#SelfCare

“You can’t pour from an empty cup, take care of yourself first.” ~Unknown

It’s no coincidence that this blog has taken me forever to complete. I almost scrapped the idea altogether, however, breaking old habits is something I’m trying to get away from. Self Care is something I have always struggled with and somehow delay but I’m trying to do better.

I’m no stranger to taking care of others. I’ve done so most of my adult life in one way or another, however, motherhood is an entirely different ball game. Being a special needs mother is taking the game to Olympic levels. Motherhood is the hardest job in the world and that goes for all moms whether you stay at home, married or single, or work but being a mom to a little with special needs requires a serious conscious effort to not completely lose your shit on a daily basis.

Within the last 6 months or so I feel like there is always a story online or on TV about a parent doing the unthinkable to a child and more often than not the story includes “a __yr old child with autism”. Immediately my heart sinks every time. In the past my first my reaction would be “People are crazy! This world is awful!” etc. and all of that is still true however, now I also find myself thinking “I wish they would’ve asked for help.” “Maybe they should’ve taken better care of themselves.”

The touch of empathy I feel for the parent and the way my heart breaks for that child has come from understanding that without self-care, years of not sleeping, years of crying (for both parent and child), years of frustration (for both parent and child), or years of no temporary mental or physical escape or relief IS A RECIPE FOR DISASTER! Everyone suffers, Nobody wins and in the most horrific cases lives are literally lost.

It is also that empathy that led me to realize that even I need to do more to take care of myself. I haven’t slept through the night in almost 3.5 years, I haven’t gone to get my hair done in almost 2 years, an occasional pedicure maybe? If I can run out on a weekend when he decides to take a nap that’s a luxury. Most times even that turns into just running errands. Oh the joy of running errands without having a 2 hour time limit. That’s about as long as Caleb will last out and about without having a meltdown and just becoming completely overwhelmed. Happiness has become not having to calculate, plan and navigate your way around a store so that nothing triggers an overwhelming reaction. Brunch with friends? Nope. A day out shopping? Girl Bye! But somehow I have to find the time.

When I started this blog and started working my other job with the Non profit I thought those things were my self Care and my outlet but that was only a part of it. Helping others and inspiring others feels great but they still take a lot out of me, from me. What I needed to do was find a way to pour energy back into me, to fuel myself. TO LOVE ON ME! These last few weeks I’ve been making an effort to do just that. I know now that they don’t have to be Grand events just little things for me. I started working on my vision board, setting goals and dreaming BIG! I started going to the gym at least 3 days a week after I drop Caleb off to school. I even bought some workout clothes to fuel my motivation. I took an extra long lunch break to get a manicure and last weekend during his nap I took that time to take myself out to a small lunch. These are all small things I used to do before Caleb that I totally took for granted and that got pushed aside and getting back to it felt good!

The mom guilt I thought that would wash over me never came. In fact it recharged me. As I let myself simmer in the “me time” I accepted that doing for me doesn’t mean I’m taking anything away from Caleb. On school days he is away from me from 7:15a-2:30p surely he will survive while mama goes to get a pedicure or massage.

Motherhood is about balance and constantly remembering that before I was a mom I was a whole woman, I am STILL a whole woman and when Caleb grows up and has his own life I don’t want to be left wondering where the hell she went.

Pre-K II…A Boy’s Joy

“K-8 Learn, Excel and Create” -our school slogan

I came home excited from new parent orientation and I couldn’t wait for Caleb and Gemma to see for themselves. I had all Gemma’s questions answered but my mama is a lady that needs to lay eyes on things/people for herself ESPECIALLY when it came to her grand-baby. Caleb had ABA the morning of which was perfect because we would talk about how he was leaving “school” to go see his new teachers. (This was how I decided to distinguish between the two as he would still be going to ABA on days he didn’t have school)

We pulled up to the big school and parked, he jumped out wide-eyed as other families were walking in from the parking lot with us. He was excited to see the bigger kids and quietly took in everything around him holding mama and Gemma with each hand. When we got to his classroom I got down and told him this was his class and his teachers. “Teacher?!” He reaches passed me and grab the door handle and opened up the classroom door on his own. It was hectic to say the least, parents and teachers and teachers aides all around. One child was screaming his head off and I looked down at Caleb to make sure he wasn’t triggered. Caleb was GONE! He had spotted a boy at the table playing with letters and he instantly had a buddy and had found his happy place.

I turned to Mom who was meeting Miss M and we both just shrugged. One of the teachers assistants swooped in and got Caleb his own bucket of letters. She looked up at me and said “He’s gonna be just fine.” I’d never felt such relief. Meanwhile the other kid was still crying his little heart out and Caleb hadn’t even seemed to notice.

It took some work to pull Caleb away from his letters but I wanted to show him his cubby with his name, the computer station, there was even a train table on the other side. He ran through the class like we were in Toys R Us! (R.I.P T.R.U) My fellow newbie mama was there too with her little and it was like watching Caleb play with his twin. The ran and recited numbers and colors together. His mom and I snapped pictures and laughed. Once I get that feeling of relief came over me. We didn’t speak much about the specifics of our boys but it was obvious they were alike and why. It was obvious that it felt good to silently connect with someone who knew exactly what the good days and the bad days were like. We exchanged numbers that day and although we haven’t used them I know we will.

When it was time to go I felt bad telling Caleb, I thought he’d cry but we said our tear-free goodbyes to everyone. The walk back to the car was as quiet as the walk in except there was a slight smile on his little face. Gemma and I smiled at each other and we headed home.

When we pulled up to the house I heard Caleb was “Teachers? Want teachers.” and then tears. He was ready! He was ready to go back to teachers. We’d have to get through the weekend but I was happy he was excited.

After a few requests for teachers over the weekend, the first day of school was here! Dressed in his uniform with his backpack he was ready! He skipped down the stairs, jumped in the car, smiles from ear to ear when we pulled up.

The first day of school was a success! No tears shed…he was cool, calm and collected and I followed suit.

Pre-K I…Maniac Mama

“K-8 Learn, Excel and Create” -our school slogan

Well the countdown to the first day of school was here! Uniforms were ordered and had arrived. (OMG they were so tiny and cute..LOL) I’d been to Walmart with my school supply list and looked around with a dozen or so other parents as we picked out crayons, a nap mat, glue sticks, a new backpack and a Paw Patrol lunch bag…oh and a matching water thermos of course. If you know me you know I hate to shop so once the thrill of “first time school shopping” subsided I went home and ordered the rest from Target online. It was all happening and happening quickly.

SCHOOL was the word of the day every day around the house in an attempt to get Caleb prepared. “This is for when you start school.” or “You need a new backpack for big boy School.” He even wanted to wear his backpack in the house, which was a big deal, wearing anything other than the necessary clothing was a big deal. Remember we were a hat, scarf, coat, sunglasses, pants(in the house), book bag free zone!

Since our communication has improved it was important that I prepared him and gave him information so that he could process. Even if it seemed like he didn’t understand, I’ve learned that he does. However, because we’ve been calling ABA “school” I was afraid he’d be confused and angry the morning of when he realized we weren’t turning “that way!” to go to ABA and instead going someplace new. My biggest fear was that we’d have a first day of school meltdown before we even got there and possibly another when I left him with these strangers. UGH! #SuperMomFail #MomAnxiety #Jesusbeafence

Anyway, as I tried to remain cool, I made my way to new parent orientation two days before school started. Children weren’t allowed to come so I could manage my anxiety in peace and not worry about his. The principal and assistant principal spoke about the grounds, uniforms, schedules and the school STEM program which was all good to know if this would be Caleb’s school for years to come. I was feeling good, I was making peace with leaving my child with these people and then a slide came up on the presentation that said “SCHOOL SAFETY!” and just like that the tone changed.

The principal went on to talk about how the climate of our country has impacted the access that we would have to our children during the school day. Due to school shootings and the need to keep our babies safe after the first week parents wouldn’t be allowed to walk their child to their class without going through the office, signing in and getting a visitors badge. ALL parents would need to drop their kid off in the drop off-line around the back.

“I’m sorry? Say what now?? That’s fine for everybody else’s kid but my baby is 3!! Who is going to get him to class? He won’t go with strangers. There must be an exception for pre-k.” My mind was racing and in that instant I thought maybe Gemma was right! Maybe it’s too soon for him to start school. Maybe we should home school. Who needs school anyway!

Once the orientation was over we split up by class and got to go meet our teachers and see the actual classrooms. Miss M must’ve seen the terror on all of our faces because we couldn’t sit down fast enough before she told us that the drop off-line would NOT be for our little ones. Pre-k parents WOULD continue to walk our babies directly to their class and at the end of the day, the whole class would be waiting in the office for pick up. Door to door service as expected. “Thank God!” We all sighed with relief and I actually told her out load how she probably wouldn’t have been seeing Caleb if we had to drop him off like the rest of the school. LOL

Once that was clarified I went back to feeling great about Caleb’s Pre-k experience. The classroom was super cute, well-organized, colorful and Miss M was as bubbly as the people on Sesame Street. I had heard about her and everything was positive and accurate. Between another mom and myself we rattled off questions from our list in our phones. Some of the other parents had been through this before and by their reassuring smiles you could tell they’d asked these same questions the previous year. We asked about eating, napping, potty time, how many kids, how many students, would class be integrated. All of our questions were answered with ease and at the end of the tour I was ready to bring Caleb in the next morning to see his class and meet his teachers.

Once I left orientation I was confident Caleb would love it. I knew he’d be excited. I was affirming that and speaking it into existence. I couldn’t handle it otherwise. We would find out for sure the next morning…first impressions are EVERYTHING to my young cub.

*Side bar: The Pre-K program for kiddos with IEPs consists of children between the ages of 3 to 5. So depending on the disability or developmental delay they could be in this program for 2 years. However, the class is mixed with traditional pre-k students who are 4 years old*

School Daze

“Education is the passport to the future, for tomorrow belongs to those who prepare for it today.”

The day before Caleb turned 3 I met with the school district to discuss Caleb’s eligibility to start pre-k in August (a year earlier than usual) and to prepare his Individual Education Program (IEP). I sat in the meeting with school board executives, special needs educators, occupational therapists and speech therapists to discuss Calebs strengths and challenges and what it would mean for him to start school at the age of 3 years old.

I was proud and beaming as I bragged about his love for ABCs and 123s, since his initial assessment he’d gone from counting to 20 to counting to 50 and up to 100 if he counted by 10s. I told them about his interest in different languages and how Octagon was his favorite shape. I also had to tell them about his challenges and my concerns. Caleb wasn’t eating well still and not using utensils. At the time he was still having aggressive outbursts and I was worried about his interaction with other little ones. (Still traumatized from daycare) I told them that I thought Caleb may do better sitting close to the teacher and would definitely need lots of attention and affection. It’s what he was used to home and at ABA.

By the end of the meeting I was feeling optimistic. Everyone in the room was encouraging and put me at ease. They reminded me that this would NOT be like daycare and that his teachers have trained and worked many years with kiddos like Caleb. There was nothing that I mentioned that would be new to them.

In fact based on his at-home evaluation they’d determined that Caleb no longer needed occupational therapy and that he would only receive additional speech therapy in his classroom. This was great progress! They’d also decided to enter him into the school system as “developmentally delayed” and not AUTISTIC in the system. Did this mean he was no longer autistic? No! It meant that they believe he could handle the majority of normal pre-k tasks and that by kindergarten he could even be integrated into a normal class and not a special needs classroom. All of this was premature yet positive and I was a happy mama!

We’d already seen great improvement in some of his behaviors from ABA, specifically his aggression towards others. This was my main hesitation with school, other children and Calebs lack of socialization skills. He’s always liked the presence of other children just not the children themselves and that had not changed with ABA. At least not at this moment.

In mid July it was time to register him for school, I drove onto the campus of this K-8 elementary school and everything looked large…extra large compared to my tiny baby. Once registered the lady handed me a school supply list, parent/teacher orientation information and his uniform requirements….“I’m sorry you must be mistaken he’s only 3 and will be here 3 days a week.”

“No ma’am we are a uniformed campus even for our little ones.” She smiled a little which told me I probably wasn’t the only one a little surprised by this.

No! No! Hell No! I wasn’t ready for uniforms, school buses (which I declined) and school supply lists! My baby just turned 3! (I was officially losing it!) He could probably teach a kindergarten class but he wasn’t even eating with a spoon or a fork! He wasn’t potty trained and as of right now potty was a fun game to flush loads of toilet paper(more to come on that). She continued on about the drop off and pick up lines around by the cafeteria and I completely blanked out. This was no nursery school, this was elementary school and my baby was headed off in a few short weeks.

I smiled and thanked her but internally I was rolling my eyes. The poor lady was spending her last days of summer in the school office with unprepared parents and I had made her my arch nemesis in my mind…hahaha!

I took my papers and went home to countdown the days for the first day of school. Was he really ready? He was doing Pre-k prep at ABA. He was experiencing table time and circle time, he played with/around friends. We referred to ABA as school anyway and he loved going. He would ask for his therapists on weekends and days he didn’t go. School should be just another easy transition..right?! Sure! Ok.

I felt silly and overwhelmed but I knew Gemma would calm my nerves and reassure me that this was what’s best…yeah right! My mom was not having it! I think she lost it at the uniform part also and I was so happy she had not come with me to the school to register. For days after she looked at his baby pictures and made comments like “Oh he was just on the changing the table.” and “Does he HAVE to go? Or can we just wait until he’s 4?”

Oddly enough her dramatics did make me feel better and did reassure me that the time was now! We had to rip the bandaid off for both Caleb AND Gemma!

She was right though, he was just a tiny baby laying on the changing table.

The little engine that could

I know. I know!! We’ve been missing in action again. Sorry folks! The last 2 months have been about nothing but transitions. Caleb turned 3 at the end of June which meant the end of our early steps services, his lovely therapists who had been coming into our home for the last few months would no longer be coming to see US. The good news is Caleb would be eligible to start the pre-k program at our local elementary school due to his diagnosis and would continue to get services through the school district. In the meantime though we had to fill the gap for summer (June-August) and with that I decided to enroll Caleb in the Applied Behavior Analysis (ABA) services. It would cost me but I felt like him not having therapy for months, when it had proven to be so beneficial, would cost us more in the long run and I don’t mean financially. So off to ABA we went!

Surprisingly I found a place that could take him right away. I say surprise because we had been told to be prepared to get on many wait lists some of which could be up to a year-long. In fact, the first few calls I made that’s exactly what we were told. Of course Caleb had yet another evaluation and once that was complete it was determined that he could use between 12-20 hours of service a week, my budget opted for the 12 hours so he goes 3x a week for 4 hours a day. When we left the evaluation he cried so I knew he would enjoy it there and that made me feel great. All the therapists were overjoyed at how sweet and cute he was so naturally he ate up all of the attention.

In addition to new people and new therapy and a new schedule, we also moved to a new place as well. I turned every aspect of this kid’s life upside down! Caleb has more space to enjoy but it was a challenge to say the least getting us packed up, moved and unpacked. Oh yea and two weeks later there was a 3rd birthday to plan! Nevertheless, my little boy handled it all like a trooper. I continue to be amazed and in awe of Caleb and his resilience. He may have trouble transitioning between tasks but I tell you the things I often feel would bring him great anxiety he just takes them in stride.

Within Caleb’s first two weeks he was mastering the initial levels of his ABA program his case worker recommended. Examples of things they work with him on are eye contact, peer interaction, responding to his name as well as simple instructions, pre-school prep, fine motor skills. Almost immediately we began to reap the benefits at home. Caleb’s vocabulary has increased, his aggression has decreased. He is responding appropriately to instructions and questions. It’s been wonderful (a word he is now using to express when he is pleased)…LOL. He is also doing more imagination play and has become less focused on having the ipad or tablet at his finger tips at all times. The best part is he loves his “school” and his therapists. On the days he goes he is too excited to even eat breakfast and he often asks for “school” on the weekends. We could not be happier.

The joy of dropping him off and not worry about getting a call about his behavior is such a relief. Having professionals who understand how to handle him and still love on him has been a huge blessing.

Recently I read a comment in a Autism blog about how some people and families with autism don’t like the thought of ABA because they are trying to “normalize” our children and “take away the autism”. I couldn’t disagree more. Do they acknowledge and work on decreasing some of the stimming behaviors? Yes but only to so that they don’t interfere with the child’s ability to focus on tasks.

And before I go on my rant let me say I can only speak for our ABA facility and the providers we’ve worked with. I do not pretend to be an expert on ABA and the intentions of all providers.

Anyway, at our facility they definitely try to interrupt Caleb’s pattern behaviors that prevent him from focusing to his full potential. Our main goal with Caleb is pre-school prep and increased independence and it’s been really helpful thus far.

Stay with us as we continue down yet another path on this autism journey. I promise not to keep you all waiting so long again.

Autism, Appointments, Assessments…Oh my!

“Different not less” – Temple Grandin

Life post diagnosis is not at all what I imagined it would be. That sounds ridiculous I know, it sounds just as ridiculous to me. Like magically I would get the diagnosis and things would be better. NOT!!!

Nothing at all has really changed except for the number of appointments we now have and the number of places and resources and research I have to coordinate and deal with. Things have not become easier, not immediately anyway, and I’m not sure if it ever will. The search for our new normal has been the hardest for this not so patient mama.

All in all, however,Caleb’s diagnosis has still been a positive thing and I constantly remind myself of that. There is so much he could now be eligible for as far as getting the help he needed to progress and grow and learn. The first thing on my list was ABA Applied Behavioral Analysis https://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba I needed to research the benefits, locate a facility, contact my health insurance, oh and make sure that the facility that I found would be best for Caleb AND take my insurance AND close to home AND the co-pay would fit into my financial budget AND would also NOT have a year wait list…..that’s a piece of cake. Done. Done. Done. And Done!

Surprisingly I had found a place that could evaluate Caleb almost right away, the evaluation would last 2.5 hours where for 2 of the hours I would watch from behind a closed-door through a mirror. Naturally he was Mr. Charmer and he did great. He didn’t cry or miss me once. We left out of there with a preliminary plan in place that would have to be submitted to my insurance for approval. We also left with a tentative schedule AND the out-of-pocket cost.

I was starting to see why the lifetime cost of an individual with autism could range from 1.4-2.4 million dollars according to researchers.

I left that visit feeling anxious and overwhelmed. I didn’t know how I was going to make this happen but I knew I would. I knew ABA wasn’t mandatory but it was recommended. I knew that Caleb was ready and eager to learn. I’d seen his progress with his interventionist and his occupational therapist and I knew ABA would only allow him to continue to thrive. I knew this. I know him. How could I not do whatever I had to make this happen? Could I live with him not going? Early intervention and OT would end the day before his birthday in June as the federal program he’s enrolled in only goes up to age 3. We also found that he will be starting school in August. Would he receive therapy in school? Yes. Would it be enough? I don’t know. Is that therapy free? Yes Do I risk the chance that it will be enough? I don’t know.

Mom guilt was back and this time she got me good. By the time I got home that day I had ended the pity party and I got to work. I was back to researching and this time I was looking up funding and grants for children with autism. I started applying and praying and applying and praying. If God had brought me to it he would bring me through it.

ABA was checked off of the “To do” list and it was time to work on the next items. I needed to follow-up with a neurologist and I needed to meet with the school district for yet another evaluation so that they could assign Caleb a school and make their recommendations for what assistance he would receive. There was one week where Caleb had both evaluations back to back along with his normal therapy sessions and I was exhausted for him but I knew we had to get this done and he handled it well.

Other than that we were all doing well. I mean what choice do we have?! Caleb’s language has become clearer and his vocabulary is expanding. Do we have meltdowns still? Absolutely. Do we also have normal toddler tantrums? Absolutely. Is he still not eating great? Absolutely….but he’s also the happiest little boy you’ll ever meet who has an endless supply of hugs and the best smile in the world. Both of which he likes to share with strangers.

We’ve had our share of steers and awkwardness, I don’t know if it’s increased or if my Awareness of it has increased. I never apologize for Caleb’s behavior but I often find myself stopping short of saying “he has autism!” I don’t want that to be his label. So instead I usually smile awkwardly and act like they’re the ones that are strange..LOL! I read an article immediately following Caleb’s diagnosis back in March and it was from a mama giving tips on how she navigates the first years of autism and the one thing that struck me the most was when she said never apologize. NEVER apologize, never say “oh I’m sorry he has autism.” It struck me because in those hard moments in public that’s what your brain goes too. You want to apologize if your kid is a little “handsy” with others or if he’s blocking the slide at the playground because he only likes to sit at the bottom, or if he’s screaming his head off at the grocery store mid meltdown and you can’t determine why. You just want to apologize because you could be disrupting someone else’s experiences. However, the point she made which is most important as Calebs Mom, is that you don’t want him hearing you say “I’m sorry by son is autistic”. As if to say it’s a burden and something to be sorry about. Caleb understands everything and he damn sure isn’t deaf so that’s never the message I want him to hear. I also don’t want him growing up thinking his diagnosis is something he has to apologize for.

Autism is exhausting and overwhelming. Autism is draining and frustrating. Autism is challenging and different. But Autism is not Caleb and Caleb isn’t Autism.

Mother’s Day

“If you think my hands are full you should see my heart.”

I was writing my next blog post when I decided that I wanted to take a moment to share my recent thoughts and reflections about motherhood.

Although I’m still very new to this motherhood life, this year has been a challenge and I’m sure there is more to come. The last few months all of my motherhood “expectations”, whatever that is, got a serious reality check. I learned about strength and resilience. I learned about patience, devastation, overwhelming loyalty and kindness. It’s all been a life lesson I’m sure to never forget.

I recently watched a Mother’s Day special with celebrities speaking about their mothers, some of whom were mothers themselves and there was one consistent thread throughout. SACRIFICE! The recognition that mothers sacrifice so much and would sacrifice any and everything for their child. This was often talked about from the child’s perspective and like them I could list a million ways Gemma had sacrificed so much for me and continues to do so for Caleb. Yet as mother I couldn’t think of any sacrifices I’ve made for Caleb. Instead I felt like most of the mothers on the show when they spoke about the choices they made that were best for the child. Most of them were working moms who had to work. They had to leave their kids with grandparents, friends, sitters. They did what they had to do….I don’t feel like that sacrificing, that’s providing.

Being a mother I don’t feel like I’ve given up or done anything exceptional, I’m just a mom. Caleb has to eat, Caleb needs clothes, Caleb needs therapy, I’m not a mother if i can’t provide those things for him. There is no guide-book or reference material on how to do the job that is the hardest and longest ever in life, so you get up and do the best you can each day.

One of the mothers on the program said something and it gave me chills, it’s actually the reason I felt moved to write for this Mother’s Day. She said “When I had my children. I did not know what I was doing but I spoke to God and told him I don’t know what to do so I need You to use me and THROUGH me raise these children.” My Aunt told me something similar when our journey through autism first began. She said this isn’t about me, God has a greater plan for Caleb you’ve just been chosen to get him there. This described perfectly how I felt each day getting up and walking through this journey with Caleb. I don’t know what I’m doing but somehow with each step I do what needs to be done. I am still often amazed at the nice emails and messages I get from people after they read my blog because to me I don’t know anything else. Caleb is my one and only so I have nothing to compare what motherhood should be. And why would I?

These babies are all different and autism doesn’t make our family any more special than the next. If there is anything I would tell Caleb when he gets older it’s that some days were harder than others but we absolutely had a great time, better than some people but that doesn’t make us better just like our hard times haven’t made us less than.

Maybe my “sacrifices” are yet to come, I am only 3 years into this. I just know that no matter what happens I’ll be ready to do whatever is necessary for the greater good of Caleb. 

Happy Mother’s Day to all the mamas who find the strength every day!

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Shirts courtesy of C.U.B & Co.

 

Amazing She Is

“Behind every successful woman is a tribe of other successful women, who have her back.”

The morning after our diagnosis was a normal day. I still had to go to work a. I still had to be a mom. I still had move forward with the hand we’d been dealt. The truth is I hadn’t been told anything I didn’t already know and I had no time to feel down or defeated. Caleb was Caleb, his diagnosis didn’t change anything! In fact when I reached out to my friend who put us on the path of the Early Steps program, she said “Congratulations!” What I’d learn right away was that a diagnosis was a win. It was a win for our family and for Caleb. A diagnosis guaranteed additional services and therapy and early intervention and all of this was GREAT news!!

As I went to check my email and start making calls to set up appointments for Caleb, I noticed I had a message and the title was “MOM of the Month feature”. Lord is that you playing with me??? Mom of the month?? Here I am struggling to keep it together, struggling to be strong, anxious about next steps and I get this email. As I open the email I read:

“Our company ‘Amazing She Is’ would love to feature you on our app and social media platform as MOM of the Month. Our App is currently available in the Apple Store and Google Play. We created this app as a platform for women and mothers to receive empowering words to hopefully realize their strength and that they are not alone in their struggles.”

I was familiar with the app, I had it on my phone. The young women who created it and I went to High School together and often the positive affirmation alerts from the app kept me going. On a day like that day, I would’ve pulled up the app to get some encouragement so the irony that they got to me first was surreal. It was also ironic that they’d ask me to do this interview to speak about how “Amazing” I am when I wasn’t feeling so amazing. However, once I read the entire email a few times, I replied that I would do it.

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I was sent a questionnaire with 14 or 15 questions and they wanted me to answer 7. I remember initially skipping the question that asked why you’re amazing…LOL I just couldn’t wrap my brain around that one. Even on a good day I wouldn’t consider myself amazing, I’m just being the best mother I know how and along the way I hope to help other mothers and families. That was the main reason I was honored to be asked to do this interview. Amazing she is was just that, it’s a community of women and mothers trying to help each other navigate through the hardest roles of our lives. There is no motherhood book with a chapter for Autism moms so we should all be helping each other out. If only it were that easy right?! Well Amazing She Is definitely makes it easier.

Anyway, I continued through the questionnaire and answered the 7 that felt good in my heart. Once I was done I realized that I felt so much better about the recent events. I realized that I truly have nothing to worry about or doubt. I realized that we would be ok. Once again the ladies of AMAZING SHE IS had left me feeling empowered. This blog post is a Thank You to them and it is my hope that we can continue to support each other and others in the Mom Tribe together. xo

Full interview below:

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1.       What is one thing you do to self-reflect or motivate yourself when you feel you are not at your best? I write. Before I started my blog A Mama Bear and her Cub it started as journal entries when I had the time to just emotionally vomit in a notepad but when I didn’t have that time and I just needed to release I would write affirmations and gratitude entries. I’d write those anywhere in a notepad, on a sticky pad, on the note app in my phone. The ones in the note pad and sticky notes would get torn off and put in a mason jar. On those days when I just couldn’t find the words I’d pull from the jar and just read an affirmation or something I was grateful for and it would bring me back.

2.       What is your biggest fear for your child(ren)? Oh Gosh in today’s society there are so many but mainly that he is a black boy in America….who now has autism and all of that is nothing I can change, nor would I but in today’s world not everyone is going to value him the way that I do. No matter how smart and kind and amazing I raise him to be. That’s scary to me.

3.       If you could write down one message now for your child to read when they are 40 what would it be? Dearest son, We had it harder than some but better than most and we nailed it! I’d do it all over again with you in a heartbeat. Love you endlessly, Mama

4.       What do you do for a living (and describe a typical work day)? I am a coach/mentor to new employees for an Insurance company. I work in the Group Benefits division and I work remotely from my home in Tampa. I’ve been with my company for 11 years and I love what I do. Helping people to become successful in their new roles brings me joy. I work from 7:30a to 4p on off-season but I do have busy times of the year when I may work 10 hour days for months. My day consists of lots of 1 on 1 and conference calls, also a lot of data tracking to better improve Best Practices and quality reviewing the work of my learners.

5.       What a word of advice you would give to new mothers? I’d tell them 3 things: 1. Motherhood is hard. It’s the hardest thing you will ever do and some days it sucks…and its ok to say that. It’s ok to say it to yourself or a friend or your spouse. It doesn’t make you a bad mother or a bad woman. It makes you human and honest. 2. its ok to ask for help or just to let others help you even if you don’t ask. It takes more than a village. If someone tells you they did it all alone, good for them. That’s nothing to be envious of. 3. Forgive yourself. The babies love unconditionally and if you mess something up, guess what? They don’t know any different anyway because you’re the only mom they have. They’re doing all this for the first time too.

6.       What do you identify as the number one reason you are an amazing woman and mother? MY VILLAGE!!! My parents, my grandmothers, my extended family, my friends. Everyone who has said “Good job!” “Good luck!” “you’re doing great!” I’m absorb all of that energy like a sponge and it fuels me to keep going.

7. What are you looking forward to teaching your little one? I look forward to teaching Caleb how to celebrate being different because different is not less. Different is special and unique and not everyone is going to understand or accept that and that’s ok. It’s not his job to teach them, he just has to forgive them and move on even if it makes him sad. I look forward to teaching him that anything and everything is possible and that he is special but his best is the only thing I will ever expect, he doesn’t have to be perfect and he may fail but he has to give it his best shot. Finally I will teach Caleb to be kind even if it’s not returned because the energy you give is the energy you get.

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Yaasmin & Samiyrah of Amazing She Is. Please be sure to download the app, get empowered, read up on other Moms of the Month, learn the products that are hot and what’s not and check out my favorite part the Mommy Magazine!

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D-Day….Diagnosis Day

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When I initially became concerned about Caleb’s developmental delays and the possibility of autism I immediately reached out to a sister friend of mine who’s an “Autism Mom” herself. Part of me was hoping that she’d say I was crazy but I knew her and should would never say something either way to give me false hope or to just make me feel better. Instead she would casually say “He might be but don’t focus on the diagnosis.” And in my mind I was like “WHAT DO YOU MEAN?????

I have to focus on it. I have to plan. What does that mean? What do I do if he is? What does this mean for him? His future? What does this mean for me? The rest of my life? How will he get help? I need to make plans and make a budget and contact people! Don’t I??

I didn’t understand how I shouldn’t be focusing on the diagnosis, that is until i caught myself researching Autism service dogs. LOL. I remember texting Caleb’s godmother and telling her what i was doing and she said “Tiffany take a break! Step away from google. We are not there yet.” In that moment i understood that they were both saying “Calm down! Relax! Don’t get ahead of yourself.”

I needed to focus on getting Caleb what he needed at this moment otherwise I would fall down this never-ending tunnel of anxiety and ridiculous decisions and I had ZERO idea what I was even dealing with yet. From that day I didn’t focus on the word Autism. I focused on getting Caleb the services he needed to develop and grow into his potential regardless of any label.

None of the doctors we’d seen had mentioned autism with the exception of his speech therapist who made a note during one of his sessions. Other than that the only one who had that word in mind was ME. This maternal instinct is a funny thing. No matter how hard you don’t want to think/speak it into existence there’s something in you that knows.

On the day of our ADOS assessment (Autism Diagnostic Observation Schedule) I was ready! I gave myself a pep talk and said no matter this doesn’t change anything! I knew in my gut Caleb was different so this was just confirmation. During his early intervention session that week I told his therapist we were scheduled for our assessment and she said “Great! But so what?! If he’s autistic so what?! It just guarantees more services. There is so much more than he’s eligible for in treatment with an actual diagnosis. Caleb is smart and high functioning. He’s a beautiful normal toddler and he’s perfect.” I remembered her words as I got us ready for our appointment. I was ready!!

 

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The assessment would last an hour, it was super informal. Caleb played with toys and ran around. The psychologist grilled Mom and I for a few hours as well as interacted with him. Caleb had no clue what was going on. He rummaged through her bags of toys, using his words like please and thank you and everyone was praising him. The doctor made note of his limited eye contact and his obsessive need to want to turn the lights on and off on us. We eventually had to move some furniture in front of the light switch to get him to focus a little. Caleb also jumped up on the kiddie table to look at himself in the mirror, making silly faces and babbling to himself, he loves a mirror!!! Caleb was very comfortable and in full Caleb mode. I, on the other hand, had a growing knot in my stomach. Every time the doctor would make a note or ask “does he always do this?” I would play it cool on the outside but on this side I was on the edge of my seat.

After an hour and half, the doctor got up from the floor with Caleb and she said “Ok, I’ve completed our assessment of Caleb and at this time I am diagnosing him with Level 2 moderate autism….” She continued to talk about what that was and what it meant but I don’t think I heard any of it. I wasn’t ready and as I broke down My Mom came over to console me, the doctor brought me tissues and Caleb’s social worker moved to him and engaged with a toy. It wasn’t until I replayed the moment in my mind days later that I realized she’d done that so he wouldn’t see me upset and I was grateful.

Although most of what she said was a blur I did focus on what she mentioned as next steps, ABA therapy, follow-up with a neurologist, contact my insurance company. Got it! In the next week or so I’d get Caleb’s official report with the documentation and the referrals but I wasn’t waiting that long. I dried my tears, loved on my baby, made the call to family and friends who’d been waiting and supporting us. Immediately the same sister friend who told me not to focus on the diagnosis sent me this link Different Levels of Autism.

I dont think I ever told her how much that meant to me. The article literally outlined everything the pyschologist had just told us, you know that part I blanked out on..LOL. As I read the article right there in the parking lot while mom and I pulled ourselves together, it all started to come back to me. It also helped to communicate his diagnosis to our family and friends who would all ask in the upcoming days “So what does this mean?” It helped me to not say the words over and over and over again that were so hard for me to hear. After reading the article and wrapping my mind around what needed to be done next, I was back online and back on the phone. I had gotten our diagnosis….now it was time to get everything and anything for Caleb to receive the best treatment.

There’s a meme I always come across online that says “You’re allowed 5 emotional minutes in a day, then you gotta be a gangsta.” It’s the story of motherhood and my life…..it was time to get gangsta.

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One Step Closer

A few posts ago I spoke a lot about being knowledgeable and advocating for your child and that’s exactly what the last few weeks have been about. With the help of a former co-worker and friend I was put on the path to endless resources and it was such a relief, what started out as her sending me a DM telling me how she enjoyed the blog ended up being a conversation that changed our lives.

Just hours after getting a name and number, I was calling the referral line for Early Steps the federal agency offers FREE developmental services for children from birth to 3 years old. With Caleb being 2 years and 7 months, we wouldn’t be in the program long but right away we were assigned a social worker who called ready immediately to set up our in home visit.

Less than a week later she was on my couch giving me piles of information, resources, and hugging on Caleb. She was like an angel from heaven, literally I couldn’t believe all of the things that were available to us. It a little frustrating knowing that we could’ve received assistance months ago but I didn’t have time to focus on that now.

Our initial assessment with the early steps program here in FL was on the morning of my actual birthday and when our service coordinator called to tell me the appointment date and time she said, “What a great gift for your birthday! A team of people all focused on getting your son the help and resources he needs.” I hadn’t thought about it like until then. I’d finally be getting the help we’d been waiting for and maybe some answers in the form of a diagnosis.

Oh and did I mention that this was all FREE?? And when I say FREE I mean FREE, like SUPER FREE! They don’t care if or what insurance you have, they don’t care what your income is, the only thing you need to have when you call to get an appointment is concern for a child. Step 2 is where they assess what exactly they can help you with and that’s where we were. While Caleb got to play, Mama and Gemma answered a load of questions. Lucky for me I had started blogging so my brain was fresh with stuff from way back that I was able to share about baby boy from birth until now. They mostly observed Caleb play, he engaged a little with a speech therapist but other than that all eyes were on him. There were four professionals in the room, including his social worker but everyone was very relaxed which was relaxing for both and me Caleb. The speech therapist and the other person on the team got down on the floor with Caleb, he engaged them and showed no signs of being uncomfortable. Before we knew it 2 hours had passed.

At the end of the two hours we were enrolled in the program with a recommendation for an occupational therapist and an early interventionist who would come out to our home once a week (for each) to “play” with Caleb and give Gemma and I tips on how improve in some of our problem areas, specifically eating/feeding, behavioral concerns, and how to cut back on the iPad (eek!). This was all good stuff, yet a small part of me kept feeling like I had failed at being a mom and now people had to come in a save me. I knew it was just that damn “mom guilt” so I didn’t allow myself to sit in it. I didn’t have the time or the energy, that was all reserved for Caleb.

image1Before we left we were asked if we wanted to schedule an appointment for an ADOS assessment. That’s the assessment that determines whether your child is diagnosed with autism.  Based on an initial screening they felt like Caleb could benefit from being seen. He scored right on the border of low/medium risk of having autism and you guys already know I needed to have confirmation one way or another. This is the appointment I had been waiting for, the one with the waiting list until May. It turns out that the appointment in May wouldn’t have even resulted in a diagnosis. Only a neurologist and a psychologist could diagnose Autism and my appointment was with a developmental pediatrician, I would’ve waited 6 months and we wouldn’t have been any closer to answers had I not found Early Steps. Anyway, I scheduled the appointment for the ADOS and we were just 3 weeks away from answers.

The thing everyone told me NOT to focus on was less than a month away and to say I was overwhelmed was an understatement.

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