Mean Mommy

Things have been rough lately.  Luke has been struggling. I have had the privilege of being the one to follow through with what I say.  And.it.is.hard.  Sometimes when he is so upset and screaming and yelling and telling me how mean I am because he is upset at the discipline, I look in his eyes and this is what I see (see above picture).  This tiny little guy who is just 2 years old.  My heart breaks on the inside.  I hate it when he cries, or feels pain or hurts. 

I know that pain and struggle are apart of life.  I also know that Luke and Grace have struggled in ways I will never understand.  I want desperately to make it better.  Everyday that Luke goes to school, he deals with challenges I never had too.  You see, I lived a fairy tale school life compared to what Luke faces.  He has to struggle through the many sensory systems just to make it to school (clothes, socks, shoes, toothpaste, hair brushing, etc.)  Then while at school he faces the bright fluorescent lights, auditory stimulus, trying desperately to pay attention, keep quiet and still. All things that are so incredibly difficult for him.  All things that I never had to think about. 

Grace has her own set of special needs.  I haven't really spoke much about hers as I am still figuring them all out.  I do know she goes to school each day and struggles to be understood by her teacher and peers.  Her struggle with speech and speech sounds makes understanding her difficult sometimes.  One of her strategies is to just "give up" when she can't communicate effectively.  I have to come up with ways to get her to TALK even if it is difficult.  I worry about her in a class of 28.  She deals with more on a daily basis at school than I ever had to. 

Part of being a parent is training your children.  I have so many hopes for my three children.  I hope that Luke becomes whatever his heart desires.  It's my job to give him the tools to help him become whomever God has planned for him.  I hope for Grace that she excels in music and art, finding expression in make-up, nails and hair as she already shows so much interest in this area.  That she continues to blaze her own trail and never apologizing for the incredible girl that she is.  I hope for Isabella so many wonderful things.  I am still getting to know her and her personality.  God has a purpose for her and for Luke and Grace.

I also know that in training them it requires correction.  This is difficult for me.  It is challenging to know how much of their behavior is linked with their special needs and how to address the behavior.  I especially struggle in this area with Luke.  He had a really rough week.  He lost his bus privileges for a week because of his behavior on the bus.  He lost his snack sale money because he yelled at me.  He spent an evening crying/screaming because he was having a difficult day and just not knowing how to self regulate.  My heart broke this morning driving him to school.  One because he couldn't ride the bus, and two because he was very upset with me pleading with me to give him his snack sale money.  "Your the meanest mom ever!" he yelled at me over and over. Stone faced, I kept telling him why I couldn't give him his money.  I walked to his classroom, so that I could tell his teacher what happened this morning.  He clung to me as I tried to walk out of the classroom begging me to bring his money back to him.  I kissed him with tears running down his face telling him how much I loved him and I would be waiting for him when school was over.  I took Bella back to the van, buckled her in and sat down and cried.  I cried and cried and cried.  Meanest Mommy ever!

People have asked me what I do when Luke rages or how I handle the fits that Grace can throw.  The absolute best way I know how to is to remain calm.  I use whatever strategies I can to help them get through it.  With Luke walking away, ignoring or letting him scream through it can help.  I also am using some sensory type strategies to hopefully help him before he escalates. 

I admit defeat!  I advocate!  I get help!  I was reminded this week from Luke's previous social worker that I don't have to have all the answers.  Most people think that when you adopt...they are yours now...and everything is going to be rainbows and lollipops!  It.is.not.true.  They are always going to have connections to their birth families (especially their genetics).  You blaze a new trail with them.  Previous attitudes and values can "go out the window" and you embrace new ones and see things in a different light.

I use my support system!  I have an incredible support system for Luke.  Just this week I talked with his previous social worker Beth, Joy his OT (he will be starting back to OT next week), he had a doctor appointment, Family Solutions (another therapy option for Luke), a friend that has adopted kids from foster care, my sister Katie who is always there to listen, and a good teacher friend that has a special needs son. 


People say I am an amazing mom...I heard it this week a few times.  It is so nice to hear, but to be honest I don't feel like and amazing mom....I just feel like a mom with AMAZING kids! 

Miracle Baseball

It was my son's first baseball game ever.  There I was with my Nikon strapped around my neck, video camera on my hand, and my phone camera in my pocket, trying to keep track of my girls and crying all at the same time. 

You see this little boy has had the dream of playing baseball for a LONG time.  He has been asking for at least 3 years.  Well...begging is a more accurate description. 

Unfortunately a regular baseball league would not be possible for Luke.  His disabilities make the competition of regular play and social aspects of the game just too difficult...and while I understand that the regular leagues are just supposed to be fun...it wouldn't work for Luke.  His nature to challenge and question everything along with his limited attention span wouldn't work with his peers without special needs.

About 2 months ago, Luke came home with information on the Columbia River Miracle League from is OT at school.  Bless Ms. Kate for letting me know about this incredible program!  I promptly signed Luke up!  This league lets ANY child, no matter their disabilities play baseball.  The focus isn't on who can play first base, or who can throw the most accurate, or even what the score is (they don't keep score).  It is about FUN and giving kids the opportunity to experience playing on a field, running the bases, hitting the ball, wearing a uniform, while being ENCOURAGED by both teams! 

Today the mayor of Vancouver threw out the first pitch.  And the Evergreen High School Soccer team came to be buddies with the CUBS (Luke's team).  Each baseball player gets a buddy.  Luke's buddy today was Connor.  Connor did everything along side Luke.  He went up to bat with him, ran the bases with him, was along side Luke as he was fielding the ball (or every ball for that matter).  We need to work on the sharing aspect. :)  Personally my favorite play of the day was when Luke decided to run the ball to first base instead of throwing it.  Oh well...no one cared, and in fact told Luke "nice hustle Luke!" 

Imagine how my Luke must feel now... because today...when HE got up to bat...and HIT the ball...the crowd ERUPTED with CHEERING and CLAPPING because HE HIT THE BALL! "GO LUKE! RUN!!!" 

ALSO imagine how my Luke must feel because when he decided to get off first base to run over to me to excitedly tell me all about his "first" BIG hit, no one YELLED at him or told him NO or got UPSET.

NOPE..they CELEBRATED with him this huge VICTORY, which to LUKE is EVERYTHING and to anybody else wouldn't seem like much.   

Kids with disabilities are still "KIDS".  They have the SAME dreams as kids without disabilities.  Just..the road that they take to reach their dreams is different.  It may take the form of a 1 hour game where everyone bats each inning, everyone hits each inning and everyone makes a home run each inning.  The game is really 2 innings long.  No one worries about the score, or strategy or relief pitchers or even pitching from the mound for that matter.  I think Luke's biggest concern was what they were having for snack after the game....note to self...our snack turn is Sat. May 12. :)

It is true what they say..."it takes a village to raise a child".  I couldn't provide this "Miracle Baseball" experience for Luke even if I wanted to.  This was our neighborhood school reaching out to our family, connecting us with the community, so that Luke can have an experience like a "typical kid".  Because deep down...Luke is just a "typical kid" in an incredibly "special body". 

Spring Break Fun

Spring break always reminds me of being a kid.  My parents would most always take us on a trip to somewhere warm.  This year spring break was spent at home taking "day trips" around the Portland Area.  We spent the week making Easter crafts, going to Chuck E Cheese and Oregon Zoo, the older kiddos visited with Carol, they ALL participated in a big egg hunt and we ended it celebrating Easter at Mom and Roger's condo.  It was very fun and by they time they boarded the bus on Monday morning I was EXHAUSTED!!!  Here are some pictures that captured our week long fun.

 Luke playing outside on our own "play ground".

 Grace never passes up an opportunity to "pose" for the camera.

 Miss B just "hanging around."

 Bella channeling her Uncle D to win the video game!

 Grace riding the helicopter at Chuck E Cheese.

Luke bowling at Chuck E Cheese.

The 3 munchkins...

Grace dying Easter Eggs and Bella pretending to dye Easter Eggs with plastic eggs and cups provided by daddy.

Luke's final products!  Beautiful!

Luke and Grace before the Egg Hunt at Life Point Church.

Bella during her first egg hunt.

Grace and Luke with the Easter bunny.  Miss B wanted nothing to do with the bunny :)

My ADHD Wish List

I am back after a bit of a blogging break.  Last week was spring break, so we were busy with lots of fun kiddo activities (more to come with pictures on another post) same with Easter fun.  I just wanted to take this post to focus on a subject that has occupied most of my thinking as of lately. 

Before the break I received the kids report cards.  For the most part they were really great and the kids are doing awesome, but to say that everything with Luke is "rainbows and lollipops" would be a lie.  TRUTH...he is struggling...at home, at school, in life.  I have tried to take the laid back approach and wait for some of the issues to pass, but they haven't.  Sometimes it is best to face a problem "head on" instead of sitting on the sidelines.  With him it really is my motto to face things right away.  So over my last couple of weeks of Internet research I have composed a list of my favorite things that "if I had a bazillion dollars" would buy for him. 

ADHD  likes to co-exist with other disorders like Tourettes, OCD and ODD.  Luke has confirmed Tourettes as well as ADHD along with sensory, visual and auditory processing disorders.   I have noticed he is ticking more these days.  The tics always change and there is NOTHING we can do for him except let him tic.  You can't tell him to stop because kids who try and suppress tics often just "tic more".  I want so much for Luke...I want life to be easier for him.  I want kids to stop starring at him, or Luke to know appropriate social boundaries, instead of invading other's space. I want him to take more responsibility and to not argue as much.

So here it is...my dream list of ADHD helps for Luke....while they won't "cure" him, they would help make our lives better....



http://funandfunction.com/sensational-hug-tee-long-sleeves-motorcycle-graphic-p-2032.html
This compression shirt would help "ground" him and it feels as if you are getting a "hug".  The gentle pressure will help calm him.  Sometimes when Luke is all over...I gently press on his shoulders.  He always stops and sighs.  He loves pressure!  They make a whole line of children's compression clothing.

http://funandfunction.com/weighted-hat-cap-for-sensory-processing-therapy-p-1013.html
This hat would act the same way has the shirt. 



http://funandfunction.com/weighted-vest-blue-p-3.html
This weighted vest would provide sensory input allowing him to calm his body.


http://funandfunction.com/blanket-bundle-p-931.html
I would so LOVE a blanket like this for Luke.  No matter the temperature he always asks me for all his blankets put on him in a certain order.  The pressure/weight has the calming effect.


http://funandfunction.com/images/joki.jpg
If I only had a swing.....such and incredible therapeutic tool.  Swings are amazing.  How wonderful it would be to swing anytime of year and even on rainy days.  Did I mention we are turning our front room into a therapy room....more to come on that too.

http://funandfunction.com/therapy-putty-4-oz-p-532.html
Theraputty...a great hand strengthening tool for my little buddy who needs the extra input and work.


http://funandfunction.com/short-reach-slant-board-p-958.html
Slant board....how we could use you...ALL.THE.TIME.  Handwriting is such a chore for my little guy.  How great it would be for him to use this tool.

Well... there you have it. A few of my favorite ADHD helps.  :)

Defeat

I have cried at least four times today...ugh...it's been one of those days.  I don't like to complain, but I sure could use some encouragment. 

It started with an e-mail from one of the kids' teachers about the "story telling" that one of my children is doing lately in class (and at home for that matter).  This is my child...that until a month ago...was Abe Lincoln honest.  This is the second MAJOR offense in 2 days.  After reading the e-mail, I sat in the booth at Burgerville (Mark had taken me and Bells to lunch) crying my eyes out.  The tears just came.  I couldn't hold them back, and HONESTLY I really didn't care who saw me cry.  I felt like I could take on anyone at that point.  Bring it...let's see them do any better. 

My child, disrupted 20 minutes of class today with their "whopper" of a story (aka...lie).  I felt ashamed.  I have rasied them better than that.  We talk about honesty and truth.  It hasn't sunk in.  Mark and I handled the situation with firmness.  There was repentence.  I pray that the lesson will help them next time they would feel compelled to "tell stories."  There is no manual on how to raise kids.  Special needs kids.  Adopted kids.  I NEED one.  Especially today. 

Mark and I had some money set away to try and get away around my birthday.  We had a destination in mind, but alas, we can't go because it is too far.  This event today reminded us that if we are able to get away we have to stay within an hour of home.  We would have to deal with these types of situations or medical issues that would arise.  I cried...again.

I finally had the opportunity to take Grace to ballet today.  Just her and me.  I was so looking forward to just watching her.  On the way to ballet, she refused to talk to me.  I asked why.  No response.  Finally she squeaks out "I hate ballet...I am just too tired...I don't want to go. I want to play soccer."  I told her that she was going to finish the ballet season.  That we had already spent 250 dollars on Show case fees, costumes and pictures.  Sometimes we have to do things we don't want.  I dropped her off in class had to explain to her teacher her attitude and cried...again. 

I came home and got a call from someone who needed to complain about the information I researched and gave them on a dental school.  Apparently it wasn't a "good deal".  Whoops...sorry.  Fail.

Serving dinner, I spilled the chili all over the floor and then as I was cleaning it up, I stood up and smashed my cheek into the side of the cabinet.  I have a shiner now.  Fabulous!  I cried...hard.

Oh and the baby didn't nap today.  So I am waving my white flag.  I admit defeat.

Honoring Our 3 March Munchkins

This a video scrapbook of their last year. I played this at their birthday party. I hope you enjoy!

Make a video - it's fun, easy and free!
www.onetruemedia.com

5 Things About Being a Special Needs Mom

Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability.  That's about 10 million children in the US.

Luke is one of those kids.

He has several disorders.  Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs.  After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.

His disorders (or special needs) have caused medical and developmental problems.  He has been in physical, occupational and social therapies.  He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies.  He has been through more doctor specialists than I can count or remember.

Raising a special needs child, is a blessing and a challenge.  It is rewarding and trying.  It is inspiring and defeating.  It is like you can't have one without the other.  You take the good and the not so good.  I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that.  Many people will tell me what an excellent job I do with Luke, and how blessed he is to have parents "like us" but I often feel I am just so blessed to have him in my life.  I don't feel like I am anything special, and most days I feel that I am just "not good enough".  I yelled when I shouldn't have or didn't do enough activities with him.  I fail on so many levels, but I am human.  I am a mom.  A special needs mom.  Mainly though I just like to be known as...Luke's mom...(and Grace's and Bella's).  As a mom of children with special needs, I often feel a myriad of emotions.  I took this idea from another blog and wanted to share MY "real" honest thoughts about how I feel as a special needs mom.  Maybe you can gain some insight into how it is to be a special needs mom. :)

1.  I am tired...just being a mom is exhausting.  Especially to little ones.  However, parenting a special needs child takes things to another level of being tired.  On top of the "normal" parenting things you do with your kiddos you add into your schedule therapies.  While he may attend formal therapy once a week, there is practice and therapies to do at home several times a week.  We may visit doctors and specialists several times a month.  In February Luke visited the orthodontist 5 times.  In March so far he has been to OHSU for his eyes.  He will also go visit his primary care doctor this month too.  If its not the medical it is the educational.  I have had my share of battles with the IEP team and fighting with them to make sure that he is receiving what is written into his IEP.  There is a whole week in October I will never be getting back.  There is advocating for him in all realms of life and making sure each "player" is performing their best to give Luke everything he deserves and needs.  The emotional toll causes one to be tired.  I am a worrier by nature and I spend many hours thinking about Luke and trying to come up with possible solutions, new therapies, researching, praying. 

2.  I am jealous...I almost didn't put this one down.  I thought about it a lot and sadly it is SO true.  I would never want to admit this to anyone or let anyone see this side of me.  But I am being HONEST here. :) I am sure my mom sees it, but she displays such grace and never "lets on" that she knows.  I feel the pains of jealousy when I see boys Luke's age able to go on a retreat at church, and know that I couldn't send him without Mark and I.  I feel jealous of mom's whose children can play regular sports or have children that don't always finish last with physical activities.  I feel jealous Luke can't attend a private Christian School because they cannot meet his needs.  I feel jealous when other mom's can go away for the weekend without children.  (I know this sounds a little selfish, but I am not perfect and just being REAL.)  Recently...one of my closest friends went to Disneyland with her husband for the weekend, and when she text me I cried for 10 minutes (how pathetic is that?).  It wasn't because I was upset or mad.  I was very happy she got to go, as she had been wanting to for a long time..But I was just jealous.  I had the realization that "even if we were able to go financially" I couldn't...because I don't have anyone that I can leave all 3 kids with.  I don't know of anyone that would be able to handle the dynamics of the 3 of mine for 1 night away...let alone two or three.  Last time Mark and I went on a date with no children with us, (which was three months ago for 3 hours) I was so worried about the kids (mainly Luke) that I couldn't even enjoy myself.  My stomach was in knots.  Luke can throw some rippin tantrums, and has a difficult time with change in routine.  He can melt down easily when he is feeling anxious.  How did it get this way?  The last time Mark and I went away for 1 night, just the 2 of us was November 2009.  We could SO use a break to recharge, re coop, reconnect, but I don't know how to do that.  I am jealous of those that can and do.  Our relationship could use just some "us" time that doesn't include hospital food or going to the latest "specialist" together (but don't get me wrong...I am so grateful he is there).


3.  I feel alone... I went to a MOMS group at the beginning of this year.  It was a sweet group of ladies, very welcoming, but I only went once.  When I shared "my" story, of becoming a mom, I had 5 other moms at the table looking back at me like "deer in headlights." They weren't ready for the truth about foster care, special needs, adoption, medications, therapies, medical doctors, specialists.  They were more on the level of "so which grocery store do shop at?" and "what are your favorite brand of diapers?"  I am not saying this is bad...it is a wonderful group of mommy's...it was just not the "connection" I was looking for.  Which leads me to this point of "I feel alone."  Most days I spend completely alone (with my kids).  Marks works a weird schedule these days, so my really only adult contact is my daily phone call to my mom, connection with a therapist, a school teacher, a doctor or specialist.  I could use the support of other moms with children who have the same type of issues....I am sure there is some group out there...just haven't found it yet.

4. I am human...I am not a saint, even though well meaning people do try and tell me I am.  I have bad days, off days, days I feel like I am failing and think I am not doing a good job.  Being Luke's mom has really re-shaped my life in many, many good ways.  He has helped me discover who I really am.  I have realized that I am a lot stronger than what I thought.  I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot.  I still have dreams of my own...things I would like to accomplish.  A few dreams that have lingered since before I became Luke's mom.  Memories of the past.  I still love to get my nails done, shop and visit Starbucks.  Music helps...I love my iPod. 

5. I am scared...This one is difficult to admit too.  While I don't dwell on this thought too much, it is part of raising a child with special needs.  I am scared that I won't do something or find the right therapy for him.  I am scared he is going to be blind someday.  I am scared I won't know the right thing to say when we really talk about adoption and his history someday when he asks, if he asks?  I am scared I am not doing enough or that I am doing too much?  I am scared when he goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules.  I am scared that time is going by too quickly...moments are passing I won't ever get back.  Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?

My life is forever changed (for the better) by raising Luke.  He blesses me in ways that I can't explain.  When I look into his eyes, and I see how happy he is, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call him mine.  Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", tell him "no" or the million other things I do, I remember that God according to His plan choose us for that little boy.  I don't take that lightly.  I was called to this "position"...to take up my weapon and fight for those who cannot.  I know that the mere existence of Luke is a promise that God has a BIG plan for his life.  I really believe it.  So even though it may not look so pretty in the trenches, I am fighting.  I am real.  I am HIS mom.