Tuesday, February 26, 2013

Regression due to loss...our experience

As many of you know, June 11th, 2012 was a day from hell for me. I gave birth, in the ER, to my still born twin girls. That day will NEVER leave me. It breaks my heart, every time I think about it. EVERY SINGLE TIME!

That date, also has another BIG significance to it. It's the day my daughter had her BIGGEST regression of her life. We thought it was bad when at 20 months she went from having a huge vocabulary of an ADULT, to not speaking at all, literally over night. But June 11th, put that day down as a nothing.

I remember it all too clearly. I birthed my twins at 12:02 & 12:04 am. My husband picked me up from the hospital sometime around 4-5 am, with our daughter. He had stayed home with her that night, so she could sleep. I had gone to the ER via ambulance around 8 pm. We didn't know what was wrong.

Around 11pm, my daughter had woken up, went in to lay with my husband and he knew, she sensed something was wrong. My husband was suppose to leave for work at 4:30 am, so the simple fact that he was still awake, alarmed her. As did the fact, that I wasn't there. I do ALL the night wakings when my husbands asleep.....I wake a LOT easier then he does. Anyways, she sensed something was wrong, my husband laid with her, trying to cuddle her and get her back to sleep. She wouldn't sleep. She KNEW something was wrong and she was very tense, very agitated and very upset. Nothing would calm her down. My husband assumed it was my absence  Only later would we figure out that it was due to the fact that she knew something bad was happening. She laid awake all night, in my husbands arms, till I called him to come pick me up from the hospital.

When he got there, my daughter was in her car seat, wide awake with a look of shock in her eyes. It was evident, that I had been crying. She uttered one word....one simple word, that would be the word to change our worlds. "Babies?"

She knew, they were no longer in my uterus. But she didn't understand why, if I had them, they weren't coming home with me. To this day, nearly 9 months later, she still doesn't understand why they aren't here. We remember them, we treat them like family. They're in our minds, our hearts and nothing can change that. Last summer, my daughter wanted to hold a balloon release ceremony for her sisters. We did it the day after their scheduled c-section date. This year, we will be doing 3. One on the day they were born, one on their c-section date and one on their due date. May seem excessive, but for my daughter, its like buying a toy to give to her sister. Each baby gets her own balloon and my daughter writes or tells us, as best she can, what she wants it to say. To me, that means the world!

I know my daughter would have been an amazing big sister. She would have been a huge helper for mama too! But alas, she will never had that chance. With Autism, the worlds a different place. A lot of people have autism dogs, we have an autism cat. When I say that, what I mean, is that what autism dogs do for MANY people, is what this cat wound up doing for our daughter. D, is what we will call the cat for now. She's got a special name thats significant to my family and my daughter, but on here she will be D. Her birthday date, was actually the day I was schedule to have my c-section for the twins. Our daughter had always wanted a girl cat. We had two boys. She wanted a cat that was HERS. She could name it, she would be in charge of feeding it and giving it water, playing with it, all that (minus the litter box!) When I found these cats, it was perfect timing, they had just been weaned from their mother, they were 12 weeks old and after a horrible experience with our local humane society, that truly CRUSHED my daughter, we found these kittens online. Farm cats. Ready for forever homes. We showed our daughter a picture and it was the end. She fell in love with a specific one and the next day my husband and I went to get a kitten. Our daughter didn't know and she was at school. We drove over an hour out of town, into the country to FIND this farm. Praying that the kitten my daughter had chosen from the photo was still available as other people were picking up that day as well. When we got their, we got to meet the kittens, and the first one to come to us, just happened to be the one in the picture my daughter wanted. It was a sweet kitten, very cuddly, nice, and it struck us as the PERFECT cat!

It was fate, that D came into our lives. She's been a huge help for my daughter. She has helped greatly with slowing the regression, albeit, the regression is still there....she's not getting better, but at least she's leveled off, thanks to the kitten!

It's been a long hard nearly 9 months....I have worked my butt off, to get her back on the track she was one. Now I have made some amazing new contacts and I am working on getting the HELP she needs! As parents, we want to solve all of our kids problems and situations, but the reality is, when you have an autistic child, that's not possible! You need help! You need doctors, specialists, therapists, and more! You also need to NOT be afraid to ask for that help!

So far, this is a bit of behind the scenes of our experience with Regression due to loss!

Monday, February 25, 2013

When speech comes and goes

My daughter, she's considered "non-verbal". Some days, she's got words spilling out of her with no way to stop them! Other days, you can't get a word out of her! It's a much frustrating process, I will admit that, but its a rewarding process. When you hear a full sentence, out of the blue.....you realize, shes been listening, she IS paying attention, even when she won't make a second of eye contact with you, won't reply, acts like you are NOT there!

As a mother though, the most REWARDING times of them ALL is when she pops out this huge word, that you have no clue how she got it in her vocabulary, let alone knows how to use it correctly. For instance, we had my dad's truck off and on these last couple months. In the back seat is the dogs cage, its easier to just keep it in the truck then move it out every time we need to take the truck, because its all secured in their to keep the doggy safe, when she's riding with them! Anyways, the point is this: My daughter's car seat sits in the middle of the back seat. It's my rule, if she can't be in the middle then shes behind the driver, I never put her behind the passenger seat, its the most dangerous place. Not the point though, I know!

Anyways, so my daughters seats in the middle, the dogs cage is secured in behind the drivers seat. Simply because thats the seat that goes down on its own. The other two seats have to go down together and then you can only have 3 people in the truck instead of 4 when the dogs in there. So, she was sitting in her seat next to the dogs cage and out of the blue stated: "Barbie's dog cage smells HORRENDOUS!" REALLY?! Both my husband and I were shocked into silence, we asked her to repeat herself and she did, much quieter this time and with a look of fear, but when we smiled at her, she smiled, like she was proud of herself or proud of the fact that WE were proud of her!

Sunday, February 24, 2013

A Journey like no other

The journey through life, with an ASD child, is like no other journey, you will ever encounter. It has its ups, its downs, its frustrations, angers, times where you literally just want to scream at the top of your lungs. Their is good and bad in ASD, just as their is anywhere in life. With ASD though, that sometimes just means its amplified a LOT!

My daughter is going through repeated specialists to figure out exactly where she is on the spectrum and why. We have referrals currently to 7 different people. Talk about frustrating! And NONE of them are in our town....all are about an hour or longer drive away.

My daughter has severe anxiety. Does NOT travel well. Get's motion sickness. Get's sick to her stomach due to her anxiety. Has a major fear of doctors from some previous bad experiences. She's got a mile long list of allergies, that effect a lot of aspects of life. She's too underweight, so therefore is still in a 5 point harness car seat (which is an issue for her because of the areas that the harness touch & her VERY severe sensory issues). I could keep going on, but I am sure you get the point.

A is 5. She's had a SHORT life with a LOT of problems! A lot of struggles for someone SO young! ASD is just one of a multitude of things!

Some days are great, some days are horrible. Some days are filled with smiles and "new" things! Some days are filled with tears (from both child and parents) & screaming! Some days are filled with cuddles and some days your pushed away because she can't stand to be touched. Some days she will eat and some days you fight to get ONE SINGLE BITE IN!

But, putting all that aside, one thing is for sure every day: the journey through that day will be NOTHING like anything you have experienced before.....it'll be so completely different then the day before or even the next day!

The journey with ASD is a journey like NO OTHER! Join us as we continue you our journey and make the changes we NEED, to make a better life for A! Welcome aboard the ASD train in our house!

Blessed, encouraged, supported!

Yesterday, I had the extreme honour of attending to the Autism conference. It was an all day conference. Registration and exhibits started at 8am & the conference ran till 5pm. It was AMAZING! I got some incredible information, great sources and I met some of the most awesome people ever!

****PLEASE NOTE: I was not asked to review this conference, I will not give our names of people or share their stories. I will not be posting information from that conference, I will just be sharing MY personal journey and experience during that conference and now that day following! The things I learned and how I feel NOW after learning all this about being my daughters advocate! Please be respectful of the fact that I am being respectful of everyone there's privacy. Thank you!****

The world of Autism, despite being in our lives since our daughter was born, is something really new to us still. We had years and years of a pediatrician stating to us, "oh that's normal", "shes fine", "you're over reacting", "you watch too much tv", "you read to much books or information on the internet, you can't always believe what you read!". The list goes on and on and on. 5 years of that. Being told I was "over-reacting". I was a "over protective mom". That I had "no clue" what I was talking about.

Not just as a mother, but as a human being, I strongly believe that the saying "Mother knows best" is correct, 99% of the time. For those of you that don't agree, think of it this way (it could also be said that father knows best depending on the circumstances but I am referring to my personal experiences! No intent to exclude anyone or make anyone feel bad), if I as a mother am home 24/7 with my child. I see their reactions to food, clothes, the environment, any changes to her schedule, problems at school (this ones still relatively new as shes only in senior kindergarten), her reactions to people (daddy being gone, people visiting, etc), her actions, her reactions to noise, her habits, and all those other things that happen during a day....do you not think that I as a parent, know better then a doctor who sees her when shes sick or her once a year check up? Who see's her for less then 5 minutes and then is out the door? Sorry, but darn it I KNOW BETTER THEN THE DOCTOR!

Yesterday, for me, was the experience of a lifetime! The talks, were incredible. The vendors were awesome, informative and generously helpful with their stories and information. The people I met, well they were another story. I have never ever met such an incredibly inspiring group of encouraging people! Honestly, it was just breath taking, the whole day. And not just because I got a full day out of the house, by myself!

I left that conference, with a new found attitude, a new found spirit! I felt like a new person! I will forever be thankful that I got a sponsored registration, because I would not have been able to attend without it.

The speakers: WOW! They brought light to things I had NEVER even THOUGHT could be related to autism. Could be part of the cause. One woman shared her story, she had me in tears! Another one talked about the products that we're using to "keep us healthy" and keep our homes cleaning, could be making matters worse. (After that talk I will be making some HUGE changes in my household!!!!) I met some amazing people who are HUGE supporters of Autism, fundraising, advocating and more!

Today, I woke up, after a rough night sleep. (More so then usual). I was up off and on all night thinking about the overwhelming amount of information I took in yesterday! About the amazing people, the encouragement.

As a mother, I felt guilty ALL day being away from my daughter, don't get me wrong, I know I can't be there for her ALL the time, but it was hard to be apart from her and I felt VERY guilty! That being said, I think I learned a great deal about HOW I can be a MUCH better advocate for her, take better care of her by watching what she uses, what we clean with and more!

So, I bet you're all wondering what instant things I am going to be doing? Well, yesterday was so information packed, that its HARD to do it all at once, HOWEVER, some things I can change right away are: laundry detergent----I got a bag of soap nuts, which is enough for 300-400 loads of laundry....thats about a year and a half worth of laundry for the average family! I got a brain game that I plan to use for the whole family---its got 4 levels so we can ALL take part in it! I got some awareness pins, clips, necklace/bracelet pieces, magnets, etc. And I got some great new books, so I will be looking into those asap! Oh and I got some allergen free cake and waffle mixes, that I plan to try! I normally make everything from scratch but I am going to give these a shot! Those are my starting points!

I came home from that conference, bursting with happiness. With new found knowledge! It was incredible and I feel so blessed to have attended! I plan to take a lot of what I learned there into affect in my home and my community. Join me on this journey! I will be posting more as I gradually make these changes!

Thanks for reading and please, if anyone was at that event yesterday, I hope you are not offended by my post. I wanted to keep everyones personal information private. This post is just what I learned and am going to do, to help my family! Thanks!!!