Mother’s Day Quarantine edition

A Mother’s Day like no other. Sequestered -ish in our homes. We can’t be with our fellow mama-friends and family. We can’t celebrate with the ones we love and hold dear. Even if we make our drive by rounds, we can’t necessarily hug them. I see posts making visits with the six foot social distancing. In between a glass door/ car window/ car to curb/ across the street. If you are lucky enough to be able to hug your mom, enjoy it whole heartedly.

I am in my head, pretty quiet and in my emotions today. I didn’t want to go for a run like my boys did. I know I should be happy to be alive, to be healthy and a mom, but I am sad, emotional, tired. I am thinking of my dad – I miss him and can’t see him. I miss my grandmother in heaven who will celebrate another birthday in heaven. This year has been insane. 2019 where we live was just as crazy. Then we come into 2020 and the vibe is off. Then fast forward toward to mid January and it’s been nonstop emotional roller coaster of craziness and it just hasn’t stopped. I guess I’m still trying to wrap my head around it all. I’m good at putting my feelings aside and being the robot : getting through the day. I know maybe not the healthiest but that’s for another time. I know I can’t be the only one that’s not feeling themselves but smiling through it all and quietly freaking out. I’m not the best at expressing myself because I’ve been taught to suppress those feelings and I react weird when people show emotion. It’s awkward. I know. But I digress…. another post about my emotional well-being.

We are reminded that the things we held in high regard, the things that we found were important, are no longer and what we realize are the people and our basic needs. But rather thinking and dwelling about what was, let’s think about what is and what we CAN do.

We’ve got so many virtual platforms. Zoom, Facebook, Instagram, Snapchat, google chat, you name it. We have a means of ‘getting together’ without physically being there. Of course, it’s not the same, but this is the best alternative. Make the best and most of it.

I am able to see my son’s academic struggles and figure out how to help him as best as I can. I know most aren’t happy about the homeschooling part but this was an opportunity for me to see first hand of his struggles, see what the plan sort of looked like in the class setting and see what I’ve fought long and hard for every single year.

Stay connected, be present, don’t be so hard on yourself (mamas) and if it all doesn’t go according to plan, it’s ok, we are ok. I admittedly am one of those things I need to check off the list and if it doesn’t get done, I feel like nothing was accomplished and the day was ‘wasted’. But I know it isn’t. I have my family, who are healthy, I have my family members, many of whom fight to keep patients alive directly helping them fight off COVID19. And they’re still with us. I try to make it a point to contact my family more. I have more meaningful conversations. I do things I previously didn’t have time to do. I am honing my advocacy skills. I am helping others.

This isn’t the end. Keep positive. Trust that God has a plan. This may not be how we want it, but it is what we have. It is temporary. Reevaluate your lives. Do things you never had time to do, if life allows. Don’t sweat the small stuff.

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Breathe….

Like many others, we spend alot of time using up the Wifi capacity: social media, email, news, scared relatives (maybe an entirely whole post in itself!😳), whatever fits this list.

So it goes without saying the amount of fear, panic, anxiety and worry everyone has. It’s completely understandable and if no one has validated your worries, I validate you, now. Some people are sometimes trying to not let the fear get the best of you, they fail to be supportive to others, or insensitive.

I have tried to write this up but LIFE happens. I have had a hard time, like many others. Too much worry, fear, stress, anxiety. The more I see things unavailable on our grocery store shelves, anytime someone doesn’t respect the 6′ ordinance of personal space, when someone doesn’t bother to wear a face mask or covering of some sort, when I see the numbers rise…believe me, I am with you!

I’ve had to make a decision for the sake of my anxiety-ridden child and my own mental health to turn everything off. News, social media, whatever has been triggering to me. And make a mindful decision to focus on the positive with all the crazy negative/scary/stressful that’s going on around us.

– Just take a few deep breaths, and focus on inhaling and exhaling.
– Take a few minutes to stretch and just sit in silence, if possible, in the sun, closing eyes, sipping on something and just being.
– Workout – outside, inside, dancing, get the heart rate up up and do a solid workout for 30 minutes. If possible, twice a day. It really does change the mood. Do it with yourself, with family, use it as a bonding moment.
– Play some board games, create a game!
– Have conversations, deep ones, serious ones, emotional ones. These are the times to have them. Most of the time, there’s just not enough time in the day to address things and hope they go away, especially the uncomfortable conversations.
– Teach some of these kids some life skills: prepping food, cleaning, dusting, mopping, wash dishes, clean countertops, gauge what they can do, and what you can tolerate (because I personally need things done a certain way but if they’re trying, i’ll take all the help I can get!).
– Create a schedule.
– Learn to give yourself and everyone a break. We may not get everything done that day. AND THAT IS OK! If you get nothing done, that’s ok, too!! Learn to go with the flow of life.

I felt like this pandemic forces us to slow down and appreciate what we have. Think about what we need vs. what we want. Calling people we haven’t been able to call because of life. Have virtual happy hours, virtual calls to family members from various platforms: Facebook, Instagram, SnapChat, Zoom, Google Hangouts…. With technology there is a way to be in touch even if we can’t physically do so. Unfortunately, I feel like this is the normal we will resume until we can fully identify everything about COVID19.

All I know, is we have to take this moment by moment, day by day, and just breathe…..

We all have our own internal and external struggles. We ALL have to be kind, patient, understanding, helpful, and just do what’s right in our heart and how you want to be treated. Be mindful, everyone is going through this. And put some perspective on it. I’ve got a dad who we haven’t seen in over a month – NO visitors allowed! Maybe the person next to you, just got news they’ve lost a friend or family member. Let’s not forget, I, among many others, have a special needs child – who may or may not understand what is going on.

Use the bear hibernating analogy, we are bears, there’s something bad going on and we need to hibernate. Adjust to the kids as you see fit and as they understand. Again, breathe….. You can’t fill from an empty cup, learn to take a moment to yourself so you can fill everyone else’s cup. breaaaathe…

Home Schooling Observations

I wanted to make a quick observation about Home schooling. We really work hard throughout the school year to encourage our children to improve themselves, better them, expand their comfort zone, teeter the fine line between going beyond their comfort zone all the while expanding their “life experience”, whatever that may mean for you and your child.

I didn’t have a chance to write down everything during the last month but there were a few things I observed in “home-schooling” that I wouldn’t otherwise notice.

A. Lucas can seem like he’s following and keeping up with everyone and everything going around him BUT..he doesn’t. He does an exceptionally wonderful job doing:
1. Seeming like he is actively paying attention. He will nod, give you the eye contact, do almost everything that makes it seem like he’s soaking it all in and he actually is NOT! He picks up on certain words, cues, visually and otherwise, and creates his own deduction MOST times. I can’t say he never is paying attention but more than 50% of the time, he really isn’t. He follows the lead of others around him, he learns how to compensate in other ways that make it seem like he is. Does anyone else’s child do that? Is there a term for this?
2. It’s amazing to watch him actively learn, think and grow. It’s unfortunate that schools, limit access, to be a part of their child’s education. I feel like every time he comes home, I’m given this puzzle pieces and despite missing pieces, we have to continue on and hope I’m doing the right thing.
3. HE LOVES SCIENCE! Yes a lot of information, a lot of vocabulary, and a lot of reading. But I knew that he struggles with reading and processing and everything reading comprehension related – and typical child related when they aren’t interested in the topic. I got that. I decided we can’t do the typical reading textbook. I needed visuals, breaks, reteach, recap the paragraphs, just to engage him. I would sometimes take reading breaks and look up a visual or even a video so he can process it that way while it is still fresh in his head. He does like it! And I love that when I think he doesn’t know the information, he doesn’t really default to “I don’t know”, which is typical response to everything he doesn’t care for, but he makes an effort to look for the answer or we at least do it together.
4. Math – He can get through all the review chapters he’s been given, because it’s been taught. But as always discussed when you do a whole capter recap of 4 subchapters, trying to cover ALL the lessons in the past month or so, he breaks down. He is so very used to routine. This is the topic of the day, his mind programs itself as this is what you will be working on. DONE! If he gets it, he gets it. If you have him be flexible in thinking, about when he learned the lesson, recalling it, and execution…FORGET IT! I have to reteach him all the time. Not that I mind, it’s a great refresher – the only NOT SO GREAT is if I have to learn the common core way versus teaching him OUR old-school way.

I know for the past month, it has MOSTLY recap of lessons they’ve done. But i’m pretty sure we are no longer entertaining opening the school and IF they do, at best it’ll be a rough one to transition back to for my guy. Anyone else in the same boat. He does NOT mind homeschooling at all, but when I ask him, he misses, “his friends and fooling around.” I guess i’m NOT ANY FUN! I try to encourage walks mid-day to break up the monotony, runs, quick workouts to get the blood flowing and to wake his mind up, LOTS of mental breaks but in addition to it all, lots of “i gotta pee”, “I gotta poo”, (he doesn’t poo this much a day so i don’t know what’s going on!).

Overall, we, like many others, have this transition into out all day to stuck at home and that’s not how we see it. We see it as an opportunity to enjoy each other’s company more, bond more, cook/eat/bake more, learn and expand on life skills, on conversations we don’t really have time having, on being present and mindful of each other and taking a moment to just BE. We are so busy doing our day to day, I myself have a hard time to just BE.

Such is life..

I’ve got a lot going on at the moment. And without getting into details, life is just crazy with the ups and downs. While one thing great and an extremely long time coming, I find myself extra emotional because there’s a lot going on with my family.

Ls grandfather, my dad, has been in the hospital for a month – A. FULL. MONTH. AND. COUNTING! If you’ve had any one of your parents in the hospital, it just isn’t easy to see them like that. It’s even more gut wrenching to watch the other parent go through this and talking to them. It’s just, UGH! Hard. My mom is just all over the place and I’m just trying to be strong for her.

I had to advocate for my dad this time around. He hasn’t spoken or stood on his own. They’ve misdiagnosed him. Hot mess. He ended up having another stroke but not the initial reason why he went to the hospital. My mom doesn’t know how to navigate insurance. She’s not familiar with being the family member that has a sick relative. She didn’t question the doctors or staff. I did and I’m don’t see a problem in doing so. Being able to understand what they’re doing, why they’re doing it and how is al vital to his overall recovery. I’m not here to just watch you do your job. I need to Know what’s what. I’m just NOT that type to take what people tell me and just they are the almighty know it all. Yes, I respect your job and your knowledge but there’s always someone knowing more or better or see things others don’t see or pieces things together… you get my drift?

My advocacy for my child allowed me to do what I have to diligently do for my dad (and my mom) during this time. But it’s just hard to be strong. Hard to see your parents like that. Hard to watch them, feel helpless and can’t do anything. Hard to see the other partner. It’s heart and gut wrenching. I’ve gotten into arguments with his social worker who tried to discharge him after a few days. I’ve had to leave in the middle of whatever it was I was doing just to come there and have a “conversation” with her.

If you’re out there and reading this, pray for my dad. If you’re not religious, but believe in a higher power, give my dad a special shout out in the universe to whomever is listening. Pray he gets speech and ability to walk back. Pray he gets into the care facility we want him in (it’s connected to a hospital).

It’s hard to try to move on go about your days when things like this happens. But the saying goes, “keep pushing”. Has been the motto in the past few weeks. I have tried to make myself a priority with all the extra stress to go to the gym. Even if it’s once a week, it’s something. Between my responsibilities, my family and now this, it’s hasn’t been easy for any of us. We are trying to keep ourselves together and I swear if I can fly away right now; I’d do it in a heartbeat just to reset. Jesus, take the wheel!

2019 recap

We have graduated all current therapies. 2019 was a focus on social emotional related skills. Somethings I could not manage to help my child with. It’s organic to me. I could not wrap my head around how I can make it relatable to Lucas.

He has issues just emotionally regulating himself especially during high energy moments where can all cheer for a team and regroup after a few moments but his energy just sits at the peak of the excitement and it’s hard to ‘come back down’.

Even though this will be an ongoing process, I wanted to try to get professionals to set a good foundation, not only for him but for myself, to help him. I’ve always been a believer of mom and dad – even family – are our child’s forever therapists and just because the appointment is done for the day, doesn’t mean the lessons are done. It’s hard. I often wondered if I was doing too much for him, but I don’t regret a thing. I’ve done this all out of love. I have based my decision of doing this on “wanting him to thrive when I’m gone”, mentality. I have always been honest and real (often too real), and never sugarcoated things. I do this because it’s a cold, cold world. And I need him to be ready for the good, bad and everything in between.

I’ve dedicated an almost 12 years to L. 12. TWELVE! I can’t believe how much time has gone where my tunnel vision has been all about L and rarely about anything else. I may or may not have lost some close connections (it wasn’t meant to be they ride with me in this journey), and I’ve strengthened and has solidified some people in my life that I know are “OUR PEOPLE”. I don’t regret it one bit. Because now, in 2020. I think I’m ready to put ME first. Mama’s turn.

He’s out of therapies, he’s in an ‘okay’ place in school. (All relative). He is getting more independent everyday and despite it slowly breaking my heart, this is exactly what we have busted our butt on …. him coming into his own, acknowledging his uniqueness, and just letting his light shine unapologetically. He’s a clown, fools around, slowly getting sarcasm and humor, slowly coming out of his shell. I see more of his confidence shine and his advocacy skills are improving.

His accomplishments are mine and if I can put that in my resume, I truly would.

I would want to work in the field of helping other families navigate all the crazy systems – school district special education, medical insurance, community resources, all the admin associated with it. It is a forever arduous process and when you feel like you’ve peaked and things fall into place, something happens. It’s an emotional/ mental test of our lives and it never ends but we always come out stronger, a better advocate, and better as a person, maybe a newer person (because we felt like we died inside after the chaos! 🤣)

But one thing is that we (as in special needs parents) we take a beating all the time and we keep doing for the love of our child.

Prioritizing ME 2020

I’ve often mentioned in my past posts where I attempt and try to put myself first and I’ve failed miserably a thousand times over.

At the end of this year and coincidentally my 40th Chapter (or how others call – Level 40), I am going to make myself a priority.  I don’t know how I’ll manage to do it – but I’m putting it out there in the universe and someone hold me accountable! (but if you see me hanging by a thread, don’t and let it be … )

I have been reflecting more than usual on the past decade. I started my 3rd decade pretty uncertain, stressed and just overwhelmed. Right at this moment, I don’t even know what I did for my 30th. I know I had Lucas and that very same year, I have had a challenging time with L’s behaviors and then autism was thrown in the mix …..

Well, it’s been almost 10 years and I’ve literally dedicated my entire being to my only son, my SONshine, my life, my heartbeat, my game changer, my reason for halting all that I ever knew … prior to anything before him. He’s changed me and made me who I am. Good and bad.

Before you throw stones at me for saying “bad”, I say it to say, I have put myself last above all others. In the process of putting everyone before myself, I seemed to have lost my way – my self confidence, my fears have overtake my bravery, you get the idea.  It’s been hard and I’ve been reflecting on how this is NOT how I saw my 40th to be. Never did I imagine I would be a SAHM special needs Mom who hasn’t worked in almost 12 years. NEVER! And if you told me this 12 years ago, I’d laugh and say,”I’ll never do that! My mom taught me to never rely on anyone and be independent.” Wow! How the naive have fallen!

Looking back, I wish I’d taken more time to speak with someone; to help me deal with everything that I was and still am going through so I have a good mental space to be a better mother to my son and person to everyone else.
I plan on addressing my mental health for the next year (but starting to make my appointments now). I deserve to be healthy in all ways. Mind and body. I feel this would only help me come to grips that I’m actually 40. I’m going to prioritize exercise. I am also going to make better efforts in my taking my medication.

I’ve let this go on long enough and I’m not going to sit here and feel sorry for myself. I can only control myself and I can’t blame anyone but me for it. Time to take me back and fight for myself.

DISCLOSURE: I’m a self diagnosed PTSD, depression and anxiety. I’m not into taking medication because I believe it does more harm than good. I do, however, intend to figure that out through a professional while working on my physical. In this same process, I intend to slowly acclimate myself back into work. This has been the main trigger of anxiety is being out of work for so long, I feel like I no longer have a competitive edge. With all the changes, I think having someone to talk me through my crazy, is important step in putting myself first. If you know anyone else who is going through it, I’d be grateful to have a companion.

PRAY. FOR. ME. And if you see me out of sorts, reach out because my stubborn and embarrassed ass won’t. ❤️🤟

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.

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.