Labels

Labels are interesting. When the boys were first diagnosed I struggled a great deal. Many parents struggle with a diagnosis because they put so much stock in that label. They can be detrimental to some and I went through that too. At first I didn’t want to face that when I was still married…… “ no they’re, no they’re not….they’re fine.. they’re fine they just need more time” but then I got them out and safe and they were still not neuro-typical.

            (I will also address my boys as Dino for my oldest and Zombie for my youngest as it’s their favorite things on the planet.)

            Dino was diagnosed first in spring of 2015 and I was desperate by that point then Zombie was diagnosed after he turned 3 in the fall of 2015 I was ready because I had just gone through all of this with Dino.

            I often felt very overwhelmed because I had never been a mom before let alone how did I help them? I was very hard on myself in the beginning; “What do I do? I have no idea what I’m doing, I’m not equipped to deal with this. I need help! I’m not good at this, this is crazy this is insane, I feel like I’m losing my mind. I’ve ruined them…This is all my fault. I should’ve gotten them away sooner….I’m a horrible mother. I’m a failure “

            I questioned every decision I had ever made. I thought I was a horrible parent. I listened to and put those same judgements many others put on me and I beat myself up over it for a long time.

            Then once they had been diagnosed and I was on the path of getting them the services they needed. That path was a god send and saved my sanity.  Everything changed over time. All of a sudden when you have a label on what is going on, everything doesn’t necessary get easier but then you find yourself in this amazing support system and services. When I felt like I was thrashing around trying not to drown in a giant sea storm holding on to a piece of wood, a little piece that barely kept your face above water, like maybe a 2x4. I was so grateful, all of a sudden the boys had Habilitative Interventionists, Habilitative Supports, Speech and Occupational therapy. They not only had seen these types of behaviors before but they KNEW what to do!!! They had advice, strategies, communicative boards and pic boards, etc.  It was AWESOME and at a time when I was just in a haze, I never would’ve thought of half of it even if I had sat down and read book after book after book. In the current state I was in, that wasn’t going to happen.

(pics from 2014 summer before I left)

            It was a HUGE turning point then I got them into counseling and the changes continued. It’s crazy, I even have to remind myself of what it was like back then. They’re so full of life and joy! I don’t know how else to make an impact: my boys barely smiled, it was really just a grimace. It was the same “smile” I had when I was trying to look happy in my marriage. After they had been away and safe they started to smile more and more. Now their smiles are near to bursting with impish, crazy joy. I’m so proud of their resiliency in all this. To see them really smile makes my heart just swell even when we have funky days.

(2016 pics) :)

            The funky days are when labels can blur for us. I admit this freely, I use the labels despite  believing the boys can overcome and adapt the hardships they have. I fully intend to teach them how to cope with their world so they can go to college and be funny and amazing engineers. Having that said, our day to day lives can get hectic and I get stressed out beyond reason and frustrated with the boys but on a larger whole; other people.

            To see them on the street you’d never think my boys have been through any of it. There’s no scarring, no obvious physical ques or ticks, no giant permanent marks and for that I’m grateful. The few physical scars I have are enough but going through our day to day lives gets hard for me and I fine myself internally sighing a great deal.

            I walk with other special needs parents on a path that is judged every step. The longer I have been at this the more I have developed the “tune out” muscle to the judgmental stares, comments, and deliberate puts downs in public. I have listened to people tell me how I don’t know what I’m doing and how I should be parenting my children. I’m an irresponsible parent or a dictator. I have heard many times that all they need is a good swat or some such archaic ideal and that would cure my kids. It all hurts and I grit my teeth because I don’t owe these people anything.

            They don’t deserve our story and here in lies the label dilemma, I get so tired of the many ideals and perceptions thrust upon me that I use the words Autism Spectrum Disorder, Sensory Processing Disorder and PTSD like a shield because within seconds those judgements don’t disappear as much as change into a look of pity I’ve come to loathe as much as their judgments. This is a dilemma I have every day; when we go to the store, park, mall, event or even the hiking trail you’ve thought you timed well so no one would be out there….  -_-

            It was easy in the beginning to become more isolating and independent so I didn’t have to constantly apologize when Dino walked into someone or bark word of warning about personal boundaries to Zombie who will hug everyone especially the people who don’t want them. It’s not fair to the boys to try and avoid these places because we all have to learn how to cope and they need my example in those times. This is the part of parenting I didn’t know would weigh so heavy. The responsibility to not only teach them and guide them but also be the example in actions of everything I say. So we walk with our heads high and I take them to different events and things because it’s not fair to deprive them to save my own personal feelings or because other adults who should be able to handle it with grace fail to do so and overtime my “tune out muscle” has gotten stronger.

            I’ve taken Dino to the Color Run and the Insane Inflatable 5k the last 2 years because I want them to not only have everyday experiences but I want to teach them that they can do it. Zombie will be joining us this year if I can convince my brother to come because until they think it’s hilarious to split directions and in a large crowd that gets a little complicated.  >_<

            It was huge to take them to so many fun things the last 2 years and considering where it started you have to admit, it’s pretty cool.

            I’ve learned so much in the last 6 years and I will continue to learn as the boys move to each new milestone. I am grateful to my kids because they saved me. I’ve always heard in the last 2 years that I saved my kids but I disagree.

            Yes, I got them out and away but what people don’t understand is that when you’re stuck in the survival mode. You’re not thinking clearly and you’re just doing the best you can in a horrid situation after you’ve been broken down psychologically and emotionally so much that the normal standards to others are luxuries you haven’t known in years. I came home in October of 2014 to find my ex half choking/half shaking Dino. I walked in the door at 12am just getting off work to hear my son screaming. I had never heard him make that sound before…I dropped my stuff and ran to his room and just gaped when I found my ex over him on bent knees shaking him and yelling at him “why won’t you talk”. Dino was 3 and half years old…That moment seemed like an eternity then I got him off Dino and shoved him out of the room. I sat against the door with Dino in my arms, crying as I comforted my son and calming him down. So many things went through my mind that night but the key point was “Enough, I’m done.” That night I broke the cycle and I took the kids and left.

            It was that catalyst that has sparked an ambition and determination in me that has changed me forever. The catalyst of refusing to let my kids go through that was a turning point for the rest of my life and theirs. My boys saved me that night because had that not happened, I can’t honestly predict if I would’ve ever left or gone through such an extensive rebirth. I go through great pains to never use the labels in front of the boys or I cover their ears because the point in all this is: I won’t ever let the boys think of themselves as a label because they are unique, amazing and resilient little men I love. I have learned to look at the world and my own body with greater respect and wonder. It has given me a unique perspective that I get to share with other parents of special needs because we’ve had to adapt and grow along with our kids.  They have taught me lessons about myself I didn’t know I needed and I will always be proud of all they have accomplished and all that they will do in the future.

Patience and Parenting

So parenting can be challenging! We always want to save our kids from the pain and hardships from this life but in all honesty, we can’t. They have to learn and grow on their own, after all.  We’re not making carbon copies of ourselves but guiding and helping them as they grow into who they are, teaching them the values of being a good person  and that they can accomplish their goals in life.

Watching and supporting the boys has been multifaceted, at times it’s so hard watching them struggle it makes my heart bleed then at other times I see how loving and wonderful they really are and my chest swells with pride and love.

They first started as what I can only describe as little tarzans. They were non-verbal until the end of 2015 spring. My oldest was 4, my youngest was 2 by this point and we had been through quite a bit. The boys saw and heard more than I ever realized.  They were diagnosed with PTSD, generalized anxiety, Sensory Processing Disorder, Global Developmental Delay, Speech Delay, and ASD in the summer of 2015.

They would scream, throw toys, hit, pinch, bite, spit, throw themselves to the floor, hit themselves, headbutt, etc. They really didn’t play with their toys, they would more or less hit stuff together or throw toys as their play. They never played with each-other and fought constantly. The best way to describe it in terms you can picture is that in an average day, if they only threw, hit, kicked, headbutted, punched or slapped me 15 times in a day via tantrums..that was a GOOD day.

I remember one of the first turning points for them was after I had started my oldest with services to help him work through his PTSD. He has what I can only describe as miracle workers: Habilitative INterventionists and Habilitative Supports that will take him out into the community and work on self regulation, coping mechanisms, support and supervision as he learns and grows. My dad once asked me what exactly they do and my response was: They help civilize them! Or rather, everything to ensure he can grow and develop in a healthy way. I also signed him up for counseling. I was ecstatic to find a counselor that would take a nonverbal child, Chad Hansen, is a god send for us.

The road of healing progressed slowly. The boys were wary, it’s like subconsciously we all waited….thinking that the peace was short lived but as weeks turned into months we all breathed a little easier then we started to change.

There were times when my youngest would pick up a crayon, chalk or pen then walk towards the table or a wall and my oldest would literally freak out and tackle him to the floor. The first time I saw this I cried as I rushed to separate them.  I couldn’t understand what my ex would have done to inspire such fear.  After reading online and talking to his staff and counselor, we all took great pains to teach him that drawing, art and everything was okay and he wouldn’t be punished. I would catch him before he got to his brother and hug him repeating over and over “It’s okay for you and your brother to draw. I promise no matter what happens mama will always love you. It’s okay, breathe honey” I lost count how many times I repeated this mantra and many others like it in our lives but it worked. I always have had to be very conscious of how the boys view my reactions to everything and it’s helped me become a better example and show them that I love them and they are safe.

He still had many issues with self regulating his anger. When he would rage and scream we had to move ourselves away from him and let him calm on his own or put him in his room where he was safe but couldn’t get to me or other caregivers. Eventually we incorporated “blowing out his candles” where his counselor, myself or his staff would hold our hands up and have him blow out his candles. It took quite a long time but eventually he started to breathe through his frustration and I always did this myself when I would get frustrated. I made a point of saying, “mama is going to blow out her candles, I am upset” so they would both see that breathing was a better alternative and that I didn’t expect them to do anything I wouldn’t do by example.

Once they got the beginning of their words it was just amazing, after years of never having him talk to me he was trying to argue, debate, tell us about his dragons, tell me about his day. There are times I almost forget how it all started because of the growth and accomplishments my boys have made. My youngest still has his own dialogue to a point. He deletes the of of the word constants but he’s making great progress. My oldest now speaks from 2 up to 6 sentences to me. He loves to debate why he shouldn’t go into timeout or why he should get 2 cookies instead of one.

They play together, make up stories, gang up against mom in wrestling but the biggest thread in our lives now is happy. Their smiles changed as much as their behaviours. They’re “normalizing” and fighting like siblings do rather than treating each other with indifference and violence. Now they bicker over who won the race..I know to some this may not be huge but after the last 4 years of our lives...these are some of the best times. They laugh, cry, whine, sing, sneak, play, draw and talk everyday now. Our weeks are full of my school schedule or work, their speech and occupational therapies, counseling, HI & HS services and I’m planning on horse therapy this summer because no matter how crazy and busy it keeps me it’s all worth it because they are changing and learning more and more everyday.

So no matter how much you may feel overwhelmed by the stresses of everyday life always remember to do your best everyday and give yourself slack. Parenting isn’t easy and we all have our bad moments but as long as we move forward and reinforce the positive with love understanding and patience. We can do it, 1 step at a time because that step turns into 1 day then a week, a year then 2 years then we look back and look with awe as we realize we did it and we can keep doing it. One step at a time. :)