Summer 2017

It has been a pretty laid back summer so far. Certain things like appointments are less frequent. No ESY because he didn’t “qualify”, no summer camp because they wanted us to sign off on a no liability waiver (especially with his implants). I obviously declined.

This summer our “theme” (because I try to be overachieving and theme what I plan to “work on” during the summer but it seems my list of things to work on turns out to be working on organization (IEP records and prepping for beginning of the year IEP meeting) and sleep. 

L’s apparent theme of the moment is sensory processing disorder and autism. The two interchangeable things that I cannot manage to wrap my head around, especially the sensory part. I have bought medicine balls, ankle weights, stretch bands, sensory toys, even the dreading fidget spinner thing, but yet he spins everything but that. Even when playing with his weight ball of 8 lbs. He thinks he can throw it and I get anxiety he’ll throw it through a wall, our floor, heck, our window and/or break something so I hide it, he finds it, its good times.


Working and Special Needs Parenting

This is the never-ending topic I’m sure most parents with neurodiverse kids have an internal battle about: should i work? Should i go part time? Is it worth it? Can we even manage it? Some parents probably have no choice but to work. The list goes on..

For those that have the plus of being able to be present with your child through it all, wonderful yet on the flip side, exhausting, right ? No mandated breaks, no designated lunch, and the big whammy: no financial gain (but the gain in progress with our kids, worth it all!)

I was up there in a managerial position making a decent amount of money until fate decided that rather than go back to work, I had more important matters to attend to: my son’s deaf needs.

In the beginning, I remember being a zombie and not feeling much other than overwhelming {insert emotion here} or the extreme opposite: I just didn’t feel, I mainly did. You’ve got so many professionals talking to you in a language you know nothing about but are forced to learn. And in time, we got a good rhythm and we began to accept our new normal. Then bam, we were sideswiped by autism. My dual needs child.  Autism may have hit me harder than the deafness but I cannot tell because I was also going through first time motherhood. In retrospect, i may have been postpartum but never diagnosed.

As if I wasn’t already inundated with deafness some days, autism through me for a tailspin. To this day, I have to stay on my toes with Autism. It could be a good day, it could be a fantastic day, the morning was rough but after school was a nightmare! I’m always waiting for the other shoe to fall, never knowing what may happen and assuming I’ve had enough ABA to be a BCBA, something’s you’ve learned just don’t always apply or work in that instant. This is where, I self diagnosed my PTSD .(Am I the only one who self diagnose? 😊)

Now let’s add the questionable, yet do not deny but still reluctant diagnosis of ADHD, and you’ve got my trifecta. At this point, you might as well say he’s got A-Z because I was completely unbiased when the Neurologist threw that at me.

Back to working, I commend and worship the parents that work because I just don’t know how you find anytime to get other things done but when people ask me, I usually reply,” I just do what needs to be done, just like any other parent would…”, and I’m sure I’d get the same response or similar. I  bet you spend a collective 1-2 hours doing something related to our kid’s needs simply because they are the only times offices are open. I wish they were open at midnight (my primetime)

I’m trying to find the balance here. For those that never stopped and went right back, you’re probably not even phased or jaded. I’ve been out of my 9-5 since 2007 and I am more exhausted when I get home but work doesn’t stop when I’m home, it begins. I still have to get correspondence in to teachers or specialists, do paperwork, homework, cook, clean and that doesn’t leave much for ME time.

Sometimes, I wonder if it’s all worth it. If he notices that I’m having an internal battle with having to work or staying home because I see how much the change is affecting him and it breaks my heart because I always want to be there to comfort him and I never miss a thing. I can anticipate his reactions and I can typically prevent any mishaps that NO ONE else can. I’m beginning to lose my special needs trifecta mama touch and I’m beating myself up about it. I couldn’t even remember how to sign a word the other day and already having a crazy day, I just cried because as if I wasn’t already exhausted with being home and caring for him, I’m now working still having to take care of him after a long grueling day.  I am not the go-getter, quick witted, quick thinking, outgoing, etc person I used to be. I’m still in there somewhere but definitely don’t pop up as often. I’m beginning to think it will no longer be worth it when I see regression in my child. Anyone else see this? I have so much anxiety!  If anyone has advises, I am all ears!


Drained and frazzled


Living Life and keeping busy

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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Drama, Drama, Drama in the spectrum of the deaf world

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:

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. ”


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!

We have switched rolls…. Almost


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.