Hiatus update

I’ve been on hiatus since last summer for a number of reasons:

  1. Putting myself as a priority.  I’ve been closeting my mental health and I can’t do it anymore.  After 3 anxiety attacks and trying to juggle PT (quite demanding) work, family and Mama life.  It was hard and it has taken a toll on me.  Now, this was a something I didn’t know I was battling until my anxiety attacks forced me to take a step back.  I was drowning in trying to get back financially on my feet, while providing for my son and my family and I. JUST. COULD. NOT.  Now if anyone personally knew me, I have worked since I was a teenager and I handle my finances well as a young person that I didn’t have to ask my parents for my “little” things because my job covered it.  I took out loans for school and paid them off but even then I should’ve realized that I always take on more than I can chew.  Thus, me being in college for what felt like a decade.  I was taught to be independent and not have anyone worry about you or need anyone to take care of you. Well, I forgot to take care of me.  And no, I haven’t found a therapist.
  2. With my mom stress with my son’s 2 added diagnoses, you would think I can handle it.  NOPE.  As much as I knew that this was just something that was going to happen, I was in denial.  I saw the signs and often chalked it up to the comorbidness of his other diagnoses, we just needed the official confirmation from the doctors.  I guess I will never get used to it.  And I hate to have to think of the diagnosis over the child, which I have been guilty of here and there. I always say you can give him diagnoses A through Z but deep down, his APD and SPD is in the fore fronts and I CANNOT get a handle on it.
  3. Working on bettering me to be a better Mom.  I’ve been registering for webinars and attending conferences while I can.  I try to help out others in their advocacy efforts.  Although it seems counter to me putting myself first, I have to be constantly learning in order to keep my head in the game.  I have successfully, put the advocacy hat off for MONTHS (it is my mental cycle when I am done with the annual IEP) and I only put it on very very part time for others.  Can’t burn the candle on both ends.
  4. If you’re wondering what else he was diagnosed with.  It is in my history but will state it here: deaf, autism, ADHD, Sensory Processing Disorder (SPD) and Auditory Processing Disorder (APD).  NOWWWW, before you say well most of these are traits of Autism.  Yes, if you done your due diligence of research, we know that out of the 4 – they all are comorbidities with in the spectrum.  [Tell that to his IEP team because it is like I speak in tongues when I say this stuff.] All roads lead to the spectrum.
  5. APD:  We knew that processing auditorily can be and is a challenge for him just simply because he was born deaf and had no residual hearing in utero and after birth for the first year of his life.  Now implants are NOT like glasses, you can’t hear and understand what you’re hearing.  The hard work is with speech therapy.  Even visual impairments have vision therapy varying on the severity of your vision.  It is becoming more clear as he is getting older that he only picks up part of instruction, conversation, and anything that requires him actively hearing, that he doesn’t register it all and if he does, he doesn’t know what to do with that information.  There will be times that HE DOES get it and then there will be frustrating [for myself and others because we THINK he hears and comprehends], that he doesn’t or he needs time to process and MOST people will NOT take the time to let him process it.  And it is minutes later before I even realize that I need to break it down more, fewer words and simpler text.  By that time, MOST of the audience has checked out or moved on.  This makes him frustrated and gives him anxiety.  And don’t get me wrong.  He is a good listener when all the good stuff and supports have magically aligned to provide that great listening environment, he thrives SO MUCH. Again, i have guilt of even talking about his deficits but i know it is a necessary evil for me to decipher thought and HIM.
  6. SPD:  this vicious thing has been taunting us for up to 2 years now.  I can often times anticipate what will sensorily set him off so I either prep him, give him a pep talk or just get a feel of if he’s willing to do it or not or we just completely bail.  I’m the pusher, Dad is the enabler. I’m not the type that will allow him to hold himself back.  For that I may be looked at like the one that pushes him too much.  [Call me if you want to fight me about how i handle my son. ;)] but I am a firm believer of getting him out of his comfort zone and I will gladly do it so that I can prepare him better for his world and its unpredictability.   His self stimming has come back in a form of auditory stimming, self injurious stimming (especially when frustrated), dialogue stemming ( where he rehearses movie scenes in his head) or replay swimming (where he thinks of random funny or not funny but always in the past events in his head out of nowhere and wants to vividly discuss every single detail like I have a steel trap of a memory, which I VERY MUCH DO NOT) and it frustrates the both of us because I so want to relate and discuss with him so he can get a better understanding of what he interpreted in his head vs what actually happened, but we both fall short.  He needs to move and move often and this time it is in the form of cartwheeling.  Not only has he hurt himself doing it, he has hurt others.  I get him to do yoga and exercise with me, walks.  I have a box of sensory goodies for sensory input.   I have even seen an OT that tried to help us and a speech therapist that recommended social skills class.  Speaking of social skills
  7. Social skills: has anyone have NO improvement in that department from their kids?? He has very little improvement.  He is NOW talking to others that talk to him rather than pretend they don’t exist.  ( WONDERFUL NEWS!!) If he isn’t comfortable and feels like everyone in the room is looking at him, he reacts and it isn’t pretty.  I can anticipate how he will react when his entire body tenses up and he looks around.  He’s got a look I can’t personally put into words but I know when I see it, I have to talk him off “the ledge” sort of speak.  He is having conversations with kids but he’s rigid.  It must be what HE wants to talk about and when someone else talks about something he has NO interest in, he says, “Yea…..can i talk about what I want to now?” (the blunt open speaker in me laughs REAL hard, but the Mama in me that desperately want him to make and keep friends is heartbroken)  We have tried it all and we will keep trying.

It hasn’t been easy.  I’ve been appealing my life away and that adds to the stress.  I am trying to find healthier avenues of my stress through exercise, yoga, meditation (so hard when you’ve got to attend to him) Despite him being in school the same time as the kids, I have to run the errands that would take me HOURS to complete if my boy were with me. I’ve grown accustomed to carving out the to-do list while he’s at school but by the time it is time to pick him up, there is no more ME time.  I also try to put aside ONE day to do what I want to do for ME.  Whether it is shopping, walking, manicure, I try to do it once a month but I was trying for every other week – it ain’t working out!!!

The reason why 5 – 7 are a challenge for me is that so much of what occurs from the disabilities I have to decipher within the first 10 seconds which disability is at the fore front, how can I help him through this, and have 5 contingency plans ready for execution if my first guess was wrong.  Most times, especially in the past few years, my patience got the best of me and I felt like I’ve been failing as a Mama.  I am hardest on myself when I see my son is struggling.

I know, I know, it isn’t me but when you see your typical child cry and struggle. That is me times infinity when I see him having a hard time. When he can’t articulate himself, When something so mundane and easy is so very hard for him and he had it consecutively 10 times before this. When he sees that it is easy for others but EXTREMELY hard for him and then he is hard on himself AND he KNOWS that he is different and he calls himself stupid, when he hits his head out of frustration. [yes, yes i know many run on sentences but that’s how my brain operates lately.]

I felt I lost myself in the process of being the Mama and I realized THIS was one of my avenues of stress relief.  Being able to jot down my thoughts and feelings, frustrations and personal feelings.  Judgment or no judgment, I no longer care.  How can I tell my son to never be ashamed of who he is, when I cannot admit to my own? I’m having anxiety even putting my vulnerableness out there but for the sake of my son, yet again, I’m gonna try to do it all again.  Anxiety needs several posts that I won’t even get into now.  Until then…Hope people are still reading.  I wonder if anyone would even watch….nah, not ready…

 

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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!

Sincerely,

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: 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!