How to help a special needs family

 

 

Lights will guide you home

and ignite your bones

and I will try to fix you.

Do you ever listen to a song just so you can have a good cry? I push the pain inside. Deep down inside. Sometimes though when the kids are gone and my husband is working I have to let it out. The lyrics to the song get me there every time. You know the song. The song that gets YOU every time you hear it and it always brings you back to the same place. I visited that place today to let off some steam. It’s healthier than holding it in!

I’ve refered to my “game face” before. The face I put on to face the world. The one that makes others feel better. When someone asks “how are you?” They don’t really want to know the truth. They want to hear the obligatory response of “good” or the ever popular “fine”. No one truly wants to hear this response: actually I’m doing pretty bad. My energy is depleted so I use caffiene like a drug to get through the day, my children are dealing with stuff that kids shouldn’t have to deal with and I can’t make them better no matter how hard I try, I take on more than I can handle because I want everyone to be happy. Oh… and I’m scared to death to go in the sun because having basal cell carcinoma puts me at a greater risk of developing melanoma. How are you today?” But of course no one would answer that way. No matter how badly you feel you wouldn’t want to make someone else feel bad so you put on that game face and say “great”. Liar, liar pants on fire!

If you happen to have the gift though to look a friend in the face and see that they are merely hiding the pain- do something about it. The worst words to hear are “let me know if you need anything”. Of course the person wouldn’t ASK for help. Just DO something. Don’t ask first. Don’t make yourself feel better by just offering help. Think about what you would need if you were in their shoes and extend your hand. If you don’t know what to do and you want to help a family that has a child(ren) with special needs here are a few things:

-take their kids! Just for a few hours. Long enough for the parents to share a meal together alone, go grocery shopping, or just take a nap! Caring for kids is exhausting. Caring for kids with special needs and/or mental illness is expecially draining. You are on high alert all of the time. The few hours away gives the parents time to remember that they love one another and their kids (distance makes the heart grow fonder eh?)

-bring a meal over. You know the drill! Someone has a baby and all the family and friends you haven’t seen since last Christmas start arriving with lasagna in hand. They do it because they know that not having to make a meal would elminate a lot of stress. Even if its just for one night. Don’t like to cook? No problem! Give them a gift card to eat out. Order pizza and have it delivered. Most families would be happy with PB&J as long as they didn’t have to prepare it

 

-Take something off their already overflowing plate. In our personal experience we had so many people tell us that they would help us out before we took over the community baseball/softball association. Once we actually commited to it though, the help disappeared. I’ve had to learn how to ask for help just because its physically impossible for my husband and I to work at the concession stand when people don’t show up for their assigned times, be available to the teenage umpires should they need help, answer coaches questions, field parents concerns, deal with the other town’s representatives emails and calls, pick up equipment, and organize everything. Ooops I forgot that we have two sons that are playing themselves so there are weekly games and practices. Everyone can see that we are running around like chickens with their heads cut off but no one offers help. No one wants to. Shoot, who would? It isn’t fun. But it is necessary. It is for a greater good. So to be honest we are happy to do it. Its just a big undertaking and a little help would be very much appreciated.

-sit down and listen. This may be the best thing on the list. No one wants to hear the ugly side of mental illness but the stigma keeps families in hiding and feeling ashamed. Let them tell you about how things are really going and don’t pass judgment. You know how hard it is to parent a neurotypical (is there such a thing) child. Add weekly therapy appointments (both individual and family), community services, doctors appointments, calls to insurance companies that know you by name, and everyone’s least favorite-pharmacy runs. It’s enough to bring the strongest people to their knees. Just listen.

April is Autism Awareness month. Every day is autism awareness day in our home!

My child is autistic. PDD-NOS to be exact.  Pervasive Developmental Disorder- Not Otherwise Specified.  He recieves services such as equine therapy, individual therapy, community based support, an individualized education plan including accomodations and modifications, respite care, and psychiatry appointments along with medication.  Without those services I’m afraid to think about where we would be.  He has learned coping skills for when things around him are stressful, loud, or too bright.  His self esteem is improving a lot after working with misfit horses that were abandoned, retired race horses due to injury, or just didn’t have a place to call home.  He interacts with them in ways that amaze me.  They have an unspoken language. They seem to understand and accept each other for what they are without explanation.  Without the IEP he wouldn’t make it through school.  No medication would mean he wouldn’t be here.  He would have taken his life by now.  Yes I know that sounds cold but it is the truth.  The antidepressant he is on keeps him level where his brain can’t on its own. The mood stabilzers keep him from being so manic all the time thus leading to impulsive decisions that he can’t take back.  The ADHD medication allows him to get through his school day.  These are all services he needs.

April is autism awareness month and with the new figures coming out people are starting to pay attention. Autism now affects 1 in 88 children and 1 in 54 boys.  My son is one.  Like many other topics out there, people have strong opinions about this.  They think autism is caused by vacines, environmental factors, genetics, and/or poor pre-natal care.  I don’t know what causes it.  What I DO know is that if  the definition of autism changes in the Diagnostic and Statistical Manual of Mental Disorders, which is used to determine treatment, insurance coverage and access to services for a variety of mental illnesses, a lot of families will be affected.  Aspergers Syndrome and PDD-NOS will no longer fit under the autism umbrella.  Where will that leave my child and all the others with those diagnoses?  Without services most likely.  This is something I just can’t stomach.  I can’t help but think that if the panel of “experts” making the recomendations had a child with autism, their opinion would be quite different.  Like may other things in life, if you don’t live it yourself, you can’t truly relate.

If you are one of the people sitting around bashing doctors for “over diagnosing” autism or passing judgment on the parents dealing with the ramifications of the illness, please stop. You have NO idea how much all of us parents wish that we could take it all away for our kids.  Like you, we want to know what is causing it and how to “cure” it.  But we are exhausted.  I use the word alot because it’s the only word that fits how I feel (and I’m guessing many other parents of children with special needs).  It’s the kind of exhaustion you experience the first few weeks home after having a baby.  You go through your day wondering how you can keep your eyes open.  You don’t sleep at night because you lay awake thinking about how you could have done something different that day to make things better for your children. Not only the autistic child, but the others that have their lives altered because its just the way it has to be.  You wonder how your marriage is going to survive the daily battlefield that is the life of having a child with mental illness. You think the divorce rate is high in the US?  Take a look at the stats of marriages that have one autistic child involved.  It’s hard.  Sometimes I have to vent too.  Sometimes I wish things were different for ALL of us involved- especially D.

While the experts sit around changing definitions, determining the fate of the families actually being affected by their decisions, I’m going to keep on living that life.  The name of my blog is “They ask me how I do it. I was unaware I had a choice” because it fits. We’ll go to countless appointments, look for ways to help our son, and pray that things get easier.  Until then I’m taking on more than I should and trying to be everything to everyone because that is just who I am.  If you see me out and I’m not smiling or talking, it isn’t because I’m not friendly I’m just trying to keep all the balls in the air-soccer practice and games from one child, all of D’s many appointments, D2′s ongoing ADHD/anxiety woes (add in a bully issue), staying on top of the basal cell carcinoma, helping to run the community ball association, lobbying for smaller class sizes in our school, running a small business, and oh yeah…being a wife. Just shout my name- I’ll snap out of it

Please take half an hour and educate yourself on autism.  It affects so many families and its effects are far reaching.  Whether your child is autistic or not, autism will impact your life.  My favorite resource is http://www.autismspeaks.org/  As always, I am more than happy to answer any questions you may have.  We are all in this together!

Take 2 and call me in the morning (wait cut that by half, add this, and we’ll hope for the best)

My mind and heart have been in turmoil for the past two weeks. I was doing ok with D’s issues but things have become compounded.

For the most part, I’m in the acceptance stage of grief. The five stages are denial, anger, bargaining, depression, and acceptance. When you experience a life changing event such as divorce, death, and illness you work through the stages. I have done that with D’s diagnoses.

Learning that D had ADHD wasn’t life changing. We went through a slew of bad doctors before finding the perfect child psychiatrist for us. We tried different medications and types of therapy to help him. We were ok with the fact that he needed help with his impulsivity and focus. But, when I was faced with the fact that our son was mentally ill and would likely always have to deal with depression, anxiety, mood disorders, and now a pervasive developmental disorder I felt like I was punched in the gut. I thought/felt:
1. Denial-The doctors are wrong (ALL of them). They just don’t know MY son. They are just trying to drug him.
2. Anger- I can’t believe these people don’t understand my son. All kids are like this!!!!! They throw fits and cry and scream and yell. They can’t sit still or pay attention. This is just stupid.
3. Bargaining- I’d give anything for him to not have to go through this. This isn’t fair! Maybe if I tried this or that it’d all go away.
4. Depression- I did this to him. It’s all my fault. I shouldn’t have gotten pregnant so young. I had caffeine while I was carrying him. I caused all of this I was in high school and college and didn’t pay enough attention to him. I didn’t do enough. I’m not a good enough parent for him. He deserves so much more than me. I’m a horrible mom. Such a huge, massive failure.
5. Acceptance- at least we know what we are dealing with now. I can move forward from here. I love him no matter what his doctors think he has. I’ll love him unconditionally regardless of what he is/isn’t.

Acceptance is the healthiest stage. This is where progress can take place. This is where my child needs me to be so I can help him. I actually am there most if the time although I do backtrack to depression and anger occasionally. I blame myself a lot. A LOT! But I learned that there really wasn’t anything I could have done to cause it. This is the way his brain chemistry is. This is an illness.

I came to terms with everything and wasn’t doing too bad. But now D2 is going through it. It brings it all back again. You can deal with the fact that one out of 3 sons has special issues but when it becomes 2 of 3, it changed everything.

1. Denial- the same teacher brought the attention and focus problems to our attention that did with D. She just wants the kids to sit still and shut up. She doesn’t realize kids can’t just be robots.

2. Anger- what is wrong with everyone?!?!? Why can’t they just leave my kids alone. YOUR kids aren’t perfect! Everyone is wrong!

3. Bargaining- this can’t be right! What can I do? Change? Try?

4. Depression- I was wrong. This really IS my fault. I passed my toxic genes to my kids. I didn’t know I had anxiety and depression before I had D2. How could I have not known? How could I be do selfish to have kids and pass it on to them? I was the pencil chewer, nail biter, worry wort. Now my kids are. I’m turning them this way. It’s all my fault. How else can you explain 2 kids ending up the same way?

5. Acceptance- here we go again. We’ve done this before and we can do it again. I know how to get D2 the help he needs. I know how to advocate for him. This isn’t the life I signed up for but God must think I was strong enough to handle this. I will trust in Him.

This has been a real blow to us. D2 was the happiest child you’ve ever seen. The most caring and compassionate kid. He’ll stand there and hold the door open for 100 people in the cold just to be helpful. He doesn’t know a 4 legged creature he doesn’t love. He loves babies and they love him. He is thoughtful and kind hearted. And now he has to deal with this. I’ve watched him change before my own eyes. He lost interest in things he used to love. He’d rather stay inside and watch TV rather than play outside. He hates school and doesn’t seem to put forth effort. He cries all the time. When he’s not sad, he’s angry.

Things really did improve when he started on an antidepressant. He started playing again and smiling. God i missed that smile! But the ADHD medicine has been a lose/lose battle. Nothing seems to work for long. If there are any “possible” side effects, he gets them. We are struggling with how to handle it. You don’t want to give your child a medication that does more harm than good. I don’t even want to give him one that does ANY harm. The latest medication is making his blood pressure low. He’s very tired and flat. So we adjusted it and added in a stimulant but we are scared. This is how things started with D. One ADHD medicine turned into an antidepressant and then a mood stabilizer, etc. D2 is now on 3 Rx meds. 3 too many. The issue causes a major strain in my marriage. My husband doesn’t take medicine for a headache until its unbearable and doesn’t go to the doctor unless he’s on his death bed. He thinks “kids didn’t take this medicine 30 years ago. Why does every kid have a diagnosis now?”. Then when the side effects show up from the medicines, it just makes things so much worse. I feel like I’m fighting this alone. I DO NOT want my kids drugged. I’m not a mom that wants something to be wrong with my children. I really wish this wasn’t our reality, but it is. I won’t let them suffer. If there are treatments to help our kids, I’m going to try them. I don’t know why this is happening or how to prevent it (heck- even how to help it). But I won’t stop until my kids are on a level playing field like their peers. I want them to have the same opportunities as others. I want them to feel success!

Until I have the answers I need I’ll continue educating myself, talking to other parents, and praying. I don’t have the answers. I don’t know what the right answers are for D2 right now but he needs us to be on the same page. One foot in front of the other is all I know how to do.

Please keep my kids in your thoughts. There’s no blood test to take to diagnose these mental health issues. No cut and dry treatments. It’s try this, add that, cut back on that, and so on. I pray that He will show me the right path and continue to give me the strength to push forward and advocate for our sons.

Awkward Aspie

I thought the hardest days were behind us.  We have done the newborn phase where I was up every two hours nursing a hungry baby boy and praying that he eats quickly so I could get 90 minutes of sleep before the next feeding.  We survived toddlerhood and all of the tantrums, tears, and teething.  Next came skinned up knees, pinched fingers, and bruised elbows.  Little did I know that all of those moments were preparing us for the teenage years.

There isn’t a Band-Aid on the market that will heal the bruised hearts teenagers experience. Everyone has tips and tricks for how to handle stuff like fussy babies and potty training. There just aren’t books out there for how to handle all the unique things that pop up in the lives of a child with special needs.

D has been struggling in school lately.  In our efforts to have him mainstreamed into regular ed classes so he feels normal, he’s falling behind academically.  We made the decision this week to pull him out of two classes and have him in the resource room with the special ed teacher. He seems ok with the decision because he knows that he was falling behind fast despite the accommodations in his IEP.   Along with that stress lifting decision, Danny starting a long-term job assignment with the construction company he really wants to work for, and me gaining a new daycare child, this week was looking up. Then Wednesday happened.  Here’s the story…..

In P.E. (always the back drop to every bad high school story) there is an assessment called the survivor test.  It’s basically where you move from station to station for 11 minutes lifting weights, doing squats, etc.  The students pick the level think fits them the best.  D chose level 3 because all the girls chose level 2.  The problem is, D is about as strong as his mom (which isn’t much).  He struggled through the whole thing and failed miserably as his peers watched.  He got a whopping 33%.  He was embarrassed and of course, sore.  I talked to him about it that afternoon, that evening, and the next morning (got to love how Aspies obsess on an issue).  We came up with a plan to train together so when he repeats the test the next quarter, he’ll do better.  But, the pain was still there.

Then Thursday happened (with the Wednesday wound still mostly open)…

In the lunch room (where every other bad high school story takes place) D dropped the cheeseburger off of his lunch tray.  The school counselor saw it happen and told him to cut the lunch line to get another one.  He wasn’t comfortable doing it but because she told him to, he did.  Apparently all of the kids were giving dirty looks because he cut the line.  He was relieved to reach the lunch table and plopped down.  He has his mother’s gracefulness (lack there of actually) and he tipped the tray towards his lap accidentally.  He ended up with a lap full of applesauce.  He asked his best friend for his napkin and he said “I need it” so he asked the other kids that are all his friends for a napkin and no one would give him their napkin.  So he walked to the other end of the lunchroom with applesauce all over himself.  Again, in front of his peers.

I teared up while he was telling me what happened.  He didn’t see me but he knew.  He knew that he could turn to me to with this stuff because I am mom. This is what I do.  But I couldn’t relate.  Even though I didn’t really have the same exact experience in high school, I tried to relate to what he was going through.  I didn’t really fit in to any certain niche in school.  I wasn’t popular, athletic, or pretty.  But I did have one thing.  I had a small group of friends that stood up for me.  We stuck together and I know without a doubt that if I had spilled applesauce they would have handed me their napkins, gone and got me more, and laughed along with me.  But D’s friends are like him. They have IEPs for reasons that are similar to his.  They have social issues and don’t react in the way you’d expect a teenager to react.  So here he is again.  Friends with kids like him that obsess over one thing and spend all of their lunch period talking about Halo or Call of Duty and he can’t relate because we are the mean parents that won’t let him sit and play violent games for hours on end every day.  They don’t read like D does and finish thick books in a few days. They can’t relate to him, he can’t relate to them.  They accept him for who he is so he calls them “friends”.  But his friends don’t stand up for him, protect him from bullies, or even hand him a freaking napkin! But because he doesn’t fit in anywhere else, he chooses to hang with them.

Where is that book?  DVD?  Elmo can teach you how to potty.  Dr. Sears can teach you how to deal with tantrums.  Who will help me help my teen? Amazon doesn’t sell “How to help your painfully awkward teen with mental health issues make friends with kids that will actually help his self-esteem”.  If you find the book, please let me know.  Until then I’ll keep hugging, listening, and hoping to find the right words to help him through this really sucky part of life.

And to think- we haven’t even gotten to dating yet.  Yikes!

Eh um…let me clear my throat

Whew! Tonight was a new experience for me for sure.  I spoke in front of the district board of education.  I’m certainly not used to having a group of adults staring at me.  Kids I can handle- adults, not so much.  However I presented my concern about the districts current cold weather policy for going outdoors for recess:

“In cold weather, recess will be limited to five minutes outside when the wind chill is between

minus five degrees and minus fifteen degrees Fahrenheit. No outside recess will be held if

the wind chill is below minus fifteen degrees Fahrenheit. The office will inform the

homerooms over the intercom when the wind chill factor is low. The health department

recommends this policy”. 

I presented them with a chart that is used by local school districts in Topeka outlining the recommendations of the Iowa Department of Public Health.  This is the same set of guidelines that licensed childcare providers, like me, are required to use. 

Childcare Weather Watch chart

The superintendent thanked me for my concern but told me that they spoke with someone at (KDHE) Kansas Department of Health and Environment and they would like to see the kids get outside every day even if they can only go out for five minutes per recess.  He also told me that he grew up in Iowa and it gets much colder there.  I understand where he is coming from and I told him that.  I AM the person that gets the kids after they’ve been inside at school all day.  But I’d still rather have hyper kids than have kids that are outside when the meteorologists warn the public that the windchill is dangerously cold.  He did tell me that I’m not the first person to raise this concern but no one else had a plan for WHAT to do about it.  I had handout packets for each board member for them to refer to and look at when they make their decision. 

I really do hope they at least consider what I had to say. Kids need exercise.  They need to run and play.  But not when the temperature of windchill is -5 to -15.  Those temperatures just aren’t safe for kids.  All and all, I am very pleased that I followed through and went.  It was a major step outside of my comfort zone and my face is still flushed, 30 minutes later because I was so nervous.  It’s amazing how our kids push us to do things we’d never consider before!

Watch out Bahamas! The Maderes are headed your way (you’ve been warned!)

It started with a little note that read: Roses are red, violets are blue.  We have an early Valentine’s game for you!  The boys were so excited!  We hadn’t ever done a scavenger hunt for them before so they were jumping with delight.  The clues read:

1. To begin this scavenger hunt, you must find something a Chief’s player would punt.

2. (Found on a football) You’re really having a ball of fun now but just wait! In 77 days things will be GREAT!

3. To find the next clue, you must look for something mom wears everyday that is crimson and blue.

4. (In my KU coat pocket) Smart thinking by looking in my coat! The next clue will be found on something that will float.

5. (Inside a toy boat) You’ve found all the clues now but there is no time to snooze.  In April, all 5 of us will be leaving on a CRUISE!

6. Are you wondering where we will go? Look in the green envelope and then you will know!

Then I had a paper with pictures of the ports we will be visiting. 

In typical Dalton fashion, he was most happy about the 24 room service.  The kid weighs a whopping 43 pounds and is in the third grade but he is an eating machine!  Dylan understood the most of course and is still excited about it! Dayton seems happy but doesn’t really know what to expect.  Danny and I are thrilled! We can’t wait to take the kids to experience things they wouldn’t be able to in Kansas.  We have seen too many young people pass away this year already and its made up realize that if we wait and do all that we want with the kids until they are older, it may be too late.  We are going to pay our bills, save money for rainy days, but also enjoy the sunny Caribbean ones.  Life is too short to sit and wish.  We are going to go live life NOW!

G.A.D. isn’t good

Growing up I thought the word anxious described something good. For example I was anxious to go on vacation with my family, move into a new house, and start middle school.  It turns out feeling anxious as a child and as an adult are two very different things.  The little butterflies are a good feeling; even exciting.  But anxiety as an adult feels very different.

The best way I can describe it is that feeling you get when you stay under water too long.  You dive down to the bottom of the swimming pool to retrieve something but it takes you longer than you expected.  You kick off the bottom of the deep end but before you reach the surface you get this feeling that you may not make it up in time.  Once you inhale your first deep breath you feel relief because you know you haven’t drowned but you still struggle for air.  Until your heart rate returns to normal and your breathing is steady you don’t feel quite right though.  That is what anxiety feels like to me.

The problem is that there is no event that triggers the response.  Not a near miss on the road, someone startling me in a dark hallway, or even a good event like seeing the Chiefs coming from behind to win the game (ok that’s more of a fantasy anyway .  No matter the reason- I wish there was one.  But there isn’t with me.  I guess subconsciously there are many.  I have all of the normal stress that everyone else has: balancing work with family needs, giving enough time and attention to each of my kids (not to mention my husband), finding time for friends, paying bills, and so on.  But for whatever reason my mind doesn’t let things go like it should.  So I manage with medication, meditation, and the all popular…therapy.

I guess being on this side of the computer gives me strength because I am the last person to initiate a conversation with someone I don’t know.  You’ll never catch me being the center of attention. But I’m comfortable sharing my story in this way.  I hope that readers can gain something from reading our experiences.

I wasted a lot of money and time trying to figure out why I couldn’t breathe. I was short of breath one afternoon and suddenly passed out.  It scared my husband half to death so he insisted I go to the ER.  They checked out everything and sent me home with paperwork for what to do for chest pains and an inhaler for “adult onset asthma”.  I went to several appointments at an asthma and allergy center and was on different medications and inhalers but never felt better.  The reason that the doctors misdiagnosed me was because I wasn’t having panic attacks that would lead to these feelings.  I would feel short of breath all the time.  I would try to take a breath but felt like I just couldn’t quite take a big enough breath.  So I would keep trying but as I would I’d start to get nervous because I wasn’t able to.  So then the vicious cycle would start and I’d end up with a racing heart, shortness of breath, and a flushed face.  Like I said it wasn’t like I was sitting and thinking about some major life decision I would just be sitting and watching TV or reading.  This would happen several times throughout the day.  No matter how many times I used my rescue inhaler.  I finally switched asthma doctors and the guy looked at me and said “you don’t have one single symptom of asthma. The doctor you were seeing was treating you for something you don’t even have.  You need to see a psychiatrist because you are having anxiety symptoms.”  I figured I’d give it a shot.  I was diagnosed with generalized anxiety disorder.  After only two days on the medication I was breathing again without problems.  I really was shocked because I had decided that the psychiatrist didn’t have a clue what she was talking about.  Well, I was wrong.  Turns out that all the stress my body is under is manifesting itself physically.

I’m doing better now.  I’ve come to terms with the fact that I have to see a psychiatrist and that I require medicine to function. Oh well-that’s life. I used to look over my shoulder when I walked into the doctor’s office because I was embarrassed and worried what people would think if they saw me going me in there.  But a year I’m ok with it all.  This doesn’t make me a worse mom, wife, or daycare provider.  I’m taking care of my body and mind so that I CAN be good at all of those things.  Hopefully one day I can get off the medication and regulate the fight or flight emotions on my own but if that day doesn’t come I can just continue to thank God for the medication that helps me to feel like I’m not drowning J

I wanted to blog about this because I was watching Jersey Shore this week (yes I watch it and I actually love it) and Vinny left the shore house because he was having trouble dealing with his anxiety condition there.  He tried to explain to his roommates and employer what it was like.  His roommates tried like good friends do to cheer him up.  They thought that taking him out and talking to him would help get him through it.  But unfortunately it’s just not that easy.  It takes a lot of work to get through the rough patches and going out on the town just won’t cut it.  However, that doesn’t mean that people with an anxiety disorder don’t need friends in their life or people to try and help them through it.  In my case, it’s just something I have to work through on my own.  I’d love to just flip a switch and be better but it’s more complex than that.  If you ever have any questions about it, I’d love to answer them! There’s nothing worse than suffering in silence because you are afraid of other’s reactions and judgment.

Update on today’s dermatology appointment

I listened to my gut.  I almost always do. But with the skin cancer I’ve let the dermatologist(s) call the shots.  I should know by now that when I get that nagging feeling I need to listen to it. This time I did.  I had two appointments scheduled to get my skin biopsied. I set one with my first dermatologist and scheduled another with a different dermatologist that I saw years ago when I was in my 20′s.  Thanks to a cancellation I was able to go see Dr. Buxton at Free State Dermatology in Lawrence who I should have called when I found the first suspicious spot in July.  Instead I wasted my time with two other doctors that I never felt 100% comfortable with.

Today I saw Dr. Buxton and I left feeling completely comfortable!  Finally a doctor that listens to MY concerns and ideas.  I brought with me my records from the two previous doctors.  The nagging feelings I had were validated today. One of the three tumors I had removed by my first dermatologist didn’t have clear margins like the dr told me it did.  Right there in black and white on the pathology report it said that the ”tumor extended to margins of tissue”.  In other words, there was no clear margin of skin.  Now it would do more harm than good to cut back into the area to try to remove more tissue. So I get to watch and wait.  The other thing that bothered  me was that the second dermatologist did a core biopsy and said he thought they got all the cancer.  Like I thought, there’s no way of knowing since they don’t look for clear margins on a biopsy.

I had one spot on my nose biopsied today and he said that when they call back in a week or less that I would probably hear that it is indeed basal cell carcinoma. Not because it looked like it, but because I am 4 for 4 in identifying the tumors.  So now I wait.  But I’m not nervous, just ready to get it out and move on.  This doctor is going to discuss treatment options with me when I come back in for the excision.  He wants me to consider using a topical chemotherapy that will kill the basal cell that is just below the skin’s surface.  It won’t kill the cancer that is in the deeper layers but at the very least it will prevent me having to get so many cut out.  That’s the great news! Someone is thinking outside of the box. I’m so dang sick of the watch and wait approach. The only bad is the side effects of the treatment. It doesn’t get absorbed by my body so I won’t lose my hair or have any of the other symptoms that cancer patients have to deal with when they receive chemo through a vein or by pill form.  My skin will turn red, become painful and will likely swell.  It will itch and possibly ooze-yummy!  My face will crust over which will look fab but I couldn’t care less.  I like the Mr. Krabs look.  I’m just so happy to have a plan.  So I’m going to think it over and let him know next week when he calls.

Just wanted to update everyone and thank you for your prayers.  I appreciate them more than you know

Previously known as Little Miss Sunshine

Take two- grumble grumble grumble.

When asked what my hobbies are I used to answer “reading”.  We all need an activity to turn to when the real world gets to be too much.  The shift from reading for fun to reading for research purposes took place after D was diagnosed with ADHD in the 2nd grade.  Up to that point we had made excuses for his bad behaviors.

Our story in a nutshell: I had D when I was in a senior in high school.  I went straight into college while D was still a baby and in order for us to support ourselves, D’s dad (my husband now) worked two jobs.  We never really saw each other since he would work during the day and I was going to community college at night. We each had our own parenting style and it wasn’t an issue until I graduated. We had both formed our own way dealing with D and unfortunately, it wasn’t the same.  So we chalked his tantrums up to lack of consistency.  Then a lot of changes took place.  We moved to a new town, I started my own business, he began Kindergarten and then there was the birth of his brother.  Again we explained away his tantrums.  By 2nd grade though when his teacher suggested that something wasn’t quite right we couldn’t deny the issues any more.  He has never acted out at school but he would shut down while in class.  She would give a series of tasks and he would get caught up on the first one and then shut down because he was overwhelmed by the list of things he was being asked to do.  After all the forms were filled out, assessments taken, and his intake evaluation he was diagnosed with ADHD. We saw immediate changes in his school work.  Even his handwriting went from illegible to neat!  But then the anger got worse.  It wasn’t normal for a child to go into a rage because his hotdog bun ripped.  We assumed it was a side effect of the medication but apparently that wasn’t the case.  Once his brain slowed down due to the ADHD being managed, other behaviors and issues appeared.  So I read books, magazines, journals, and blogs to learn all I could about what might be troubling him.  Reading was no longer fun.  It was work.  But I wasn’t going to sit back and let him spiral downward while we waited for the doctor to figure out what was going on with our son.  So I read, and read, and read.

Fast forward to today- after countless hours of individual therapy, family therapy, anger management class, behavior modification exercises, a dozen medication changes, and so on, we still have the same kid.  When I toddler has a tantrum you can pick them up and put them in their room or redirect them fairly easy.  Not with a teenager.  So I keep looking for answers to help him learn how to recognize when he’s reaching his boiling point, what to do once it starts, and how to hopefully keep it from happening.  Sometimes you look at so much material that you just need to escape it all.  For me, music is that escape.

I have music on almost all the time. While I’m cooking, cleaning, driving, and even while I shower.  I love when a song comes on that is exactly what I need to hear at that moment.  I have 250+ songs that were on shuffle and the FIRST hat came up was Stand by Rascal Flatts.  The song spoke volumes to me.  The lyrics that touched me were:

Stand by Rascal Flatts

Cause when push comes to shove

You taste what you’re made of

You might bend till you break

Cause it’s all you can take

On your knees you look up

Decide you’ve had enough

You get mad, you get strong

Wipe your hands, shake it off
Then you stand

You have to get mad, get strong, and stand in life.  But when you are repeatedly knocked down again, and again, and again it gets harder to get back up.  I always tell people that I just put one foot in front of the other.  This is true.  Some days are hard though. I’m tired, weak, utterly exhausted.  I feel like I’m trying to walk through molasses with cement shoes on.  I want to stop putting one foot in front of the other.  I’d rather just sit down and quit. But that isn’t an option. My son needs me.  Correction- my SONS need me.  So I’ll keep pushing on.

The point I’m getting to- yes I know you doubted that I actually had one….is that this life I live isn’t easy. No one’s is.  But I can’t always be a freaking ray of sunshine.  There isn’t always a silver lining.  Heck, I don’t even want to look for the lining some days.  This blog allows me the freedom to vent and not have to put on my happy face.  If I was Little Miss Sunshine I could share insightful wisdom and cheer with those who read my blogs. I told myself that I would be more positive in 2012 because I didn’t want to be depressing to others around me.  Some days it takes all I have just to muster up a “fine” when asked how I’m doing.  So if you’re looking for cheerful, you’ll have to move onto another blogger. This one just isn’t.  I enjoy reading other SN parents’ blogs about their lives and their kids.  More and more lately I am reading about meltdowns, IEPs, and medication issues.  Could it be that it is just too hard to be Little Miss Sunshine?  I think it comes down to this: life with a special needs kid(s) can be pretty sucky. Most days are stressful, some are frustrating, and the happy ones are sporadic.  So you’ll have to excuse my Negative Nellie attitude. My writing allows me to vent so I can keep getting back up again….to stand.

This is the song that doesn’t end…

Reality has a way of bitch slapping you upside your head when you think things are going well.  I’m glad God has a sense of humor because life would just be too dang boring without it.

I made the mistake of telling a friend on Thursday that I was so tired of having my husband working out of town.  That having him gone overnight throughout the week was draining on me and stressful for all involved.  Well, later that very day the problem was solved. He was laid off…again.  Laid off from the job that was “guaranteed to be 40 hours a week through March”.  The kicker? January 1st our insurance begins.  Finally!  The same insurance policy that requires that he works a specific number of hours per month to stay eligible.  It’s almost like we are given something and then something/someone (whatever you believe in) steps in and says, “Not so fast! Gotcha!”  We are eligible for the month of January so I will be filling prescriptions without paying out of pocket, getting my face biopsied with an insurance policy to help me pay for the treatment, and getting the boys in with their dentist.  All the things that have been put on hold.  If all goes well my husband will get back to work soon and we won’t lose our coverage on January 31st.

I hope those of you reading this don’t take what you have for granted. I hope you don’t have to decide between money and getting the medical attention you need.  It’s a horrible feeling to walk on eggshells hoping that no one gets a broken bone or needs an ER visit.  If you are in our shoes, you know what I’m talking about

I have to be honest and say that this year has been one hell of a bumpy ride.  I guess the bad times teach us to appreciate the good times so much more though.  Life isn’t easy for anyone and I know that there are many people with life struggles that are so much worse than ours.  So on this last day of 2011 I will try and remind myself that life is a journey.  2012 will be an adventure and although I’m not energized and ready to take it head on, it’s coming ready or not so I better buckle up.

I hope 2012 is great for you and doors will open that lead you to the things that make you happier than you’ve ever been.  This silly blog keeps me sane and I plan on blogging more in the next year to come.  It makes me happy Happy New Year friends!