Y.A.M.I.L.Y Volume One

Welcome to our first volume here at 

You are my "I love you"

Each month we will be sharing with you our month, in hopes to reach

and relate to others parents raising kids on the spectrum

So Nia & Asis

Don't stumble my little one. You are so brave and never scared. You just try, you go your own way. You have your own path. I love it and it makes me want to be more courages, like you.

Holly & LuLu

My Lulu is my go-to muse when I have an idea. However, the last month or so, she has been shying away from the camera. She hasn't been willing AT ALL. And because she is so sensitive I haven't been pushing her. This month rolls around, and I tell my girls all about The Paper Heart Project to raise awareness for Congenital Heart Defects. CHDs hit home big time for my family. I, myself, am a CHD survivor having had surgery as a baby to repair my CHD. But more visible to my children is their baby cousin who has 10 CHDs and has undergone more tests, procedures and surgeries than most people do in a lifetime. They love him so much, so when they learned about an opportunity to help raise awareness that could lead to increased funding for CHD research Lulu was all over it. She immediately made a heart for her cousin... a happy heart just for him. And she has lots more ideas too. It's the first time in a long time she has been excited about being in front of the camera. In her words... "it will help save babies. And saving babies is the best." I love her kind and giving spirit. It's one of the many reasons she is special.

Meagan & M

The obstacles are real. I want to jump right in surround him in a bubble and protect him; protect him most of all by those who don't understand him. But I don't. I know I am helping him by staying on the side lines, that not jumping in will make him stronger, build his character. After all, "Character is what you are, reputation is what people think you are." Teaching him that it doesn't matter what other people think is hard. Many are his peers. Teaching him that at the end of the day it's your character, who you truly are, despite adversity is one of the most important things in our lives. So I will watch for the side lines as he overcomes his obstacles because he will overcome them. Knowing that Mom believes in him and always will, will indeed make all those obstacles a little bit easier to tackle.

Crystal & Gracie

One of the things we learned early on while raising Gracie, was that her worrying usually always gets the best of her. Going to the dentist is one of those things that can bring on weeks worth of sleepless nights as her mind runs through all the different problems that could go wrong.  

This makes finding a dentist a rather hard task. We need someone who has the time to sit with her and walk her through each step that is about to happen. A dentist who has the understanding that teaching an Aspie girl about hygiene is a lot more challenging of a task. A dentist that is going to make her feel more then comfortable to do all the things TEETH involved. Even down to brushing and flossing, because to an Aspie the feeling of that tooth brush and the floss moving between your teeth can spark a sensory overload. 

We went through all this during our month of January. 

It all started with the mention of changing dentists. We know there is a long road ahead of us with Gracie and needed braces. We really felt we needed to be at a bigger place were they had what she needed on staff, and felt we needed to start making those patient/Dr. relationships long before they start putting 

painful metal throughout her month. 

This is a process that is both terrifying to her and to us as her parents, making finding the right shoe to fit that much more of a need.

Well all you have to do sometime is pray and prayers will be answered. 

We ended up finding a Dentist and geared Gracie up for the transition.

Yes there was a few sleepless nights both due to her worrying and my worrying, but the day finally came. 

I can't even express the feeling we both got from this dentist. They made us feel at home from the minute we stepped in the door. Knowing Gracie and her issues they had everything ready at their figure tips to walk her through everything from how to floss her teeth so it doesn't feel too icky to what tool they were using to clean her teeth, to what x~ray for her braces they were doing, and even a t.v set up to her shows for her to watch on the ceiling. She came out of there after 2 hours rhyming off dental terms like she was the next dental assistant. ( yes this amazing dentist did not push us out, rather kept us till we were comfortable ) 

Needless to say we had a HUGE victory that both her and I never thought we would happen. 

Melissa & A

A's developmental delays and sensory issues qualified him to go to preschool and receive his therapies there for free. Which means that I get to watch the adorableness of a preschooler getting on a bus on school mornings. Well, it's adorable now. At the beginning of the school year, he had a really hard time getting on and staying safe on the bus. But now he loves it and it's adorable.

Ellie & C

CAMHS days.. AKA.. “Worst day ever” days. Mid January we had a CAMHS visit (Child & Adolescence mental health services). This was a long awaited appointment from nearly two years ago.. the current appointment system there is shocking. With cancelled appointments due to sick staff, no staff.. (and pure incompetence I’m sure) it was just one excuse after another, the place was mid over haul last year so we were hoping for improvements this time round. (Many Uk’ers with dealings with CAMHS I have no doubt will know exactly what I mean.) This particular appointment was supposed to finally be for some support for his self harming. Previous begging attempts for help had only resulted in the advice of.. “Put a pillow under his head”. Of course.. It wasn’t to be however. A new psychologist meant starting over from the beginning AGAIN. The appointment started 30 minutes late with the lady calling T by a completely different name.. and asking how his ADHD & medication was going.. He doesn’t have ADHD. He certainly isn’t medicated for said diagnosis he does not have!

GREAT START! Flipping quickly through his HUGEEE file she laughed and joked that we had seen in excess of 11 professionals, and laughed we probably wouldn't see her again after this appointment. (I can’t say I saw the funny side.) Once we established his actual name and diagnosis she asked me what we wanted from today.. (I did chuckle to myself wondering if they will ever openly offer what they have available.. one day perhaps.. I won’t hold my breath) I explained I hoped for help and support or therapy of some kind for his self harming. However she proceeded to ask T questions.. "how do you like school?" "whats your favourite lesson” “What lesson do you not like” etc.. He took to hiding behind the chair, did his usual grunting replies and refused eye contact. He eventually came out from behind the chair and played with the toys whilst she questioned me over his self harming instead.. he was however listening despite me explaining he would get upset so perhaps a conversation for another appointment when he wasn’t there?.. she then asked him why he does what he does when he gets angry… He cried. Was this a deliberate attempt to bring on his SH ways? Or a very stupid mistake on her behalf.. I don’t know but I tried to explain this wasn’t always an anger issue but mostly from what I could see tiredness.. frustration and anxiety. She asked me if he was laughing.. No he is head butting the chair and crying! To her credit she apologised to him. Too little, too late.

I felt I was going around in circles again. Its an awful heart wrenching feeling when you have to explain Autism and what it entails for your child to a professional who can’t even get your child’s name right. I gave up on the appointment when she made him cry. I left the office as I always do but had hoped I wouldn’t, feeling .. deflated. Yet again we are stuck on our own. As soon as T walked out of her door (with her following behind us) he said.. “I don’t ever want to speak to that women again”.. I must have stood bug eyed for a moment but thought.. he’s saying what he feels and that in itself is a small miracle. She had upset him and he absolutely did not have to speak to her ever again. Her face was one of apology and shock I think. I carried on walking. We had clearly both had enough.. On the way out of the building he repeated that line about six times. A little pick me up was clearly needed. So we went and spent an hour in the book shop picking new books as a treat, with him telling me it was the worst day ever. (Queue the guilt for another day distressing my child for what?!) Although we hadn’t really been out long, the upheaval of his routine, the overwhelming anxiety from his morning appointment with a stranger had taken its toll. T is one who craves routine. He needs it to cope and manage himself. T was tired and spent the afternoon under his duvet with his new book torch and books. Exhaustion evident on his face. That place leaves me with indescribable feelings.. A mixture of hurt.. but knowing you were going to achieve nothing anyway.. being proven right again but wishing you hadn’t been. Also leaves you with a sense of longing.. longing for someone to just listen.. someone to say.. You are absolutely doing the right thing.. for someone to say.. I am here to help. This service is supposed to be in place to help children with these kind of problems. Where else is there now? Who do you turn too when all services have been exhausted? When an act such as self harming is so beyond the realms of normal child behaviour you question everything around you and especially your parenting. Am I managing the episodes.. correctly? Is there a correct way? Am I helping him in the long run.. Will his current level of self harming get worse with age.. The questions and the thoughts only get darker and more distressing. For now T’s Dad and I will of course continue to deal with these episodes the best way we know how. That seems to be prevention. Sometimes we miss the signs and sometimes there are simply no signs but we will continue to strive to help him and make sure he knows him and his brothers know they are so completely and utterly loved regardless of their difficulties.

Y.A.M.I.L.Y Introductions: week three

We are still working away at our introductions of our admin team. 
This month we have been choosing lines from the poem, You are my I love you, and talking about how each line fits our parent child relationship. 
This week we have one more admin up with an introduction.


"I am your your calm face; you are my giggle.“ So Nia & Asis

Asis has the most contagious smile ever and the most amazing view on life. I have started a book where I write down all the amazing, silly, funny, and very interesting, deep things he says. I adore him for who he is and I wouldn’t want to miss a single minute with him. He needs his routine and meltdowns and many people in a room can be quite some stress, but all the deepness he has and brings into our family with his sweet soul are totally worth it. We think that he is an Asperger. It hasn’t been tested, but as it runs in the family and his behavior fits we decided not to test him. Our doctor says that if we have the right strategies and we know how to deal with him we don’t have to undergo all the testing. He started school this year and has very good teachers that help him deal with his strong emotions (he is either really happy, really cuddly, really sad or really angry) Therefore it is really important that he learns strategies that help him how to deal with other kids. I am happy he has that safe place and good teachers that I can trust so that he can develop better social skills. I am so in love with his personality that I can’t wait to document and show a bit more about his amazing way of seeing life.

Y.A.M.I.L.Y Introductions: Week Two

Welcome to another week here at You are my "I love you"

We are spending a better part of this month choosing lines from the poem

You are my "I love you", and talking about how that line fits best 

with our wonderful kids on the spectrum.

Don't forget to drop by our FB page and post to our wall

what line fits you and your child. 

"I am your quiet place, you are my wild" Holly & LuLu

I’m Holly from Holly Nicole Photography. My middle daughter has always been one of my inspirations. She is my muse in my photography and a light in my life I wouldn’t trade for anything in the world.  

Let me first say that she hasn’t been diagnosed with anything yet. We have suspected she has Asperger’s for quite some time. I won’t bore you with each and every behavior she displays that has led us to this conclusion… I’ll save some of that for another post. Let’s just say that if you look online and go down the list of symptoms, she fits the description to a tee. I’ve also spoken to other Aspie mom’s and sometimes hearing their stories makes me feel like I’m talking to myself. I trust my gut, and we will be getting a formal evaluation soon. Her teacher also agrees with me that she displays Aspie behavior (he has experience teaching kids all over the spectrum) and has developed some wonderful strategies that have helped us see a ton of improvement in her behavior both at home and at school. But her grades, as always, are stellar and academically she excels so we have dragged our feet getting her evaluated. Now we are ready, not so we can change her, but so as she gets older and the hormones kick in, we can be ready to help her in any way we can to tackle life and live it to the fullest. 

"I chose I am your quiet place, you are my wild” as my line in the poem because anyone who knows my middle knows she is a wild child. She is in your face, no holds barred, the loudest kid you’ve ever met. She doesn’t understand when it’s appropriate to be wild or loud and just lives life in" Lulu Land”, as we call it. She marches to her own drum.  The “Wild” in the poem can be both good and bad with her. She can just be wild and all over the place, or she can be wild in her melt downs when she can’t process her emotions. Either way, I am the one she can turn to. I will hold her and calm her. I will guide to act the right way when she can’t understand what that means. I’m her constant, her rock, and she will always be my wild at heart.

"I am your water wings, you are my deep" Ellie & T

This is my youngest son, T.

T will be nine four days after Christmas, he is diagnosed with Autism, ODD, and has SPD and APD.. He is also a self harmer.
T was diagnosed after a long fight in July 2013, he's a "complex" child that fits into many "boxes" so they struggled to find the ones that applied to him most but we got there eventually.
T now attends a special needs school after barely managing part time attendance in a mainstream setting. He adores his new school and they adore him right back. He is now thriving after 3 very long years struggling.
T is an avid reader, he LOVES his books.. after many years being unable to read it seemed to suddenly click with him in his last summer at mainstream and he's been reading well above his age ever since. He loves Minecraft and his Xbox! (Don't most kids?)
So for my chosen poem line, I selected.. "I am your water wings, you are my deep"..
I chose this because this kid is attracted to water like a magnet! (Although he HATES water on his face and head with a passion!) They say autism and water go hand in hand and I am inclined to believe it. He is in his element playing out in the rain, esp with no socks, shoes or jumper on! (Queue the freaking out from me that he's going to catch his death doing so!) and if he's not outside he's indoors at the sink playing instead.
He is my deep.
I guess where he's my 'baby' I fret about him a lot more than I probably do his older brothers, he's a deeply intriguing boy and I often find myself wondering how life looks from his perspective. He has such a literal sense of thinking then some days he will "get something" even perhaps I didn't.
I could talk forever about how life is for T and us as a family but for now here is my chosen photo for T. Water guns aren't just for spraying.. But drinking too.. wink emoticon

Y.A.M.I.L.Y Introductions: Week One

   As I woke up this am it hits me how excited I am to launch our very first collaboration. Seeing this come together has been a long time dream of mine. 

I have spent hours searching page and group for kids on the spectrum, and YES there is many out there, but none that fit US. None that I could take my love for photography, my love for documenting our lives and share through my lens as well as through my lips, the challenges, the victories, the stresses and relationships. I wanted a place to be able to reach out to other parents and have them reach back in the same way. I wanted a little Y.A.M.I.L.Y ( you are my "I love you" ) and I have found it in these 6 wonderful ladies. I have heard their stories, their raw & honest stories. I have shared theirs cheers and I have shared their tears, and now we want to share it all with you. So without further ado I will get this first introduction collaboration started. 

"I am your nightlight, you are my sunshine" Crystal & Gracie.

      Hi, Crystal here, and my oldest girl Gracie. We both picked this quote together, WHY because then that way if gave Gracie a little control over the situation. Control is our lives with her. Since she was little we know she was a head strong little girl, but we also noticed she was an amazing little girl. She would at age 3 put colours into rainbow patterns. The older she got the more the control and being in the familiar overtook her. She needed a strong structure, and she needed to feel like she has some kind of control over her environment. There were other things we noticed along the way too. the sensitives to light, sound, taste, touch and smells. The way she would miss out on social ques, and many other things the list could go on and on. So make it simple that is when we started looking closer at the spectrum, and the first stop we stopped at was Aspergers. My husbands brother has Aspergers, and we knew from research that it genes are very heritable. That is when we decided to jump in and get her looked at. That was when she was 4. At the time we were told she was too young to determine for sure, and the fact that we had already self diagnosed her and been working strategies so well their was little need for an assessment. Now fast forward 6 years and we are currently working through the developmental process. You see we did our best. We used those strategies, but nobody told us how much that would change along the way. How much more that control would take over and turn to anxiety, how much more the social cues would still be missed while all the classmates around her are developing social skills every day. BUT I also was never told how much this little girl would hijack my heart. How much she would change me, teach me and make me a better me. How amazing those victories would feel after a long struggle. How much pride I would have in one child for overcoming something I have seen adults crumble to their knees over. Along with all those points above that make her diagnosis, there is also so many points that make her the most wonderful person I know. Her creativity inspires me everyday, her logic leaves me thinking new thoughts, her ideas gives me a new path to take. Her heart shines brighter than anyone I have ever seen.

   This is why we picked "I am your nightlight, and you are my sunshine." Because to Gracie, I am her night light. Night is always been a time when she needs me to be there for her the most. Night is when all those thoughts and anxieties from her day come to confront her. That is when most of all in her life she needs me to be the light in her darkness, the comfort in her worry. The person to talk her down off the ledge over something we might just shrug off. I have many nights sitting in the glow of a nightlight, walking her through her day. But I would not EVER take back one of those nights.

     For me she is my sunshine, she is my happy when my skies are grey. She is my light in the day to day. Even though she lacks empathy during an anxiety meltdown, she has more than enough left over not during a meltdown, for when she sees someone having a bad day. Not during a meltdown, she is warm, kind, and sensitive to your emotions more then you are. She has pulled me aside numerous time to tell me she feels how I am feeling and knows I just need a hug. And that my friends is the greatest thing when your skies are grey, we all just need a hug every once in a while, with some conformations that someone knows how we feel. She makes my every grey day, full of sunshine. And don't worry, I turn it all around on her at night and I am the one offering comfort and hugs. 

"I am your favorite book, you are my new line" Melissa & A

                                      

Hi! I'm Melissa. My middle, A, is three and a half years old. He has sensory issues and development delays. I could continue writing about what his sensory issues and developmental delays are, but if there is one thing I hope to show, it's that he's so much more than that. Yes, we may have to approach parenting him differently. But that's okay. And we are learning together as a family. I have learned from him that there is beauty in documenting the hard times and the victories and everything in between. That is why I really like the line "I am your favorite book; you are my new lines."

In my selfie image, I had just finished holding him for a sensory meltdown that had lasted about 30 minutes. He had finally started to calm down as he rested his head on my chest and listened to my heartbeat. As hard as it is to have to handle sensory meltdowns, I will face it with him. And I will be his familiar place and comfort after. Always.

In the image of just A, he had tried to spit on the ground (I blame his older brother for that one!) and he happened to get some on him. One of his biggest sensory meltdown triggers is when he gets wet when he just shouldn't be. But instead of losing control of the situation, he decided to handle it and take his shirt off. A victory. He discovered a solution to the situation that helped him keep control. And I'll take it.