve  (I hope and pray) like daytime soap a reality show.  (Wow, I aged myself).

 

Autism or ADHD

For some time, I have been stuck in this alternate universe two islands called autism and ADHD. According to medical professionals and research, it displayed similar traits and can often times be misdiagnosed therefore leading to treatment variations and school districts approaches to how they go about supporting the two. Then the never ending debate of, “is it autism? is it ADHD? Is it a bit of both?” Even though I know it’s both, this will probably be the question of my son’s lifetime because to the untrained eye, it can look so similar in nature.

My forever battle is with the bane of my forever existence, the school district. And unfortunately that’s all I can say about the situation. I have been going back and forth so much it has made me physically ill. I’ve lost sleep, my appetite, I’m moody, grumpy, lost patience and my cool towards people. I’m so drained at the end of the day, I’ve realized I’m having a glass of wine almost every night to relax my anxiety and nerves. I’ve been to the Dr who prescribed anti anxiety pills and referred me to a therapist. I haven’t been able to pull the trigger on that referral because I have a cardiologist, podiatrist, neurologist, and endocrinologist appointment almost every month.  Even with my thousand reminders, I can barely remember to take my meds, much of which I have chosen not to take other than two… Sigh, but I digress…

I have yet to find a professional who will take me seriously enough to accept he has sensory issues, focus and attention but needs minimal support at school. His behaviors are not that of misbehaving,  but more of a sensory/attention/visual stimulatory satisfaction for him. He yearns for proprioceptive support, he does have attention seeking behaviors but require a trained individual to assist in consultation to help staff with this. You’ll need a BSP (like the one we had in place and you’ll need to follow it)! His attention and focus will significantly change if you provide the support he needs. He’s had it before, it has been tried, it was proven successful but yet no one sees the need for support.

I especially hate when they think they can deny a diagnosis simply because they don’t “see” what I see. How is this even legal?! Never mind the fact that district neurologists have confirmed his autism and ADHD. So,  a person on your payroll has confirmed yet no one supports?? I don’t get it… This fuels me to get into being a lawyer more and more.. Wait, it would require time, money and resources I don’t have…

So, as I continue to fight the good, yet extremely annoying, fight, I take free classes, webinars or anything free related to or about deafness, cochlear implants, autism and ADHD,  as well as any and all parent advocacy seminars and such. I subscribe to researched journal studies like I’m an OT, PT Bcba, and developmental pediatrician and still have to find a way to find and keep some sort of normalcy in our lives. So, when do I have time to myself? Or when will I actually enjoy my night out without having to think in the back of my kind, the thousands of ‘open tabs’ that are left open in my head??? When can I have a decent nights sleep?!  I have come to terms that this is my new normal and I lovingly accept, however, I wonder when can I catch a break??…. Or the next best thing is to hit the lottery so I can hire some bad ass lawyer who can slay the naysayers and I can get the help for my son! Oh, look, I had a normal moment of daydreaming there. Oh, it’s almost 3am….never mind. Squirrel! Zzzzzz…

Lucas-isms 2015

Lucas isms:

L:”Mama, if you change your face, can you change your voice bc I don’t like it.” 😤😧😩😒 (I put make up on)

L:”Can,  I go back in your belly? I want to be small again? ”

[doing a social conflict assignment w L]
M: “So, the one person spilled his drink. What should he say?”

L: he looks at his face and says, “laugh at his face and say sorry.”

M:” So, there are four girls, two pails and two shovels. What can the girls do? ”

L: looks at their faces and says, “laugh at their faces and go buy more.”

M:”… Or share… ”

L:” no, thank you. ”

Today:

L: “I’m learning time. Can I have a watch? Can you work on that?

M: “better get a job…”

L: “You’re older! I can’t do that! You’re 13!”

M:” We’ll, played. I think I’ll buy you a Rolex!

that’s mah boy!

image

Oh how the tables have turned

Here he is, my little hero warrior sidekick being there for me.  It is now mama’s turn for the plethora of doctors appointments, specialists and the related. Don’t worry folks, nothing life threatening but definitely not something I thought I would have to go through at my age. Like life, you gotta work through the hardship, push through and keep focus why you do what you do.

I’ve been really MIA with maintaining the blog. It is only now that I’ve decided to post because I’ve been waiting to be seen by the neurologist for almost 2 hours now.  I am so very extremely thankful that L has been wonderful waking up early and trooping it with me along with the trusty iPad.  Almost every week, if it isn’t me, it is L that has an appointment.  So, we have been busy, busy. In between reality, we have been trying to make the most out of our time.

He is 7 and I can no longer keep him home. He has to keep busy.  I’ve involved him in a lot of Special Olympics happenings…. Basketball, swimming etc.

I’m still having my issues with his school district. I’ll keep it at that. 

I have been more about enjoying what life and what it has to offer so we try to be out and about. 

He’s been having a bit of regression with compliance.  I’m assuming it is part of him getting older but adding autism, makes it much more challenging.  I, as his parent, have been trying to find the point of discipline and punishment vs. What he doesn’t know or understand and requires some legwork on my end.  Not having ABA has been a challenge and I am almost at the point where I news the cavalry to come back and that’s if he qualifies in this state.  A whole other monster of a task but necessary.

I will give a more thorough update. I felt inspired to write since I was waiting and with the ton of doctors visits and me admiring this kid right here I realized how the tables have turned and how much he has been there for me and I am so thankful.

Numb all around

The above feeling I get when I was done taking with the developmental pediatrician and in her professional opinion of spending 2 hours, one hour of which was talking with me was to collectively use the information provided, observed and assessed with ADHD. Now after two previous diagnosis, I thought he’s exhausted the whole medical thing but I am always proven wrong in the world of medical world meets parenthood. It is always something. When she told me at the end of it that she believes him to have ADHD. My reaction was,”ok, what else you got??” Was that typical? Maybe not. But I didn’t feel a thing. Everything she went on to discuss on hoe she made this synopsis was because of his in attention to follow through, failure to comply, loses interest in activity. When she went on to explain, I kind of zoned off (maybe my own ADHD kicking in – personally diagnosed) and thought, this is all the same characteristics in addition to his autistic traits that have categorized him with autism, so why are we not discussing how eerily similar it is !?! More importantly, how come I cannot get the school district to take his other diagnosis seriously and provide the adequate results.

I’ve been battling with the district for well over a year now. Trying to equally support all his needs. The obvious they are supporting is his deafness and cochlear implants because let’s be frank, they cannot deny THAT. He wears it on his ears. But the autism. Because they don’t want to recognize or see that any typical non autism professional in the field can see that he doesn’t seem to exhibit traits, they’d prefer not to provide service. Even though I have all the medical diagnosis, previous behavioral support plan, hours and hours of therapy. They can consider that inadmissible because and this is how I feel, just because.

I know I’m no the only one fighting this multiple disability battle. Especially when it comes to “hidden disabilities” that can easily be masked by other things. So their philosophy is that they only treat it when it gets worse. Can you believe that. That if we took that same philosophy in the medical field. What happened to preventative care. Aren’t we even rewarded through insurances and such to take a proactive approach to a healthier life. Yet, because I became heavily involved in my sons early intervention and first few years of his life that now he is getting punished for doing well with therapy. Now this is where I am numb, again.

As a parent, not to be treated like an equal part of the team. Not being privy to information they very well know and conveniently leave out. Aren’t privy to early childhood education, early childhood development, medical terms, how this affects development and the brain, etc. I may not have a degree to be well versed in any of that. But I am well versed in my child and that doesn’t mean a darn thing to them. I’m fighting a very steep and uphill battle. I feel like I’m reaching the top after swimming in the deep ocean and right when you are about to reach the surface and gasp that first breath of air, you have to go right back in and you didn’t take the deep breath you should’ve taken. Numb. I’m being psychologically intimidated by this so called team that I don’t trust, that talks over me, that doesn’t acknowledge my concerns, my knowledge of my child, and I am supposed to trust these people to provide special education services to my child, in their hands. NUMB.

Now I get it, they aren’t the bad guy and they’re doing their job. And I am the most realistic person ever.  And I hate they don’t think the best interests of the child. 

Keeping us busy 

We apologize for the intermission.  We have all been consumed with our daily routines of school, extracurricular activities, family and friend events, deaf events and autism alike.  I am a firm believer of exposing him to things that identify with his uniqueness.  I am the pain in the butt that always tests his limits and flexibility by making him try and do new things.  I refuse to allow this guy to use the excuse of his disability and say he can’t because he can.

As for mom, it can clearly be overwhelming some days (most days) when I am constantly puzzle piecing my guy and trying to find the best off the fly supports to get him through the day.  Most times, I just don’t know what to do, other times I lose my patience, other times, I cry with him.

I haven’t seen a full on meltdown since 2012 – early 2013, when I brought him to a beach in CA a good 2 exits away from our home.  He hated the feel and texture of sand and I refused to let that defeat him and not be able to enjoy the beach.  2 weeks straight I brought him until his tears subsided and he grew the flexibility and tolerance to accept sand is what it is and it wasn’t as bad.

He had one most recently. Over an iPad game that continued to freeze on him.  But what he did was throw the iPad and almost hurt someone which is inexcusable. I took the iPad away as a punishment and told him to cool off in the room and he lost all control. It took over an hour and a lot of hugs and holding him even if he didn’t want them.  It can be a challenge when disciplining a child but especially a child w autism when they don’t know better.  This tantrum was different though.  He feels extreme emotions and this time he was able to tell me that he, “doesn’t like(love) himself”, “wants to be alone”, “feels bad,”.  In a bigger perspective, it is wonderful he is able to express his feelings but his feelings are very strong and made me wonder if that’s how he sees himself in his own eyes.  We cried together and I tried to hold back my tears but I couldn’t. After he settled down for the night. I sat there and cried some more. I can’t do anything to help him feel differently about himself.  I give him all the love and affection despite many rejections and a zero kiss policy that kills me inside everyday.  What am I to do.  The only thing that hasn’t changed is his social pragmatics.  He has and is familiar with his classmates but he has no meaningful conversations, exchange of conversations, etc. in one of his assessments, it states, ‘he seems interested in playing but doesn’t know how or have the vernacular to exchange in a conversation ‘, and by that time a child who seems interested in playing with him has moved on.  That killed me more than any report that confirmed any of his diagnoses.  I was able to push through in life with relationships of family but most importantly, friends and the thought that he would not have friends that get him and are patient and kind, kills me to even fathom.  I refuse this to be him and have a solitary life.  After all, deafness have social communication issues or identity issues because of language barriers and other issues.  Throwing autism and adhd into that trifecta and it is tough.  I refuse that thought and until he knows how to advocate himself, I’ll keep doing it for him and finding ways to help him.

Enjoy the photos of our winter activities as well as a brief description of each.  It was a brutal east coast winter.  It’s almost April and still a bit brisk, we are eagerly anticipating warmer weather and outdoor fun.

autism friendly event in carlstadt, nj

 

Swimming Program in Hoboken, NJ

 

Basketball Program, Hoboken, NJ

 

 

Ice Skating Event in Hackensack, NJ

 

thanks to his godparents for the peanut!

 

spending quality time with family

 

we try to keep him busy but even illness can strike at any time. this winter was brutal

 

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