“How to be a HAPPY special needs parent”

Working as a team.

  1. My husband and I came up with a genius sleep schedule, and may not work for everybody, but to keep everyone happy (including Mommy) sleep is important. Since I am a stay at home mom I get up during the week days at night whenever Conner is having seizures, or whatever the issue is. On the weekends my husband takes over Friday and Saturday night. I use ear plugs to have a quiet peaceful sleep and even though it’s only two nights, it does make a huge difference!
  2. Stop keeping count of who last did what. My husband and I have done this a lot in the past. “Babe, can you please give Conner his medicine?” “But I fed him all night I thought you would do it.” “But I have to take a shower and get ready to take him to the doctor” STOP IT! All that matters is, is you are each equally contributing to your child’s needs. This will save a lot of arguments! 😉 If you know something needs to be done, why not buck up and just get it done if you can.
  3. Having disagreements when it comes to your child is only natural, but its best to express your opinion lovingly. When Joel and I were new special needs parents, Joel thought I was over reacting every time Conner did something weird. I sat him down and told him WHY I did this. I explained to him that the constant worry I was experiencing was taking its toll, and the only way I could cope was to make sure I did my very best at being in tune with Conner and if I was over reacting, I felt that it was better to be safe than sorry. After a while Joel saw that sometimes if I hadn’t been worried about it, things could have taking a turn for the worst. I don’t mean the wife is always right, sometimes the father can be right too lol, there have been lots of times when Joel had to explain how he felt about a situation. Give each other a chance to speak up, but never belittle each other in front of family, friends, or medical staff. Stay on the same page as much as possible. Come up with a plan for each situation that may arise. It will help things go smoother. That I promise!

Say no! Those of you that know me…you are going to think “Huh, she should listen to her own advice!” This is so true, but I have learned that when I say “No” to extra things I know I am doing myself a favor. I love helping people out because it helps me get my mind off of my own stress, and I know people appreciate the help! There are times though I say “Yes” too often and I end up becoming overwhelmed. So on top of taking care of my special needs son, my 4 year old daughter, being a wife, and a busy Christian (Jehovah’s Witness), I choose to put too much on myself and I just crumble under the pressure. DON’T DO THIS TO YOURSELF. Know your limits. Your friends and family will understand…

Beautiful inside and out. To begin with, being a special needs parent automatically makes you beautiful inside. What about outside? I’m not talking perfection here… BUT! Have you noticed when you put extra effort towards your hair and makeup it actually benefits you more than others? (Of course, I am doing everyone a favor by putting my face on, otherwise I would be ran out of town with pitchforks lol) I have noticed whenever I take a few extra minutes on my makeup, I feel at least 2x better than if I don’t. There is nothing wrong with sweats, messy buns, and naked faces! I am all for that! Try dedicating more time tomorrow for getting ready and see how you feel.

Romance. Why is romance important? Well that should be obvious! See my other blog…http://onerummymother.com/2015/01/13/never-neglect-date-nights-again/

Quiet time. Of course you all know I am a HUGE Quiet time advocate! See my other blog….http://onerummymother.com/2015/01/21/mommy-needs-quiet-time/

Ask for help. Don’t ever be ashamed to ask for help. We all need help time to time. I couldn’t be a special needs mom without the help of my family, friends, and support groups. Knowing you have people there to help you will put your mind at ease. If you keep trying to take on the world alone, you will fall apart, but with support, your peeps will keep you strong when you most need it. Even when you don’t need them, just knowing they are there for you can be really comforting.

Night out with friends. I try to make this a monthly priority. For you special needs moms and dads, you have got to take time away from home to be with your friends, and try your best not talk about your kids. Though it may be hard because they consume every second of the day usually and love them so much, but having some normal conversations is healthy and it’s okay, don’t feel bad. Remember, if you aren’t happy then your kids won’t be happy. Make time for you and your friends to just hang out.

Online support group. Since my son was first hospitalized I connected with other parents online via Facebook, Inspire, etc… The support was at times overwhelming! I would post about a bad day and I would instantly have over 20 comments posted. All to encourage and to keep us going. At times, I know you agree, you don’t even answer your family’s phone calls. Somehow getting online is my favorite way of receiving support. Not that my family doesn’t give great support because they do, but accessing the internet and talking with other parents saves my voice from cracking and emotional break downs over the phone, which I avoid at all costs. LOL

Dedicated family time. Family time, I know, can seem rare because of all the stress from therapy, doctor appointments, just everyday life with a special needs child but just take a moment to clear your mind and ask yourself these questions “How can I be happy?” This is one of my favorite quotes “Happiness is letting go of what you think your life is supposed to be like and celebrating it for everything that it is”- Mandy hale. We get so caught up with our busy lives that we forget what life is all about. My favorite thing to do is just sit and watch my kids play on the floor. I always think to myself how much time flies. I have to gobble up all of this cuteness and enjoy time with my family. We shut the TV off, and our phones and just relax, and listen to your kids play. That is how I celebrate the life I have. I listen… Also see http://onerummymother.com/2015/01/20/how-to-find-happiness-after-life-hands-your-family-lemons/

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Never neglect date nights again

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“I’m too tired, let just stay home tonight” I say this all too often. We become so wiped out with trying to have a good life and that we actually forget to have… a GOOD LIFE! It’s time to shape up, get up, dress up, and go out…

Keeping your date nights a necessity will keep your marriage strong. What do you think happens when the husband and wife work all day, spend their days apart, and even when they are home, they are on separate ends of the house busy doing different things? They forget who their spouse is, they can even forget who they are as themselves. Whether you have kids or don’t, you will always find something to distract you and take your time away from your spouse. This I promise.

Schedule.

Sit down with your husband and look at each other’s schedules. Put date night down in pen! Don’t let anything come up.There’s nothing more disappointing that receiving a phone call from your husband at work… “Hey, Bill needs my help doing something tonight so maybe we can schedule our date for another day” No! If you MUST reschedule, sit down right then and reschedule it. Your spouse should ALWAYS come before your friends.

Don’t resent your kids.

Make sure you have a baby sitter scheduled to watch your kids. Always have a back up sitter if they cancel. Otherwise you may spend your evening at home resenting your kids. How awful is that?! lol

Save Money.

Dates these days are expensive! Our local movie theatre is $10 a ticket. Then you have to add up all of the snacks and drinks (Pshhh… I don’t sneak in dollar store snacks…..I don’t know what you’re talking about…) Check your area for a dollar theatre. Try to find a restaurant that offers 2 entrées for $20. Apple Bee’s has awesome deals for date night! Don’t just say “Oh we don’t have the money” You have to put forth SOME effort! Look online for local deals and discounts! Here is the link to your local movie times, hope you find something good to go see 🙂  http://www.fandango.com/

Save up.

Like I said before, dates can be expensive. If you are wanting to do just a simple nice date or something more elaborate, then you might have to start saving for either plan. Never just plan on “having” the money. I want you to go get an envelope right now…go do it….NOW! lol. Now grab a marker. Write on the back, “Date Night”. Inside of this envelope you will put in $5 – $20 per paycheck. Let’s say you and your spouse get paid twice a month each. Even if you just put in $5 a pay check that comes out to $20 by the end of the month. Go have some drinks somewhere!

Date ideas. 

Pack a Picnic. Rent a paddle boat for the afternoon. Mini Golf. Bowling. Poker night. Roller skating. Spontaneously get in your car and drive nowhere in particular, and spend the day there. Take your spouse to test drive their dream car. Go for a Hike. Sunset picnic. Attend a concert. Play pool together or against another couple. Movie Marathon. Make your own fire pit together and roast marshmallow’s. Camp in your back yard. Board Games. Pick a series of movies and cuddle up with popcorn (Cheap, I like it….). Take your husband to a brewery (I know mine would LOVE that). Stroll through a farmers market.

Statistics.

The percentage of married individuals, over the age of 18, who respond that their marriages are “very happy” has gradually declined over the last four decades, though the numbers have leveled out in the past 20 years.  The most recent studies show that 63.1% of men and 60.7% of women classify their marriages as such. We have to remember to take our marriage seriously. Think about the reason you married them in the first place? Maybe you both have changed so much…even if that’s the case take that as an opportunity to rediscover each other.

“Always strive to give your spouse the very best of yourself; not what’s left over after you have given your best to everyone else”- Dave Willis

Truly…my Prince Charming

Once upon a time in a land called “Middle school”. There was a boy with beautiful big Chocolate brown eyes and beautiful tan skin, a jaw made of perfection. I spotted my Prince Charming in 8th grade. It was the first day of school.

My friends and I stood around in the lunch area acting stupid as usual, but my attention quickly turned to this gorgeous boy. There was a way he walked and the way he talked, he seemed absolutely perfect. He whisked past me and left my heart pounding harder than I had ever noticed before.

I leaned over to my friend and said quietly “Who is that?” My friend asked around. “I guess people call him Doty”. And that’s where it all began. Being the 13 year old that I was, I would dream about us holding hands, our first kiss…you know…all that cute innocent stuff.

He started getting the reputation of the “Bad Boy“. Of course that made me like him even more! My friends helped me out with gathering information, like what he was in to, and what classes he was in.

I was sitting in art class, when one day he walks in….”oh my gosh….are we really in the same class? Okay…keep it together” I thought. I got nothing done in that class. I remember sitting down at the pottery wheel and my teacher walking by. She leaned down and said, ” You’ve been sitting here for a half hour and that’s all you have accomplished? Quit starring at boys and get to work.” My face turned 50 shades of red, but luckily Doty didn’t hear, because LIKE obviously I would have just DIED!

Doty finally started to notice me. I wrote him a note about how I had a dream that he asked me out and I said yes. Which is obviously a lie. I just felt like I had to give him a little nudge…or a shove! Boy’s at 14 seem to be pretty oblivious!

My best friend and I were sitting in art class when Doty’s friend walks over. He sits down and says ” Doty wants to ask someone out, but he won’t tell me who.” So I start freaking out inside, like any teen girl would!

We begin to walk towards our next class. “Hey!” Doty yells after us. We both look back and he begins to walk towards us. He grabs my friends arm and says “Can I talk to you for a minute?” I’m thinking that he’s probably making sure I will say yes when he asks me out. Then they hug……and they hug……and they hug some more…..and I’m thinking, hm…okay that’s a little weird.

My friend walk’s back over and proceeds to inform me that Doty just asked her out! WHAT?! I was devastated. It was such a silly thing, but at the time, my heart was shattered and I would never love again. (Oh the drama!)

I spent the rest of the school day hiding in the bathroom. My friend comes in to talk to me and says if you don’t want me to go out with him then I won’t. And at that point I thought ” Why did you even say yes in the beginning?” She knew how much I Iiked him.

A dreadful week goes by and finally my friend approaches me. “I broke up with Doty for you”. Well that made me feel like poop! Like I MADE them break up. My friend continues to tell me how she informed him how much I liked him.

” You’re late, so here’s a detention slip” states my math teacher. In my head I say “YESSSS!”…wait. That’s not a normal reaction for a kid receiving a detention slip?! Oh….Doty has detention. I get it now…Did I mention I was desperate? Yeah we held three conversations while in detention and it was pretty epic at the time.

Month’s go by…we start to hang out in the same group of friends. Our art teacher switches our tables around. Maybe she saw my desperation, or was just blind and decided to put me and Doty at THE SAME TABLE! We are sitting across from each other and he looks up at me with his chocolate brown eyes and his hair slightly in his face, ” Hey, I was wondering if you would go out with me?” SHUT THE DOOR, AND THE BACK DOOR! I sat there non responsive for about .2 milliseconds YES!!! I mean….yes…

It was so hard to contain my excitement. The excitement came to a halt when I realized, this was the last day before winter break! So at this time I’m 14 and Doty is 15. Neither of our parents would ever dream of allowing us to date. 2 weeks and 3 days later (yes I remember, the exact days, don’t judge!) I get a phone call from my ” Boyfriend”. We start talking about what we like to do and what’s fun. The conversation is going great until he says ” Well I actually called so I could talk about something with you.” Totally blind to what those words actually mean. He decided that it would be best to be friend’s because we aren’t allowed to date outside of school and because I was trying to gain a relationship with God, (Jehovah, Gods name) that he didn’t want to interfere.

I swallow and act all cool. ” Yeah, I totally agree”. We hang up and I bawl my eyes out. Pretty much the rest of the year I watched him flirt and go out with different girls. I became so furious and jealous. When 8th grade graduation rolled around. Him and this girl were “Going out”. They announce her name for her diploma and he yells “I LOVE YOU” …ugh heart break!

The graduation dance begins and my group of friend make a circle on the foggy gym floor. We begin spinning in a huge circle to the song “Graduation” by Vitamin C. I can’t help but torture myself and watch him dance with her over there by the DJ. I ended up in the bathroom, crying…all over again! So much for a good time…

It’s a pretty ridiculous story. At the time of puberty, there are so many things changing. New feelings are being discovered too. I was so emotional, and dramatic over everything!

In high school we both had separate lives. We dated different people. We saw each other in passing. Sometimes when I would see him I would still get butterflies but I trained myself well and quickly ignored it. I ended up leaving public high school and began to attend a charter school. I had my heart broken pretty bad my senior year.

“1 new message” I got on myspace (when it was still cool). I opened my inbox. I had a message from Doty! It read…” Hey I just wanted to see how you have been doing. I have been doing better. I started studying the Bible again. What’s new with you?” Well at that time I had also started up a Bible study and so this sparked interest because we both were making a goal to study.

After a week of great conversations, we decide to go to Meeting together. We call our place of church the “Kingdom Hall” and the service’s are called “Meeting”. I never thought we would do that! So I went and picked him up. He came out wearing a dark purple shirt and a silky red Tye. He stepped down the step’s of his house and walked over to my car. He looked at me over the top of my 2003 Oldsmobile Alero and said ” Wow you are gorgeous!” And the butterflies finally arrived! I could barely concentrate on driving through town. Meeting went great (although, sort of strange) and then we decided to get hamburgers at “In n Out”. Of course I had one bite, probably due to the lump growing in my throat! He continues to devour his plus mine. What a pig, but back then I just stared at his jaw as he chewed. Yep, I’m a weirdo.

From that point I knew there was something special, haha! We spent every day together. We both had grown so much since 8th grade. The next day he came over and brought the movie, “Across the Universe”. Not one of my favorites but I didn’t care. He turned my face to his and kissed me slowly. I remember giggling because I had waiting for that moment for so long and it finally happened…I think when you wait for something so amazing to happen, you almost are numb to it when it finally comes.

Two weeks into our relationship he tells me he loves me. At the time I was terrified to say it back because I had been hurt so bad by my previous relationship. I said it back only to not hurt his feelings. Of course I couldn’t sleep for the following nights. I just laid awake for hours day dreaming about the two of us. By this time, Doty wants me to call him by his first name “Joel

Two months into our relationship, Doty decides that we need to talk about our future. He explained that he eventually wanted to marry me, but he wanted to finish his Bible study and get baptized first. When you’re in love it completely blindsides you and everything else doesn’t matter! Obviously looking back, we BOTH should have finished studying first.

Three months we have been dating. We decide that we will be getting married sooner rather than later. One day we are at the mall. We are both sick of waiting. We just want to be with each other every second of the day. We get up and we walk into Sears. A ring in the clearance section grabs my attention. It was $120. It wasn’t my first choice but it would do for now.

We began planning our wedding for June. The day of our wedding was awesome. Regardless of anything irritating me or stressing me out, I stayed focused. I stood at the door on my grandma’s porch. It was a beautiful setting for an outside wedding. The 5 acres of pasture was green and luscious, and the time of day was perfect. We were just in time for a sunset. We couldn’t have timed that better. I stared at my grandma’s temperature gage hanging on her porch. My mom walked up to me and whispered, “Ready?”. MORE THAN EVER! I was so sure it was right, there was no questioning it.

I walked down the isle with my mom. The ceremony began and we just gazed at each other. Our vows were a fog. We had practiced them beforehand so we knew what we were agreeing to, but we were just so happy, nervous, and too excited to actually pay attention to our words. “You may now kiss the bride”. FINALLY! The bag pipes began to play by my friend Dillon. We walked back down the isle and came to a sudden halt and hugged each other so tight. I was in shock. I kept thinking in my head…”How often does your long time 8th grade crush become your husband?!” I knew it was rare which made the day even more special than I ever had dreamed of.

We spent our honeymoon on the west coast, exploring nature…and each other....Hahahahaha! Our first 3 months of marriage was pretty rough. Neither of us had lived on our own. We both were discovering what it meant to be responsible adults. I had become pregnant with our first baby while switching birth controls. Sadly we miscarried, and the only way I could heal was to become pregnant again. Until our daughter LaCie was born, there was a lot of fighting and crying. Joel had lost his job and we struggled tremendously.

The day our daughter came into the world, changed our entire marriage. It glued us together and made us strong. We both loved being parents so much that we decided to have another baby two years later. We became pregnant right away. Then we learned that our son had a Rhabdomyoma tumor inside of his heart. He began fighting for his life. The whole experience bonded us even more! I’ll talk more about my pregnancy with Conner in another post.

Since then, we have had to hold each other up in difficult situations time and time again. We go through rough periods like any marriage but the good periods make up for all the hard ones. When things are bad with Conner, I am usually pretty stressed out and tend to not be affectionate, until I break down and need him to hold me. No matter how cold I may be during a difficult situation, he is always there for comfort and support.

Joel Doty….truly my Prince Charming.

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