Labels vs Non-Labeling

Labels are convenient. They describe things and help them fit neatly into a descriptive box. But there can be a few problems with Labels and Special Needs Kids. Our kids often don’t fit neatly into that descriptive box. Even if you find a good descriptive box, there is a lot of prejudice and misconceptions about those boxes.
A lot of parents worry about getting their child diagnosed as they are worried about the “Label”. They are afraid that it will mean that their child will be labeled and treated differently, or that because of the label they will never be allowed to be everything they are capable of being.

I once had a little boy in my class at church and there was clearly something different about this child. The parents had had him evaluated but refused to share with anyone what his diagnosis was. This was a problem. If we knew what was wrong we could have been much better equipped to help this little boy. But instead we could only guess and our guessing frequently didn’t yield success.

Whenever I find a parent asking, “Should I get my child tested? Should I share the results?” My answer is almost always a resounding YES!

A diagnosis gives you information. Your child may need treatment to reach their best potential. A diagnosis will help give you access to the needed treatments or a different kind of help. Without the diagnosis getting the treatments or needed help can be much more difficult.

My daughter, R, has a diagnosis of Dyslexia. Without having a diagnosis, understanding how to help her learn to read would have been much more difficult. It didn’t just affect her reading either because the first couple years the school relied heavily on word problems to teach math. My daughter was convinced she wasn’t any good at math when the exact opposite is true. Because I knew that there was an actual difference in the way her brain processes reading words, I could have more patience with her struggles. I also knew I needed to learn how to advocate for her in school so that she can reach her potential and so that the teachers could understand how to better teach her. I want my daughter to reach the great heights she is capable of. I just needed figure out why things were so hard for her, to help her do that. Getting the diagnosis helped me do that. Does she have a “Label”? Perhaps, but she isn’t the “Label”.

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Missing Social Cues

Recently D has had some issues at school and there have been physical altercations mainly on his part though there *may* have been provocation. It’s hard to know.

They say that if you have met one person with Autism, you have met one person with Autism. The theory being that Autism is so different in each person that no two people have exactly the same symptoms. One of the few common traits of Autism across the board is Social Communication difficulties.

D cannot read most facial expressions. He can read happiness, but if we are irritated or upset he doesn’t see it until it is extreme. Growing annoyance or boredom on a peer’s face doesn’t register with him. Realizing that someone else might not enjoy the same things he does or that someone else isn’t thinking the same thing he is, is hard for him to comprehend. He also has a slower processing speed so when friends tell him not to do something, it often doesn’t register until it has become a big problem. His brain just works differently than many of the people around him.

This can cause a lot of misunderstandings with peers. So while we don’t condone biting or hitting, it can often be a manifestation of his disabilities as he struggles to communicate his emotions, thoughts and understand what is going on around him. Years of Speech Therapy and Occupational Therapy have helped but there will always be a deficit there.

Charlie, (his service dog) helps him work through some of his feelings and helps him not take it out on others at school. It makes the other kids more interested in D and more willing to be kind about his idiosyncrasies.

But despite all of his differences, it doesn’t excuse physically acting out against others. He has to deal with the consequences just like anyone else. He does have the intellectual ability to learn. It’s just going to take a lot longer to learn and educating the world around him so that they understand we’re working on it.

  It’s About Love

Lately, my thoughts have been dwelling on what the most Christlike response would be to situations and people where they have chosen something that according to our understanding of the gospel is not something God would have us choose. I say “our understanding” because each of us is at a different point in our journey with Christ. This has been something I have been trying to figure out for years, and I don’t necessarily think there is one right answer to every situation out there, but I’ve come to figure out a few answers for me.

For centuries Christians have shunned people who have chosen to go against God’s commandments. It’s a pretty standard practice across all Christian religions and frequently other religions as well. I really don’t believe it is usually done out of malice but rather, to help the person figure out that their choice was wrong, fear of the “badness” rubbing off on them, protecting others, or that if we treat them well it will be an acceptance of their sin. However, after years of reflection and study of the gospel, I believe that this is an incorrect and unChristlike way of dealing with these situations. So what would be the appropriate way to deal with these situations? This has been my inward struggle to understand the last several years.

We are told in the scriptures not to judge others because we don’t have all the information and that that should be left to God. Yet often we still feel called to stand in judgment of the person we believe to be in the wrong. The example comes to mind of an unmarried expectant mother. Historically they have been hidden away, socially shunned, and sometimes far worse. My first thought is that the child she is carrying did absolutely nothing wrong and should be loved and treated as any other child would be. They are not less than because of the circumstances of their birth.

Second, after years of thinking about this and honestly agonizing over it, what I have come to believe is that we should love the person who made a different decision than you would have. People don’t care if you think they did wrong unless they KNOW you love them. Shunning them, making them marginal members of society is not going to bring them back into the fold of God. Loving them has the best potential of that. When you know that someone truly and deeply cares for you, that is when your heart changes. That is when you find the courage to make changes in your life because you know you are not alone. And even if they don’t decide to change and repent I still believe that this is what Christ would have us do.

Judging, I think should be held in reserve and only used in judging situations rather than people. Is a situation unsafe? Will this situation bring me closer to Christ?

I think one of the reasons so-called “bad kids” become so bad is because they don’t have people in their lives that care about them. They make a mistake and suddenly lose the friends who are a good influence because the friends don’t feel comfortable around them anymore or the parents don’t want them around them anymore for fear the “badness” will rub off on their good kids.

I hope I can break this tradition of shunning people in my life and instead pass on to my children the tradition to judge a situation that is unsafe for them like a party where alcohol is being consumed and they shun that. But that when the next day rolls around, they show love and compassion to those people who were at the party but made a different choice than they did and try to bring them into their circle.

I haven’t figured out all the answers to my questions yet. Hopefully, as I continue studying, praying and pondering those answers will become clearer.

Anniversary

On this day, 15 years ago I married the man I love. We had no idea what life and the Lord had in store for us (and it’s probably a good thing we didn’t).

This 15-year journey has not been easy. It’s seen 2 deployments to Iraq, 2 dogs, 2 kids, more moves than I want to count, job losses and job gains, health issues, and LOTS of learning, growing and stretching to the point of almost and sometimes breaking. After all that has been said and done, I know I am a better person because of all this craziness we have called our lives together. Often when one of us is to the point of breaking, the other has to carry us along until we can stand again together. I’m so grateful that I have someone who can do that for me and for our family.

It’s been a hard-won 15 years, but worth it. Here’s to the next 15!

Thanksgiving

I publish every Thursday and occasionally some Tuesdays. This Thursday just happens to be Thanksgiving.

To keep things simple, on this day of gratitude, I want to simply list some of the things I am grateful for.

God and Christ- I’ve recently rediscovered my testimony that they are always there for us and will never forsake us no matter how bad the circumstances.

Family- I’m SO grateful that I have one. I cannot imagine my life without them.

Health- This has been a struggle for me in the past and as my back is doing well, my bronchitis/asthma is doing well, it makes my heart happy.

Love- What can you really say about it that hasn’t already been said? It makes the world turn and a much better place to live.

Oceans- They are my happy place. The smells, the sight of them, the sound of the waves crashing; it calms me and helps me be free.

Good Books- My best friends when no one else is available. Special treats when I find a really good one and unexpectedly pull an all-nighter.

Friends- Life would be a very dark place without them. ‘They have helped me through so much and cheered me on.

My Country- Americans like to think of it as the best place in the world and it is pretty darn great. It’s the place I love and the place I will fight for.

What are you thankful for this Thanksgiving day? Cherish it. Love it. It may not be there tomorrow so make the most of your time with the people and the things you love.

I’m Tired

This was originally written a couple weeks ago-

A friend recently asked me if I thought D would be able to live on his own and hold down a job one day. That is our goal. But whether or not we will be able to reach it at this point is unknown. Although he has Autism, and he’s fairly high functioning, and pretty capable, he will not choose to do things on his own.

What do I mean by that? With a 3-5 year old you expect that you are going to go behind them all the time helping them, making sure they do what you ask, but after about 5 you start trusting they will follow through on their own in limited circumstances most of the time. As they grow older this ability to work independently grows with them. Usually.

We don’t have that with D. He is completely and totally capable of doing everything that is age appropriate in caring for himself. What he lacks is the desire to do it and any follow through.  It isn’t a lack of parenting or structure. It simply isn’t there.

I spend my days putting a carrot in front of him and burning down the bridges behind him so that he will get anything done. Simple things like getting him out of bed, getting dressed, taking a shower shouldn’t require a Herculean effort to accomplish. And it is this way with most things he needs to get done during the day. He is almost as big as I am now, so burning down the bridges behind him is becoming increasingly more difficult. I cannot physically make him do anything anymore. The carrots I hold out are increasingly ineffective as he just doesn’t care about anything enough to take a shower or participate in Science class unless it’s some huge thing and that can’t happen every day.

I’m dejected and exhausted this morning as it is 9:30am and school started an hour ago. He’s still at home. Yesterday he stayed home from church because I couldn’t get him to shower and change and I was tired of him always making me late for church. My husband had been out of town all last week for work and I had been sick. I was and am done in.

Will he live on his own and be a contributing member of society? I don’t know. Right now while I’m in the trenches it doesn’t look like it. But we will keep working towards it and praying that he does because as his Mom, I cannot and I will not give up.

My Own Special Needs

This was originally written last week-

Time to declutter and clean up my life. As a Special Needs Parent, I have a finite amount of time, patience, perseverance, and ability to hang on. The last 2 days I’ve been realizing I’m at the end of my rope and I have nothing left.

When this happens I know I need to make my life smaller at least for a while. This is a sign that I’ve allowed (?) my life to spin out of control and spread myself too thin. A trigger for my own special needs Anxiety and Depression.

So I started out by deciding while I love to crochet, I’m no longer going to try to sell my wares. It’s not worth my time and effort. I’m sure I’ll continue to crochet but it will be for gifts and needs and probably on a much smaller scale and remain just a hobby.

Next, I looked at my nemesis, Facebook. I spend WAY too much time on there. It’s important to me as I can connect with people and family my circumstances may not otherwise make possible. But there is another side of Facebook that drags me in. All of those VERY worthy causes. Right now I don’t have anything left to put into caring about the world. Next week, or next month, maybe I can. But for now, I can’t. So I went through and deleted myself from about half of the groups I belong to, thus making my world smaller and mentally more manageable. At times like this, I often won’t answer the phone. I let it go to voicemail and if it’s important they’ll leave a message. I can then decide when I have the emotional strength to deal with it. I would be concerned if this were what I did long term but it’s usually only for a few weeks until I can breathe again.

Next, I started cleaning and getting rid of things. I inherited my Mother’s appreciation for an uncluttered space. It is rare however that any of my spaces are uncluttered. Our family room has been in the process of being cleaned out for at least the last 3 months and had stalled halfway through. It is now mostly done- other than the laundry I’m still working on folding. Getting rid of those things on my to-do list that has been nagging me is mentally freeing.

Throughout it all, I was praying to be able to be strong enough to carry the burdens that had been placed on me and that a way through some of them would be provided.

I started the day utterly dispirited, dejected, crying and overwhelmed. But as I took these steps, by the end of the day while none of my troubles and cares had changed, I felt immeasurably better. This tells me I’m on the right track. I frequently can’t change the roller coaster that is being a parent of a Special Needs child, but I can take care of myself so that I can better handle it.

The Land of the Free

I didn’t grow up in a military family. My Grandfather served in the Navy at the tail end of WWII and spent most of his time in the hospital due to a mistake when being inoculated against TB, and was instead given TB. So the military wasn’t something I really knew much about growing up.

Despite that, somehow during my formative years my parents and probably the daily recitation of the Pledge of Allegiance and the singing of at least one patriotic song at school instilled in me a great love of my country and our flag. I’ve always felt it’s importance and the need to honor and respect both.

Long before I met my husband I had written a piano solo arrangement of The Star Spangled Banner that I was asked to play in my hometown due to some very devisive things that had been going on there at that time. I poured my very soul into that arrangement and my feelings of this anthem into my rendition of it. The audience joined me and sang it as I played.

A couple times in my life I’ve had the privilege to see the original Star Spangled Banner and spent time at Ft McHenry where it flew during the battle that is immortalized with our National Anthem. Those were reverent times for me as I reflected on our country, our flag and yes, those who have fought to protect it.

I am married to a man who joined the military because he cares very deeply about his country and defending and protecting others. He also happens to be in Law Enforcement. The experiences I have had since becoming a Military Spouse and Law Enforcement Spouse have only caused my love of Country, our Flag, and our Anthem to grow. I have served my country in my own way by supporting my husband and taking care of our family so he could protect our freedoms. Our Flag means something to me. Deeply.

I have been taught to respect, love and honor The Flag and the National Anthem because it represents our country. Our entire country and all the people in it. Our nation I think is a bit like one of us because it is made up of so many of us. We make mistakes, we do incredibly wonderful and brave things. But we are also human and make mistakes and our country reflects that.

Frequently we think of The Flag belonging to our military. And while flags have traditionally been created for the military and armies have carried them into battle, the truth is, it stands for much more and belongs to every American. It represents our Country and every Man, Woman, and Child. As a former short-term employee of The Federal Government, I too took the oath to protect and defend the United States. This is not something only the military and the President swear to do, but anyone who works for our Government. Whether we take the oath ourselves or not I feel it should be the aim of all the people in our country to protect and defend it against all enemies foreign and domestic. We have a moral obligation to stand up for the weak, injustice, and things that are wrong, to make this country better.

If the NFL’s players complaint is truly about police brutality and race inequality, I think there could be a better way of protesting that. The police have nothing to do with The Flag other than to protect and defend it as well as every other American person. Raising a fist to our Flag during the National Anthem is a sign of disrespect to The Flag and no one is going to convince me of anything different. Sitting, in my opinion, shows perhaps not a disrespect as much as a lack of respect which far more than NFL players show in this Nation. Taking a knee could legitimately be argued that it isn’t a sign of disrespect but I reserve my kneeling for God and my Savior.

These NFL football players have a voice. They get paid a lot of money and get a lot of attention. If they truly want to help the problem of police brutality, or race relations, let them go work together to find solutions with the police. One of the most valuable things I’ve learned as an advocate is that if you want to change the way things are, you can’t just complain about things. Bring solutions to the table to find a way to make that change happen. People idolize NFL players and they have a huge following. Race relations? Let them do the same thing. Take their money, their influence and let’s build up families, let’s build up neighborhoods and get kids involved in sports and learning and doing so with all races. Because working and getting to know each other and building up families is the only way to break down race boundaries and prejudice. Just think how effective and how much it could bring the country together if their protest was something more along these lines. (And in all fairness many Sports Players do work with communities and give back to them but I am thinking on a much larger level.)

I think the discussions that are happening are good. I think that people do have the legal right to protest. But I also think there is a moral right that doesn’t deserve to be forgotten, and morals are not just for the religious. Morally I believe we owe it to this Nation and to each other to rally around the Flag.

 

How Charlie (the Service Dog) Came To Be

4 years ago, a dog entered our lives and has changed it for the better. To the outsider, it may not look like he has done much, but we have seen the difference.

img_2516Charlie is our son D’s Golden Retriever Service dog. He was trained by Arctic Paws for Service in Alaska. He spent the first 2 years of his life training for the job he has now. They didn’t know what kind of a disability he would help serve so they trained him in all kinds of things and from the first moment we saw him he stole our hearts.

I started hearing about Autism service dogs and what a great difference they can make for people with Autism. I had been extremely resistant to getting a new dog as our last dog had been a disaster and I did NOT want to repeat it. But the benefits of having a Service Dog sounded like they were pretty awesome.

An example of some of the things we discussed having Charlie of for D was interrupting his door slamming, (At that point in time he LOVED slamming doors repeatedly.)  and helping to keep him calm and by my side during shopping excursions so he wasn’t screaming and running up and down the aisles the whole time.

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D and Charlie on their way into the church.

What was really interesting is not so much what Charlie had to do for D, but D’s immediate response to Charlie. Charlie never had to interrupt his door slamming because D immediately stopped doing it once we brought Charlie into the house.  He had also been sneaking downstairs to eat all the sweets in the house. This stopped the first night we brought Charlie home.

Not quite so immediate but slowly a huge improvement, shopping became bearable.
Our main church meetings were an exercise in supreme patience. They would find me literally dragging him out of the chapel due to his kicking, screaming, biting and hitting. D would be set off within minutes of sitting down. Once we got Charlie and started bringing him to church it was several years before I had an issue with him at church again. Charlie goes under the pew and when D can’t handle things anymore he crawls under the pew and pets Charlie until he’s ready to come out again. It has been truly miraculous.

In the past year or so D has started taking Charlie to school with him. D has plenty of kids talking to him now and he is readily accepted because everyone loves Charlie and wants to know all about him. As social deficits are one of the main issues of Autism, this is an area that is usually pretty difficult for him. Charlie helps bridge that gap.

Charlie doesn’t solve all D’s problems, but he mitigates them.

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D and Charlie at school

Why I blog

Looking for pity?

To air my dirty laundry?
Sympathy?

For reassurance that I’m wonderful?

Hardly.

I have shared some heavy things here and frequently not things that would make someone smile or lift you up. It’s a gamble and one I thoughtfully and purposely decided to make. I want to show others they aren’t alone in this crazy journey we call life. I want to raise awareness and understanding for people and families who experience the issues that my family does on a daily basis. Sometimes it isn’t pretty. Just like sometimes in your own life. Even if we don’t share the same issues, your life isn’t always pretty. I want people to realize that, and find acceptance for that and us.

I blog for my own therapy to deal with the challenges I face. Writing my thoughts, feelings, and emotions down help me process things and put them in a healthier perspective. So it doesn’t matter if one person reads the post or 100. It also helps me solidify my feelings on an issue. I’m not looking for pity. I’m trying to remain respectful of the other people in my family while sharing our challenges.