Friday, April 26, 2013

The Lament of the IEP for the Third Time...

Its not a big secret that IEP has a resonating sad ring to it. As it means your child is struggling in their academic life. It brings to the table the many fights you will have with the school over what you feel they need to be working on. The stress of wanting what is best for your child. Its enough to make any parent have panic attacks.

As I write this, all three of my children have IEPs. Every year, separately, I go in to hash out the goals these children will have to work towards. I won't lie that it stings. Makes me what wonder what on earth is in our genetic code. Or what We as parents should have done differently. No parent wants to see their child struggle, at anything.

This last establishment of an IEP, I think stings more, because I know he understands. As I see the pain in my child's eyes, when he doesn't think he is good enough. When he compares himself to others. When I see the frustration in his face, when something simple things trip him up. I see this child beat himself up when he is the last in the pack. I want this child to feel that he is good enough. He is smart enough. I want him to know that he is strong enough. I want him to know that he is a fighter. A good one. One that looks at these challenges in front of him and thinks to himself.. " I got this. I can do this." I want to encourage him that he is wonderful, funny, smart and loved. I want him to see past his difficulties and not let them consume him.

As a parent, I want the best for my children. As most parents do. Its hard as a parent to fight that urge to jump in with a magic wand and fix things. That is where we learn. We learn to step back and see what potential these kids have and we let it shine. We learn that sometimes its ok to accomplish things with help and hard work and that finding a way that works sometimes takes time.

Even though that all three have their individual roads to follow, I will gladly help them on that road. I will be there when they stumble and need a lift. I will be there when they get to the end and begin anew. I will celebrate with them every step of way. I will always be in their corner cheering them on from the smallest of victories to the biggest.

Friday, April 19, 2013

150 Autism Street, USA.. Postmark?

For most of us, 150 Autism Street is where we live. It used to be 188, but we moved. It is in every city, town, township across this country. This address is with us no matter where we move. We have embraced it. In a sense, it means Autism lives that this address.

We live with it everyday. We know what it means to either have it or have someone we love have it. We know the good, the bad and the very ugly side of Autism.

The Very Ugly. We have all had those days where Autism will rear it's ugly head. Normally when we don't want it too. Its the day were everything has gone wrong, you are tired, and you just want to accomplish the one task you need to do. Then starts the epic meltdowns. For me 95% of the time I have no idea what starts them. The combination of over stimulation, tiredness and the change in schedule or it could something that is only known to the child. It begins the screaming, the biting,hitting and sometimes kicking. If this happens to you in a public place, then its ten times worse. Not only are you dealing with your autistic children melting down, but the judging and ignorance of the strangers. For me Meltdowns are the very ugly side of Autism. As you try so hard to be that good parent and all you want is for your child to just stop. You wish there was some magical spell you could say that would help. You also wish that people would just mind there own business. The last thing a parent who's child is going through a Autism meltdown needs is parenting advice. Again We live it, every single day. We know. This is not our first trip to the Rodeo, nor will it be our last.

The Bad. For me its the struggle. The struggle to make sure they thrive and grow. Getting them to daily or monthly appointments to three or more different services. The IEP battles with the school. All just to make sure these kids are moving forward. The is bad is the stress. The stress and worry if theses kids will grow up to be adults that can handle themselves. We know they will be adults, but if they will be able to take care of themselves when we are gone. That worry if we are making the right choices. I know every parent has that worry. But I feel with Autism Parents, it gets magnified. Which is why we need to fight harder for things.

The Good. I saved it for last. The good is always the small little victories that are made. The word that is said, the academic achievement or the expression of emotion that wasn't there before. The good is the love. Its always going to be there. Kids share it in their own little way. The hugs, the closeness or the smiles and laughter. Its the good that keeps us parents going. Its all those small little victories, we celebrate. We know that they all add up to something bigger.

So yes, I live at 150 Autism Street, USA. This is going to be my address for awhile. The number might change, but the street will always be the same.

Sunday, April 14, 2013

I live in a Special Needs World..

I am going to start this  by saying that I love my children. I love them with all my heart. Everything about them I love. These are the children that are the product of my husband and I. Both of us would go to the ends of the earth if need be for these children. Just to make sure they thrived and were able to achieve their dreams.

For us Parents that have the difficult task of parenting special needs children, it is hard for us sometimes.Its hard for us to not look at other children and think " I wish my child could do that". Its the things that most parents wouldn't give a second thought about. Things like, feeding oneself, dressing oneself, riding a bike or even potty training. Simple things that come easy to children without special needs. They always say not to compare. As children go at their own pace. But we all do it. Secretly. Its there in the back of our minds. We all wish that our children would just do those things or more. Sometimes to us Special Needs Parents, especially when we have had a full day of meltdowns, over stimulation or a day where we have just spent a whole morning arguing with the school over an IEP, the last thing we need to see a child who is capable of doing everything your child should be doing, shoved in our faces. I know that sounds harsh. I will be the first one to admit that I have those feelings sometimes. Its not because you dislike the child, but you yearn for the day your own child would do things. You wouldn't have to worry so much. You wouldn't have to fight so hard to make sure your child is getting everything they need just to help them along.

I don't want to come across as hating the neurotypical child. I don't. I do think that sometimes it is hard for us parents that have some many other challenges, besides the regular ones,for us to feel sorry sometimes if you can't get your child to clean their room or that they got a B+ instead of an A. I know we all have our challenges. I just think that sometimes, we the Special Needs Parents, would like to have a "Gimme" Just something that we don't have to worry about or have to fight for.

I think we just want those small victories we have to be recognized. Like if you have a once non verbal child, all of a sudden they said a word. Or a child that has been struggling with a certain subject and they come home with a good grade.For us Special Needs parents its all about the small stuff. As we know it will turn into something bigger. Its like watching dominoes. Once the child has mastered one thing, it opens the door for something else. All those small steps are monumental to a Special Needs Parent. We celebrate those because we know our child is moving forward. Something is happening. The fight for services and getting those services were for not. I think that is why so many of us think parents of non special needs children, don't understand why we are the way we are. Or why we get frustrated. Or why it bugs us when it is always in our face of what our child should be doing at this age.

Every Child is special. They all have their uniqueness about them. Some see the world differently from others. Some learn differently. In the grand scheme of things, most of us parents just want what is best for our children. We all travel different paths. I think my main thought for this, is acceptance. My struggles are different from your struggles. And that its sometimes hard for me to see the neuro typical world when I live in a world that is filled with special children who have very special needs.

Wednesday, April 10, 2013

The Journey of Finding Myself- A Glimpse into My Adoption Story

I was fairly sure growing up I knew who I was. It never dawned on me that life could be any different. I remember a conversation I had with my mother when she had told me that I was adopted. She had explained  why some people adopt and why children are put up for adoption. At the time, I didn't fully understand.

It wasn't until I was a teenager when a conversation with mother put things in perspective for me. We talked about the choices a person has when put in this situation. How it wasn't a choice that was easy. Also  if I ever did go looking for my birth parents that I need to respect that other person's current life. Maybe they were married and had other children and it was something they didn't want to relive. Or that their spouse didn't know about this child who was put up for adoption. She had said that it wasn't my fault if that was the way things go.She wanted me to understand that people had lives they lived after that choice was made and that I needed to respect that.

 It wasn't until I was in my late 20's when I was having medical issues. A Doctor at the time urged me to seek out my medical history. At the time I didn't think I was emotionally ready to start the process. I knew I want to do so.. I had so many questions. My worry was telling my parents that this was what I wanted to do. I had worried for nothing. When I told them, they were 100% behind my choice. They knew this was important to me. I am blessed that I had two very open minded Parents. They knew I loved them and that wouldn't change. So I started the process....

When I started I was told it could be awhile. It was going to be a waiting game. I get a call two weeks after I  had signed the Registrar. The social worker had found my birth mother. I was floored. Sitting at my job at the time when I got the news, I couldn't speak. I think my co worker thought I had a stroke or something. The first person I called was my Mom. She expressed that she was very happy for me. She knew this was a life changing event.

From that day, it started my journey in discovering myself. My history. All those questions I had growing up were going to be answered. I was finally going to talk to the woman who gave me life. Through letters, pictures and phone calls we got to know each other. I found out that I had this big other family, with Aunts, Uncles, cousins and siblings. Through the years, I have gotten to know my family. Even though I haven't met all of them, these are the people that I am blood related to. These are the people that I get some of my looks and some of my quirks from.

This past winter I was able to visit my hometown. And during this visit, I had one of the best experiences of my life. I got to actually meet my Birth Mother. This was almost a decade of waiting for this since we had started talking. I will never forget the look on her face when she knew who I was. I would like to think she was relieved to know that I had thrived. That I was ok. Standing in the rain as she hugged me, never wanting to let go, felt surreal. All those worries she had for the past 35 years on whether or not I was ok, I think fell off of her heart, just like the rain falling around us.It warmed my heart to know that I was able to give her a peace of mind. She found me. We spent the whole afternoon just talking. There was still one question I had for her, that I was hesitant to ask. Who was my father? As I had nothing on him. She had brought some pictures of him. It was almost like adding that last piece of my puzzle. I can see my eyes in this man. The thickness of my hair and my nose. I didn't have a connection, except for looks with this man. Maybe in time, I might contact him, when I build up the courage.

Also on this trip I met my half siblings. It was kind different to be the Big Sister, having been a little sister. It was surreal to me. I had a Sister and a Brother. I am blessed to have them in my life. I have an older brother, whom I love dearly.The last thing I ever wanted was for people to feel like I was replacing them. My older brother will always be my brother. He is the person I grew up with. The person I looked up to as a younger sibling. I am the only sister he knows. I look at it this way, you can never have enough people in your life who love you.

I feel like this journey has made me more open minded about things. I was never upset at the choice my birth mother had to make at a young age. If anything it makes me appreciate the choices my generation has. I can't even fathom how difficult it must have been to put a child up for adoption and then go through life wondering if you had made the right choice. I think people who are looking for their birth parents need to remember that. It isn't an easy choice. In this journey, I have to give my love to the parents that adopt and raise us children. Especially my own. I couldn't have asked for more supportive and loving parents. They have been with me from the very start. Always letting me know its ok. Understanding why I needed to go on this journey.

I wrote this as I thought that if I shared my story about my journey as a child who was adopted by two loving parents, that it would give someone else hope. It would give birth parents who are desperately searching for that child they gave up some hope. It would give those who are trying to discover who they are some hope.  I hope that this inspires. Now that I have children of my own, I want them to know just how special families can be. In time they will understand why some choices have to be made. And what makes their family unique. That you can never have too many people who love you.

Saturday, April 6, 2013

Saying Goodbye isn't Fun..

Goodbyes are never easy. I don't care people say, saying goodbye is one the hardest things someone can do. Whether it be to something they love, a pet or a person. The emotion that is behind saying Goodbye is gut wrenching.That deep sadness that overwhelms the senses to a point where you can't think of anything else.

Saying Goodbye is something that we military families do quite often. Sadly it doesn't get easier. As each deployment, it is different. There is never a deployment that is the same. Kids get older, understand more, sometimes you are in a different duty station from the last or you have a different support network. There are similarities. That week before your spouse leaves is always the same. Trying to find time to spend time together, trying to get all those last minute things done before they go, make sure they spend time with the kids and the packing. My husband has been deployed for more that half our marriage, but there is something about watching a Seabag get packed up that makes my heart drop. I think its because it makes the deployment more real. That is why it tugs at the heart strings. The emotion and build up to saying Goodbye is always the same.

I often wonder this affects the children. As they see the world differently, they are also trying to understand emotions.Sometimes they don't always understand why they are feeling the way they do. Goodbyes can be a confusing time for children. They want to be angry at the situation, they want to be sad or both. Both of those emotions are perfectly normal to have. Especially when the child understands more of why they have to say Goodbye. Now in my case, I have children on the Spectrum. We all know that kids on the spectrum feel things on a completely different sphere. Saying Goodbye means something different. Either it is a change in a routine or their norm or its a not really understanding why. We can go from a complete meltdown or show no emotion about it what so ever. That doesn't mean they don't notice a change. I see this with my own children. My eldest is mad and sad about saying goodbye to his father when he deploys, where my two on the spectrum, notice, ask a bizillion questions, draw pictures of Daddy in and on everything.That is how they cope with saying goodbye. The coping mechanisms of children is interesting to watch sometimes. One thing they have all proven is how strong they are. Saying Goodbye to a parent or a loved one every other year is not easy. They have their good days and bad days. Where things will be said, things will remind them of the person they said goodbye to. But their ability to just be children, despite the hardship shows Strength and Courage.

Everyone hates saying goodbye unless its to something horrible, then its ok. You can say goodbye to the horrible things in life.If you are saying goodbye to something that will change your life, that is ok too. Some Goodbyes need to be said for the better.

 Despite being married to the military for almost 11 years, I still have a hard time with goodbyes as it never gets any easier. There is always that sadness, sometimes that little bit of anger. But I have found that goodbyes don't last ever. Eventually you get to say "Hello" again. And that is warm, fuzzy feeling especially when you are saying it to someone you love.

Tuesday, April 2, 2013

Acceptance is Awareness....

So today is World Autism Awareness Day. The light it up Blue Campaign has begun for 2013. Puzzle Pieces everywhere! It would be great if the World actually knew what that all meant. It would be great if the World actually took the time to educate itself on what Autism is and how it effects its citizens. This day needs to be about Acceptance.

Acceptance is the one of the major factors when it comes Awareness. People need to accept that this is something big effecting this planet.Conversations need to be had. It makes me wonder for those who don't have autism in their lives if they have actually talked with people who are effected by it. For us family members that live with Autism every single day or the Adults that are Autistic.

One of the most interesting things to me is the just the Ignorance.How many times to do I have to be told that my kids don't look Autistic. Or they don't act like a "Typical" Autistic. Or the stares at in Target when your child is having a meltdown. Or the quizzical looks on people's faces when your child is stimming. What people don't know is that there is a Spectrum for a reason. There are so many things that contribute to Autism. What is amazing is the lack of wanting to learn. There are so many great resources out there to educate, at everyone's finger tips. If people wanted to educate themselves about this, they would. I find there is no excuse for the ignorance.

What I think is the sad part is that people just don't care enough, until it happens to them. Family members that are in denial about a grandchild, niece/nephews or god children. It makes it harder for those who live with Autism when they are constantly trying to defend parenting styles or why things need to be done a certain way.

On this day amid the puzzle pieces and the sea of Blue, make it a day of Acceptance and Awareness. Educate. Share the sites that you feel are important to educate those who want to learn. Have those conversations with people about how Autism affects your life. Sometimes the light bulb does get turned on.