I am a Camel

If you’ve consistently read my blog since inception, you know I’ve got a global village of families that get it. They are my John Tracy Clinic family. [If you are a newly diagnosed family who have children with hearing loss, please take advantage of their resources.]

We keep in touch via Facebook, individually and as a private group I created so we can continue to “stay close” and not feel so isolated in our day to day journey with our kids.

Today, my wonderful fellow JTC Mom posted something so relatable to me, to us as special needs parents that resonated with me. And her post started with the title above.

Yes, we go through things other parents don’t necessarily think about. Our day to day often times are automatic and require no brain power in what our expectations are other than doing our usual routine. But for us parents, that literally think of the little things, the little accomplishments or little struggles like holding a pencil, walking, speaking, as most of that often times occur organically, we are expected to burden the weight of it all and are expected to carry it – much like a camel. A camel that doesn’t carry water, but can go a long period of time without water, carries the fat to survive hot climates.

We are often times in these ‘hot climates’ when everyone around us are in a happy, spring-like non humid spring day. [or insert your picture perfect weather day here]. And the times we have these days, the remainder of the world gets, we often times do not know what to do on these perfect weather days. Because that’s when life usually brings you back to reality. (am I the only one that is super grateful for days like this but feel crazy because we are waiting for the other shoe to drop?).

We go through the motions of life, our expectations, never ending errands to ensure our family’s wheel keeps spinning accordingly. This doesn’t account for the me time, I still don’t do but promised to in January. 🤦🏻‍♀️ (but I will count this as some self reflecting/mindful practice). The regular, mundane, everyday, ‘normal things’ everyone gripes about are and can be overwhelming for any family. But my camel hump, carries the fat that can potentially cripple another. Yet, we are expected to walk this Earth and not be human about the things we deal with. Despite how far my son has come from what the ‘medical professionals’ said:

“We expected him to be further along than where he is a post cochlear implantation…”,

“It is good we are continuing his sign language because there’s a significant delay in his speech still.”,

“We believe there may be some neurological issues that should be addressed,”

“We believe and with your permission, would like to refer him to be assessed for autism,”

“Tests results indicate, sensory issues coupled with….,”

“…comobidness or his autism and ADHD and how they can mirror each other…”

Let’s discuss what teacher professionals say:

“He struggles with…..”,(this times 10!)

“We don’t see behaviors….(But we do!),

The list goes on…. and when you think you’ve heard it all, there’s more professionals saying more things using a gentle, soft tone in their voice. It doesn’t make the words that come out of their mouths any less piercing when it hits our hearts.

We carry A LOT! We have daily things we think about that a typical parent probably wouldn’t think twice about. That’s a blessing for them. But it isn’t a curse for us special needs moms. I have to think multiple times : for myself, for him, for his disabilities x [insert # here]. It isn’t easy but in all the jobs/ roles I ever played in my life, this by far is the most grueling, stressful, busy, anxiety-inducing, financially , taxing exciting, loving, awe-inspiring, extremely rewarding and purposeful in my life. No I don’t get 6 figures nor live a glamorous life that you see on social networks: with the vacations, fancy new cars, etc. There’s no glamour here! But my reward surpasses anything material in this world. I get to actively be a part, learn about my son daily, learn about all his puzzle pieces & advocate for his needs!

The problem with most in our society is that being flexible with situations like mine. I’ve tried for some time to look for any work. I mostly get I’m overqualified. So I’m being punished for looking for “easy” work because I’m trying to also take care of my son’s needs. It’s unfair. When it comes to FT work, I have to weigh my options to of what the pros and cons are if I go back to work FT. Health benefits, the costs of what will be increased if we go back FT, cost of healthcare, copays, extra expenses we typically had covered. We don’t even have a frame of reference because we don’t see those medical expenses and I know for sure, it’s way more than we can handle. We’ve been under for so long, I’m used to it. Sad, right? I can’t be the only family comfortable in this awkward place. But we have so many other pressing worries, we push those in the back of our brains. We have all these worry tabs open and that got lost in the browser we haven’t closed.

What keeps us going is that we are, despite circumstance, blessed beyond measure. Everyone has their stressors in life. We are lucky to have a child (some can’t conceive). We have a roof over our heads (others are homeless). We have food to eat and clothes to wear (others have to steal, beg or panhandle and carry what’s fits in their bags, if they have one). Having our child, changed how I viewed life. I believe if I didn’t have him, my view would remain the same: close-minded, unaware of society’s flaws/issues, unaware of what others go through, therefore, being ignorant to what they go through, completely self-centered and busy with our own lives. I am more patient (although so may argue that), empathetic, kind, and awake to the little things. Hearing my son speak/sign, being able to quickly identify what’s bothering him, being able to take care of him and NOT get others sick, taking him to his appointments, having memories that will last a lifetime. Funny, I’ve got a ton of acquaintances stating they have mom guilt. I’ve got a lot of mom guilt myself but when they express how much they miss out on because of work, I feel lucky to be able to not have that worry. It’s all about perspective and I am grateful for it.

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2018 recaptured

Another year has flown by. Here’s an update on me working on self.

Theme of 2018? Bettering myself to be a better Mom for L and he can be a better version of him. How’d that go, you say?

Well, promising in the beginning. But with my best foot forward. I was consistently going to the gym. Colds prevented me from going and then stopped around March when my grandmother passed. She raised me. She molded me. I was am shattered by her passing. The holidays are really hard this year. The gym dwindled pretty fast to nonexistent. Partially for being so distraught over my grandmother. It picked up again during the summer until about August when we went on vacation. Then back to nonexistent due to a number of things, such is life.

Next year’s goals, gym, mental health, getting off meds. How? Eating better. Making better food choices, consistent exercise (I still haven’t found what I love, love but I was enjoying what I saw at the gym, yet not motivated to go consistently. And moms like us, rarely having time to escape despite all efforts. So, I was thinking of those online, on demand gym classes. That went well for a good month but maybe I have my own ADD about working out and forget to get back to it until I remember to check the scales.🙁 clearly, I fail to be consistent so maybe being more consistent is my goal? 😏 I try to get into a routine but routines and last minute illnesses, scheduling and other things have messed up my schedule.

Goals:

1.Finding more time for me in all possible ways.

2. Taking up a new hobby.

3. Making more time for others.

The last can be so tricky. I mostly have full weeks because I try to get it all done while L is in school. It frees up our weekends to be stress-free and errand-free. On the flip side, I do leave some easy errands for the weekend so that I expose L to various environments. Despite him being labeled “high-functioning” (not sure I like that term), he can get overwhelmed but not in your full-blown-meltdown type of way. He’s a delayed reaction kind of person and often times , especially of late, I fail to see his behavior is a result of what occurred before. So his hyperactivity and impulsivity, lack of listening and under or overwhelm is a result of the sensory influx when we go to the mall, pharmacy or other places I frequent when he’s at school. “When you’ve met one kid with autism,…. “you know the quote.

Now update from L with some photos:

Last year on elementary school (can you read the anxiety!?) Half way through it and it actually started off very promising. He was transitioning well with delay reactions from the school day. But he has a hard time keeping up with the back and forth, follow through, attention and focus. He is still a step behind as he has processing issues, attention issues in addition to his hearing and other things. Despite having an FM, Mini Mic and an interpreter, he has been such a hard worker and is pushing through.

Then all of a sudden things changed and fast. First, his mini mic and FM weren’t syncing to his implants. It took a good two months and me checking in weekly to see when the district audiologist can come see him. Not to mention the the DA having to talk to our Audiologist and it still took two weeks. And is ONLY synced to ONE implant. UPDATE: 1/4/19 still on ONE implant and I was told he was coming that day so he can fix it.

Then days before Thanksgiving break, I was informed by none other than my son that the interpreter will not come back. This was happening at the same time as the mini mic and FM issues so for a good month he has been without services in the inclusion class – yes I know violation.

(Image of him in his little workstation)

So that triggered an anxiety attack for Mama. And I didn’t realize it till 2 days later what was wrong with me. This is when I know I had to take an emergency anxiety pill. Thankful for that. I’m not into taking pills but sometimes , you just have to bite the bullet and pull the trigger. I felt like I was having palpitations. And Yes, it went on for two days before I realized it.

We had an IEP this December (right before Christmas break) and I’m expected to sign by my birthday (interesting birthday present right?)

There he is On Christmas Eve with his phone we got him on his birthday. Despite my objections, (I wanted to get him a smaller device like a kids watch) it has opened up his closed off world a smidge but we try to limit his time, use and contact since this is opening up many platforms, social media, the internet can is a crazy place and we are learning as we go along that we know he doesn’t understand quite yet.

We had a quiet summer because I had some babysitting duties. It prevented me from doing our beach outings and small trips. But we also had at home therapy, which I didn’t want to cancel. We still had little outings locally like parks, pool time, nightly ice cream truck, etc. I tried as much as possible to do it super early or later in the day so I can prep dinner. So I had to stay within a good driving distance. I’ve seen him thrive with these therapies. Despite the crazy system, (more on that in a different post)

2018 was not without some sadness. I lost the person that raised me, my grandma, L’s last living great grandmother. Later in the year, we lost his last living great grandparent. We are ever so grateful to still have both sets of grandparents and bonus grandparents (ones we choose and ones related). This was a doozy because he is at an age where death is kind of hard to explain and when I explain things I’m pretty forward with it. No BS, straight to the point. So I broke it down in a way that I knew he understood. (Minus the specific and horrid/awkward questions that followed). Her body is done but her spirit lives on. (Thanking Sunday School lessons immensely).

2018 I also had a health scare and will leave it at that.

I did not put him in any camp (unless you count Camp Mom and joint Camp Parent Associations). When we would join forces and tag team the kids because we are always outnumbered and we are tired. Summers can be a challenge but I was dedicated on making it chill, fun and getting him to just roll with it (he’s so used to schedules and routine- I am always trying to shake things up a bit because THAT is LIFE! It is messy, unpredictable, chaotic and not always planned. Some people think I am a glutton for crazy/punishment but as much as I want him to be at peace with a routine and his usuals, that just isn’t realistic in the real world. I need him to be able to navigate the world knowing he can handle what life throws at him and it may not be our way but having experience is the way I believe he will learn. It’s how I learned. I never truly went on someone’s word. I always had to get my lessons through experience. Even so now, while I am still walking on this Earth, if he has a tough time, I will be able to be here when it IS or GETS hard for him versus him having to face it alone. I pray everyday with his impeccable memory to look back and see these memories from a more experienced lens and see the lessons and experiences we showed him. I would hate to have him go through anything alone. I got too much into this so I’ll discuss on another post later.

As you can see, not doing this regularly has my brain unorganized! I am rambling! I always say, “one day I’ll get it all together,” but realistically, who has it all together!? I mean really??

The years seem to go at a faster pace than before. 2018 came and went. I felt like I barely got to sit back and revel in all of its crazy – and that was one do my goals, to be more mindful and present. Horrible fail. I’m still puzzle piecing most of it together but I don’t have time to recall it all. I overheard someone talk about goals and vision boards. I would love to visualize a year ahead but I don’t have time to think a whole year. I’m trying to get through the week! Goals?! My annual goals look a bit different from everyone else’s. But hey to each their own!

Cheers to a happy, healthy, mentally stable and blessed 2019! May our kids thrive, grow and God allows us to be alive to revel in His miracles, our kids. And that we can manage to squeeze a little ME time to ourselves.

ok I do have one goal: start blogging again. (once a week?) 🙂🤞

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…

 

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).