I've been holding onto this blog post for a while now...just unsure what to say. How to say it. If it needed to be said. Who it would affect. How would people react. How would we feel.
But this morning I woke up early and was thinking of what I should write...evidently I was going over it in my subconscious and what I was telling myself as I came out of my slumber was that I've been honest about every other step of our lives up until now. I've shared the funny, the messy, the silly, the sad, the scary, the truth. Almost everything. Our infertility. Our fears. Our adoption. Blake's Down Syndrome. Our birth of Autum. And I've given you hints of this truth, but not the entire thing.
But today, I feel I need to say it. Because only then will other people feel like sharing, talking, praying, and understanding.
You've heard so many funny stories about Leah. My literal, fiery red-head. Ornery, and crazy, and joyful all at the same time. Almost every adult I know, loves to be around her. She is very mature in conversation and very endearing--most days. She has a huge heart and loves to be around people.
But most people don't know what goes on behind the scenes, and to be honest I won't share it all, for her sake. And some I've already shared. She is very sensory sensitive. In that, she can hear things most people don't--and it irritates her. She can feel things most of us don't--and it drives her crazy. She remembers every detail--most people don't. She is very observant so much so she can remember what a man's shoes look like 3 months later when we see him again...after only seeing him once, in passing before. She can memorize anything, in a hurry. She cannot stand not having a routine--it elicits a fear inside of her, that sparks a panic, that leads to anxiety, that cannot be controlled once it hits a certain point. She has to know everything, at all times, going on around her...to find out, she asks question after question--because she is fearful of the unknown, out of control, something she can't handle situation. And just to be sure she will ask again, and again, and again. She is very passionate and that passion leads to anger. Anger that keeps her up for hours at night, as we try to find ways to calm the uncontrollable behaviors down. For years, night time has plagued our household because bedtime meant a 2-3 hour routine of trying to relax, calm, and soothe...remove the over-stimulation that only a glimpse of non-routine could invoke.
What most people (especially adults) peg as 'cute', we now recognize as an inability to understand social cues. She may not know a stranger and to most that seems like a great 'problem' to have--but what we now know is she really HAS NO idea what a stranger is--and could care less for that matter. She will stand in front of your face a foot away, and ask you personal questions you may not want to answer...she may have never seen you before. She may ask you why you are fat...why your hair is sticking up...why your kid looks the way he/she does...
She may not leave you alone. Even if you ask. Even if you don't. She might jump from the highest point on the playground at the park and not bat an eye...I might not even...as you and all the other mom's jump from your seats. Seriously, no fear.
She will go days without showering, brushing her teeth, cleaning her room, changing her clothes...because she just doesn't want too...and doesn't really care what others think. And this is a battle.
And there's so much more. But not until Autum came along in our lives, did I realize that these things aren't all 'normal' kid behaviors...that most parents aren't making the accommodations we are/were to keep our child from the ledge of 'no return' in meltdown world...that most parents weren't reading every book by Dr. James Dobson and every other Christian author that writes about parenting and shaking his and her head saying "nope, doesn't work. been there, tried that." And that most parents weren't pleading for help from doctors, nurses, teachers, and others for help--only to get told there isn't anything wrong..we need to change our discipline...That most parents weren't changing their child's diet in hopes he/she might settle down and act quote "normal" in public situations and in private because a food allergy was causing the issues. That when a parent complained about their child talking back...we were secretly wishing that was all we were dealing with.
So we sought out help, and have been for the past 4 years...but have only recently, FINALLY, found someone who believes us. Who truly thinks that what we say is going on at home, is truly going on. And that it isn't our lack of parenting skills, it isn't our choice to adopt Blake, it isn't our inability to spend time with Leah, our lack of discipline of prayer...and on and on I could go with the reasons we've been given for what we see with our oldest child...but that there is something going on..inside of Leah that we can help her with...
THANK YOU GOD!!
Validation...in all its glory...has finally given this mama's heart a break. (sorta)
And tools to help...the words I have been thirsting for...
We have been seeing a child psychologist (*sigh...big release of pressure here)...there I said it. In this small town of secrets, I have let one out of the bag...we NEED help.
We do. We admit it. And we are seeking it out.
And it has been helping. Probably me, more so than Leah.
We are working together on a plan. On a program. One step at a time. To help my girl out.
And progress is being made...in both our hearts and brains.
I'm learning to view the world through the eyes of a child with high-functioning Aspberger's...
Pfffffttttt....another big release of pressure. You have no idea how many times I have typed these words only to feel like puking. Because for some reason I am okay with accepting one child into our house with special needs, I am perfectly willing to sacrifice my 'needs' to help a child with no home, into ours. I am OKAY with that...but the minute you tell me the child I gave birth too, the one who I love insanely but drives me insane...could have special needs too?? TWO CHILDREN IN MY HOME WITH SPECIAL NEEDS... That very thought makes the acid in my stomach rise up into my esophagus...and sharing it with you all makes it reach my throat.
But then I realize, the label, the title, the diagnosis...doesn't change anything. I've been living with this child for nearly 7 years and have lived in a house with 3 children, 2 with special needs unknowingly, for a year and a half...and I HAVE SURVIVED.
So why now, does it seem like I can't handle it? Not sure yet.
But we will keep learning, keep helping.
And I will keep sharing...because the release of pressure I just felt lift off my shoulders is worth every written word here now.
But this morning I woke up early and was thinking of what I should write...evidently I was going over it in my subconscious and what I was telling myself as I came out of my slumber was that I've been honest about every other step of our lives up until now. I've shared the funny, the messy, the silly, the sad, the scary, the truth. Almost everything. Our infertility. Our fears. Our adoption. Blake's Down Syndrome. Our birth of Autum. And I've given you hints of this truth, but not the entire thing.
But today, I feel I need to say it. Because only then will other people feel like sharing, talking, praying, and understanding.
You've heard so many funny stories about Leah. My literal, fiery red-head. Ornery, and crazy, and joyful all at the same time. Almost every adult I know, loves to be around her. She is very mature in conversation and very endearing--most days. She has a huge heart and loves to be around people.
But most people don't know what goes on behind the scenes, and to be honest I won't share it all, for her sake. And some I've already shared. She is very sensory sensitive. In that, she can hear things most people don't--and it irritates her. She can feel things most of us don't--and it drives her crazy. She remembers every detail--most people don't. She is very observant so much so she can remember what a man's shoes look like 3 months later when we see him again...after only seeing him once, in passing before. She can memorize anything, in a hurry. She cannot stand not having a routine--it elicits a fear inside of her, that sparks a panic, that leads to anxiety, that cannot be controlled once it hits a certain point. She has to know everything, at all times, going on around her...to find out, she asks question after question--because she is fearful of the unknown, out of control, something she can't handle situation. And just to be sure she will ask again, and again, and again. She is very passionate and that passion leads to anger. Anger that keeps her up for hours at night, as we try to find ways to calm the uncontrollable behaviors down. For years, night time has plagued our household because bedtime meant a 2-3 hour routine of trying to relax, calm, and soothe...remove the over-stimulation that only a glimpse of non-routine could invoke.
What most people (especially adults) peg as 'cute', we now recognize as an inability to understand social cues. She may not know a stranger and to most that seems like a great 'problem' to have--but what we now know is she really HAS NO idea what a stranger is--and could care less for that matter. She will stand in front of your face a foot away, and ask you personal questions you may not want to answer...she may have never seen you before. She may ask you why you are fat...why your hair is sticking up...why your kid looks the way he/she does...
She may not leave you alone. Even if you ask. Even if you don't. She might jump from the highest point on the playground at the park and not bat an eye...I might not even...as you and all the other mom's jump from your seats. Seriously, no fear.
She will go days without showering, brushing her teeth, cleaning her room, changing her clothes...because she just doesn't want too...and doesn't really care what others think. And this is a battle.
And there's so much more. But not until Autum came along in our lives, did I realize that these things aren't all 'normal' kid behaviors...that most parents aren't making the accommodations we are/were to keep our child from the ledge of 'no return' in meltdown world...that most parents weren't reading every book by Dr. James Dobson and every other Christian author that writes about parenting and shaking his and her head saying "nope, doesn't work. been there, tried that." And that most parents weren't pleading for help from doctors, nurses, teachers, and others for help--only to get told there isn't anything wrong..we need to change our discipline...That most parents weren't changing their child's diet in hopes he/she might settle down and act quote "normal" in public situations and in private because a food allergy was causing the issues. That when a parent complained about their child talking back...we were secretly wishing that was all we were dealing with.
So we sought out help, and have been for the past 4 years...but have only recently, FINALLY, found someone who believes us. Who truly thinks that what we say is going on at home, is truly going on. And that it isn't our lack of parenting skills, it isn't our choice to adopt Blake, it isn't our inability to spend time with Leah, our lack of discipline of prayer...and on and on I could go with the reasons we've been given for what we see with our oldest child...but that there is something going on..inside of Leah that we can help her with...
THANK YOU GOD!!
Validation...in all its glory...has finally given this mama's heart a break. (sorta)
And tools to help...the words I have been thirsting for...
We have been seeing a child psychologist (*sigh...big release of pressure here)...there I said it. In this small town of secrets, I have let one out of the bag...we NEED help.
We do. We admit it. And we are seeking it out.
And it has been helping. Probably me, more so than Leah.
We are working together on a plan. On a program. One step at a time. To help my girl out.
And progress is being made...in both our hearts and brains.
I'm learning to view the world through the eyes of a child with high-functioning Aspberger's...
Pfffffttttt....another big release of pressure. You have no idea how many times I have typed these words only to feel like puking. Because for some reason I am okay with accepting one child into our house with special needs, I am perfectly willing to sacrifice my 'needs' to help a child with no home, into ours. I am OKAY with that...but the minute you tell me the child I gave birth too, the one who I love insanely but drives me insane...could have special needs too?? TWO CHILDREN IN MY HOME WITH SPECIAL NEEDS... That very thought makes the acid in my stomach rise up into my esophagus...and sharing it with you all makes it reach my throat.
But then I realize, the label, the title, the diagnosis...doesn't change anything. I've been living with this child for nearly 7 years and have lived in a house with 3 children, 2 with special needs unknowingly, for a year and a half...and I HAVE SURVIVED.
So why now, does it seem like I can't handle it? Not sure yet.
But we will keep learning, keep helping.
And I will keep sharing...because the release of pressure I just felt lift off my shoulders is worth every written word here now.
Anna,
ReplyDeleteThank you for your very REAL and truthful post. What a great witness you are to so many! Praying for your heart, for your energy, for your strength, for your emotions, for your patience, for so many other things along the way - things that our great God CAN and WILL provide, because he knit and formed this beautiful, spunky, vivacious daughter inside of you and has fleshed her out to his beautiful creation.
Love you, sweet friend and mama. And in continual prayer for your battlefield!
Amy
I've been following your blog for awhile, and just wanted to let you know my oldest has aspergers, too. It is a hard road... Sometimes those invisible diagnosis can be hard. But it does get easier. Now that you know what road you are on, it is half the battle. I have some recommendations for books, if you want them. Books I've read, and also ones that my 11 year old (with aspergers) has read.
ReplyDeleteYes Sarah! I would love that..you can email me at a_jwoods at yahoo dot com
DeleteBefore I read the diagnosis....I thought to myself...Asperger's. Anna...call me sometime! xxoo B
ReplyDeleteI love that little Leah!
Anna, I have said it before and will say it again. You are one of the most inspiring, amazing people I have ever been able to call a friend. I have gained so much of my own strength from you, your sweet family and blog. I can not imagine the emotional roller-coaster you all have been feeling during this journey. Life in my eyes is not always fair. I am so sorry you have been dealt so many tough challenges. I really think you should write a book. All mothers and families need to be inspired by the beautiful Wood's family journey-"A Walk With the Wood's" :)
ReplyDeleteI wish with all my heart I could be next door to you. My life has not been the same since you left. If I had the choice to move back to Houston or move close to you, it would take no thought at all. Your friendship brought so much sunshine to my life during a very difficult adjusment. Unfortunately, distance in miles has come between us, but your friendship will always hold a special place in my heart. I love you my friend and hope to see you all soon. Stay strong amazing Anna. Not a day goes by that I do not think of all of you. Sending my prayers and love.
Brandi Hembree
Awesome post! I'm sure it was so hard to write some of that. So proud of you! I'll continue to pray for you and your beautiful family!!
ReplyDeleteThanks for the story and the truth! I have a son that fits a whole lot of the things you discribed. I always thought it was just him but now am wondering if something else may be going on. The whole having to know every detail of the plan and then getting angry if every detail is not exactly as explained. We finally have gotten used to just not telling him about things until right before they are to take place because he will drive you nuts with questions that really are relevant but that you may not have the answer to. He too is very in tune with little details that most people never pay attention to. Also he is very in touch with the weather and changes to it. Intellectually he is like Leah, has been able to have adult conversations since he was three. He happens to be large in height so many people think he is older thatn he is due to being tall and speaking as if he was much older. That is all fine and dandy until he acts his actual age. Again thank you for bringing these behaviors to my attention.
ReplyDeleteAnna, Hang in their girl! You are a great mom. Those kids are lucky to have you. Keep on enlisting the support you need. --kimberly Swaney
ReplyDeleteAnna, You may or may not know that Caleb has Autism/Aspbergers Syndrom (High Functioning). When he was diagnosed, we were one of the first families in this area, that experienced the blessing of having him in our lives. It can be extremely frustrating, and difficult to understand - but in time I have realized how very special he is! At age 15yrs he still has therapy each week and has progressed so far! I encourage you to continue with the Psychologist. His social cues and getting along with peers still is difficult for him, but everyone loves him...like you indicated with Leah, especially the adults, and the younger kids. The church has been the best source of comfort, companionship, and love that he has in his life, so I also encourage AWANAs, and as she ages the teen activities are literally a "GOD-SEND" ! I have many books on the subject and you are welcome to borrow them any time you'd like. I even have one for the child with Autism and several people have borrowed it and their kids (even very young ones) finally feel like someone understands them. I get weekly newsletters from the UK that you may want to subscribe to, as well. Anyway, I'm here, there isn't anything that your experiencing that we haven't dealt with and eventually, it just becomes a part of your daily routine.
ReplyDeleteYou can contact me whenever you'd like and there are MANY Aspbergers children in this vicinity, so you are not alone!
Ruth Coyle (620)483-3005 ruthcoyle@embarqmail./com and I'm also on Facebook.
Ruth Coyle...oh yeah, I should mention, TAI-Kwon-Do was one of our favorite socialization tools. Grandpa, Grandma, and Caleb miss having it in Hillsboro a lot!!!