Angelica Grace Designs Blog

Friday, July 29, 2011

MY HOW THINGS HAVE CHANGED

If Kenidi could verbalize her feelings right now, I'm guessing that these days she'd be packing Kross a suitcase and waving by to him as she booted him out the front door. She loves and adores her baby brother with all her heart but I honestly believe she is just now beginning to realize that he is here to stay and isn't going anywhere. In the beginning, he was like a new toy to her. We had small issues but she was pretty gentle with him from the get go. Because we have slowly but surely been noticing more aggressive behavior from Kenidi over the past year to year and a half, we knew that Kross's arrival would be touch and go with her as well. Over the past 8 months since his birth, I've watched her go from gentle to down right violent with him. We can't sit him down or look away from him/her for even a split second. Her aggressive behavior has not only expelled over and onto him but onto us and other people as well. We battle her hitting, kicking, spitting, biting, pinching, etc. What was once just a melt down when we went to leave the beach or a park is now an everyday occurrence and has caused our normal "out and about" life to come to a screeching halt.

As I sit down to type this, my heart hurts when I reflect back on how much Kenidi's demeanor has changed over the past year and a half. She really is a totally different child. We can no longer fly on airplanes or travel period because of the outbursts, aggression, and publicly displayed melt-downs that involve just about anyone within a 20 mile radius of us. We can't take her out to eat at restaurants or stroll along and hold her hand thru the mall anymore. If she is out and about, she has to be strapped into her special needs stroller. There is no rhyme or reason to her madness. We used to think it was an attention issue but now we realize these are uncontrollable outbursts where she will lash out at anyone within her reach. I was in denial for a long time...just believing and hoping it was only a phase. Ya know...the kind of stuff they pick up at school and bring home??? However, the behaviors have only increased. Each day she is growing bigger and stronger and it's becoming harder and harder for me as well as everyone else to manage her when she lets loose. I tell you all of this because just as I have in the past 5 years since beginning this blog, I'm writing to find therapy in the moment. By the time the evenings roll around each day, I'm physically and mentally wiped out. I've had numerous days of emotional spells where I just finally burst into tears from the exhaustion, frustration, and utter heartbreak as I watch our daughter act out in ways she is unable to control. Ways we aren't able to control anymore either. Kenidi is still the loving, affectionate child she's always been. However, there is a side to her personality now that is tough, harsh, and dangerous.

I had a neurologist in Miami last year witness a melt-down of hers and his exact words to me were..."You know there is medicine for this?" I walked out of his office, pushed open the handicap doors to the parking lot, looked at my Mom and swore to her with fury in my eyes that I'd never go back to that doctor again. I can remember how angry I was with his words. I couldn't believe he would suggest that I needed to medicate my child. Almost a year later, I now wish I would have headed to his advice then. I was in denial.

So...a big reason for our trip back to Indy this time was to have Kenidi seen by her Riley doctors here in Indianapolis. Brent and I took her and both kids this past Tuesday morning to her appointment with her neurologist. He was also the geneticist that ran the tests on Brent and I right after we were told of Kenidi's diagnosis back in 2005. After two hours in his office, Kenidi had reached her limit and was exhibiting full on meltdown behavior by the time he saw us. She proved to him, the child psychologist on hand, as well as a student resident doctor that she had the strength and ability to take everyone of us in that room on and then beat the hell out of anyone she had the chance to. It's sound rough and it was. Thankfully though, because what she did in front of the docs, we didn't have to do too much explaining. It was clear that medicine was necessary. I left the hospital that day with mixed emotions. I was feeling defeated, deflated, and like a failure as a Mom. I had prayed for so long that I could "fix" her without medication. Her appointment Tuesday was confirmation that there was no longer anytime left for my attempts to "fix" her. This was our reality and something had to give. Our family life is suffering because we can't venture out like we used to. Brennen pays the price for that. Kross someday might too. The thought of how much things have changed as Kenidi's demeanor has changed is gut-wrenching. There have been talks of taking vacations without her, dinners out while she stays home with a sitter, etc. It all rips my heart out to the core. She's our daughter - part of our family. She should be experiencing these journeys, these memories with us.

In order to begin the new medication, she had to go for an EKG first. The doc wants to start her out on Tenex. (sp?) If there are any of you out there who have any experience with this drug and children, please email me. I'd love to hear your feedback. The EKG was done today and now we wait the results of it to make sure it was normal before she can begin the tenex. If the Tenex doesn't show positive signs of working in the next two weeks, they are going to move on to the big guns as they called it. Risperdal. Risperdal is used to treat strong and irrational behaviors. It's scary. Both medicines are. I have no idea what the future holds but I'm praying with every fiber of my being that these medicines do more help than harm. Only time will tell. My how things have changed.

So...in my usual attempt to always find laughter and positivity in my life...I saw a photo on pinterest today and decided to do our own version of it with Kenidi and Kross. I grabbed my camera and used it as a therapeutic tool. The end result is what you see below...

I'm giving all of the glory to God - as always - for this journey. I've prayed to him with my expectations of healing for Kenidi. I've pleaded with him to grant us peace within our family and mainly within her little body. I'm no longer in denial and realize that this is the only option left. We are left with no other choice but to help Kenidi thru medication. I'm hopeful that these meds will work. Please pray with me over the coming weeks as we embark on yet another foggy journey in the Seaman family. God is leading our hands and giving me - and us - the strength to keep putting one foot in front of the next. For those of you with special needs children, I know you understand this TOTALLY. I owe my family a HUGE thanks for helping me to combat the meltdowns Kenidi has displayed since arriving in Indiana. I couldn't have made it thru the past 2 weeks without them. Transition is horrific on Kenidi's little system. If you take her out of her routine, you can expect all hell to break loose literally. God love her...

Thanks for listening to me today. I know it's been a long time since I've "dumped" on all of my readers like this. Sometimes you just need to purge everything that is floating around in your head though and today was my day. As you all know, I purge via writing. I journal to heal. Always have - always will. Yes, my writings have put my family on major display at times in the past but I don't care. It's my life. It's my truth. It's me being real. Take it or leave it.

Thank you God for being my Rock. My savior. Literally. You've heard my prayers and you know my expectations. Please heal my baby girl.

In him, Angie

Labels: , , ,

40 Comments:

Anonymous Anonymous said...

Praying for you from SC.

7/29/2011 6:26 PM  
Blogger Maria said...

Praying for you:) ((((hugs))))

7/29/2011 6:32 PM  
Blogger Madison said...

Oh, girl. I had no idea. My heart aches for all of you. I will definitely be praying that the medicine works. It's incredibly frustrating to deal with medicine through trial and error. Hang in there.

7/29/2011 6:37 PM  
Blogger Kristin said...

Praying for you, Angie, and that the medicine will help.

7/29/2011 6:42 PM  
Anonymous Jen said...

Always in my prayers! Sending big hugs from the NC coast!

7/29/2011 6:50 PM  
Blogger K_L_C said...

So sorry to hear your family has been having such a tough time. Hope things are better soon. Praying for you.
Keely

7/29/2011 7:05 PM  
Anonymous Lisa Bettinger said...

Don't feel like a failure Angie, there is only so much we can do as Moms. And while none of us want to medicate our children sometimes that is the only thing left to do. One way to look at it is that it will make Kenidi's daily life better too. I can't imagine the frustration she must feel when her emotions and actions take control. I see it daily in Victoria's face as she is finally making gains in speech, but when I don't understand what she is trying to say I can see her frustration as she tries harder to make me understand. Hopefully the medicine will do wonders for Kenidi and your family can go on making those wonderful memories. Hugs!

Lisa

7/29/2011 7:08 PM  
Blogger inadvertent farmer said...

Prayers from me too...God bless you family and sweet little Kenidi. Kim

7/29/2011 7:28 PM  
Blogger Denise said...

Oh Angie don't be so hard on yourself, don't feel guilty for wanting to leave Kenidi home sometimes. You probably do 1,000 time more for that child than you give yourself credit for. You're strong and you gave it a shot without medication. I think God was telling you to take advantage of modern medicine. Kenidi is what she is, that isn't going to change, God can't change her and make her better but he can show you the tools that maybe can give her and your family some peace. I'll be thinking and praying for her and especially for you. Kenidi is well taken care of and plenty prayed for, it's you and your husband that need lots of prayers!!!! Bless your heart girl and hang in there. You are so full of what is good and noble. Remember that.
Love, Denise.

7/29/2011 7:28 PM  
Blogger Tracie said...

Praying for you all, Angie. I've followed your blog since our Babycenter June 2003 days and though I don't comment often, I feel like you're an old friend. I don't claim to know what it is like to parent a special needs child, but I am a mom and I can only imagine the emotional turmoil this causes you. Hang in there, girl, and continue to hang onto Him. He'll guide you all through this. God bless!

7/29/2011 7:29 PM  
Anonymous Robin said...

You know what Angie? I believe God gave us medicine for a reason. Yes, people abuse it and yes, there are some risks. But as a whole, can you imagine not having medicine? Antibiotics for strep, pain meds for broken bones, etc. You are to be commended, not judged, for taking this step. Of course it hurts. And it's scary. But you aren't alone. We will be here to pray with you :) Many hugs to you and sweet Kenidi.

7/29/2011 7:59 PM  
Anonymous Anonymous said...

Oh Angie, I will keep you in my prayers. Hugs.

deb williams

7/29/2011 9:49 PM  
Blogger STEFFIEJ said...

SO SORRY ALL THIS IS HAPPENING ANGIE..I KNOW AS A MOTHER HOW FRUSTRATING ALL THIS CAN BE..YOU JUST WANT TO BE ABLE TO FIX THINGS AND IT'S SOOOOO HARD TO DEAL WITH WHEN WE REALIZE AS PARENTS WE CAN'T MAKE THINGS GO AWAY LIKE WE WANT THEM TO...NUMBER ONE..YOU ARE AN AWESOME MAMA..I HAVE NEVER MET YOU AND CAN SEE IT IN YOUR PHOTOS AND WHEN I READ YOUR BLOG POSTS...YOU JUST HAVE TO LOOK AT IT AS YOU ARE DOING WHAT YOU HAVE TO DO TO HELP HER AND GIVE HER THE BEST LIFE POSSIBLE..EVEN IF IT TAKES A LIL' HELP FROM SOME MEDICATION..IT'S OKAY..IT DOESN'T MEAN YOU HAVE FAILED BECAUSE YOU HAVE HAD TO RESORT TO THE MEDICATION ROUTE..JUST MEANS YOU WANT TO HELP HER IN ANYWAY POSSIBLE..AND HELP THE REST OF YOU TOO..I'LL BE PRAYING FOR YOU ALL AS SHE GETS THIS IN HER SYSTEM..PRAYING THAT THIS ONE WORKS SO YOU DON'T HAVE TO TRY OTHER ONES..PRAYING FOR PEACE WITH YOUR DECISIONS YOU ARE HAVING TO MAKE..AND THANKFUL THAT YOU ARE SURROUNDED BY FRIENDS AND FAMILY THAT WILL WALK THIS JOURNEY WITH YOU..PRAYERS FROM NC...LOVE, STEPH

7/29/2011 10:14 PM  
Blogger smileyseats said...

I agree...do not feel bad for resorting to medication. I fought medication for my son for 3 years, while every one of his teachers were telling me something was wrong. He was having focus issues at school, but not behavior, that was just at home. I blamed our parenting and lack of structure and anything else I could think of! One of my friends shared a wonderful comparison...she said, if your son was diabetic you wouldn't hesitate to give him insulin so this is what he needs now. I also felt like God had been hitting me over the head with advice from his teachers since Kindergarten. I didn't try the medications until 4th grade. It wasn't easy...we tried several meds before getting the right one and then we even stopped completely because at times the cure was worse than the illness. He became very aggressive on the meds. But them without them he was aggressive also. So, we finally went back to the meds and miraculously this time the same med that had not worked before worked and it has been so much better. He still has some meltdowns but nothing like before. He is currently taking Concerta. I will definitely be praying for you Kenidi and your entire family. Love the pictures! Kross is so adorable! Sorry so long!

7/29/2011 10:18 PM  
Blogger Pamie G. said...

The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup Runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever. (Psalm 23)

(((((Angie)))))

7/29/2011 11:14 PM  
Anonymous Vicki said...

Angie
First off. Big hugs. I've been right where you are. We are on our last day of vacation with out David and it's been heaven. I'm typing from NY phone right now and we fly home tomorrow. I will respond to you privately about meds... Specifically resperidol... It's been a life saver for us. Hang in there and I will shoot u a message when we get Home.

7/29/2011 11:38 PM  
Anonymous Vicki said...

That should be my phone not NY phone. Love auto correct. We are in Seattle not NY. Lol!

7/29/2011 11:39 PM  
Anonymous Jennifer Gill said...

I don't know what your going through but my heart goes out to you. I hope everything comes together. I'll keep you in my prayers. Just stay strong!!!

7/29/2011 11:39 PM  
Anonymous Nicole Kemp said...

I cried feeling your pain. I will be praying for you! You are not defeated, you are just taking on a challenge in a new which makes you stronger. You are brave and beautiful inside and out. Xoxo

7/29/2011 11:40 PM  
Anonymous Kym Brnabic said...

Thoughts and prayers Angie!

7/29/2011 11:41 PM  
Anonymous Kim Green said...

Angie, I sure wish I could just tell you the answers you need to have but....you know I can't do that. So, in the meantime, I"ll keep you and your family in my prayers.

7/29/2011 11:41 PM  
Anonymous Veronica Flagle said...

Angie just read ur blog, I know how ur heart must hurt, my 3 year old just began taking Tenex a couple of months ago. We have saw great improvement, I would b happy to talk more with u about it.

7/29/2011 11:42 PM  
Anonymous Julie Leonard said...

My heart is crying for you, I will keep you and the family in my thoughts. Love.

7/29/2011 11:43 PM  
Anonymous Kara Simpson said...

I am giving your blog info to a friend of mine who's sister is going thru the same, they live in Miami. I hope they can give insight. So sorry you are faced with such decisions.

7/30/2011 12:39 AM  
Anonymous Anonymous said...

YOU are not a failure. I pray that the medication works, with little to no side effects. I pray that this medication allows her to have a peaceful and fun filled life she deserves. I pray this is the answer your family needs, and life can return to normal for you.

7/30/2011 2:56 PM  
Blogger Eloise said...

Oh, Angie, I feel your pain. I am so glad the doctors in Indy were able to see precisely the behavior you need help with. Do not fear the medicines or view them as a sign of defeat. My hope is that you see such improvement in Kenidi that you can't remember a time you didn't think medication was a good idea.

Vivian was on Risperdal a long time ago. As I recall, it was helpful until her seizures moved to her frontal lobe and the disturbance there was determined to be the cause of her erratic and aggressive behavior. Now Vivian takes medicine that addresses her seizures and their corresponding wacko behavior in addition to Strattera which seems to help her attention span at school and Lexapro which helps enormously with her OCD tendencies. She also takes birth control pills to help me manage her periods. These medicines are a godsend. If we didn't have them, either Vivian or I or both would surely be institutionalized by now.

It is heartbreaking to be unable to manage your own child. But you and I were not dealt the kind of children who respond to your garden-variety parenting skills (our middle children, anyway!). You are a WONDERFUL mother. You love your daughter and want the best for her. But you have a responsibility to your other children and to yourself and Brent as well.

I pray that you see positive results quickly! Feel free to call or email me if you need to talk more.

Hang in there! xoxo

7/30/2011 3:49 PM  
Blogger katy said...

So...I typed this whole, emotion filled comment...then decided it was too much. I just want you to know I'm saying a prayer for you sweet family. Praying God leads you in the right direction, medically and otherwise, with Kenidi. Praying that He refreshes you mentally, physically, and spiritually. We serve a more than capable God! Just keep swimming, just keep swimming, swimming, swimming...(sorry, that popped into my head LOL)

7/30/2011 5:07 PM  
Anonymous Shelley Kolthoff said...

Oh Ang, I am soooo sorry you are going through this, I pray that God will answer your prayers and give you the right answers, you are a wonderful mom and have done nothing wrong by trying to keep her off the meds, I would've done the same. I just feel so helpless for her and the rest of your family!!! I haven't been on FB for a long time...too much of the other drama that isn't worth reading, unlike something so emotional like this...sis I wish there was something I could do to help you, I promise I will be praying for good news and don't feel like you have been a bad mom, YOU ARE THE BEST MOM EVER AND BEST SISTER EVER!!!!! Please keep me updated, even if you just send me an inbox cause like I said, its been a long time since I have wanted to get on FB just to read mean hateful things that people say, ya know what I mean! I love you guys so much!!! Praying like crazy!!! God is good and he will find the right treatment!!! Xoxo

7/30/2011 8:28 PM  
Anonymous Anonymous said...

My heart hurts for you and your family! I hope with time you will all find peace and the calm normal that you all need and deserve again. You are doing what is best for your precious girl and for your family. Blessings & Prayers Michelle

7/30/2011 9:38 PM  
Anonymous Jennifer said...

Angie, I have followed your blog since we were with Babycenter 2003 with our daughters. My daughter, who is the same age as yours, also is my special, spirited one. Something wasn't quite right since she was an infant, I thought she would out grow a lot of her issues. It wasn't until she was 5, we had her evaluated by a Neurologist and found she has a form of autism, sensory processing disorder, mixed with psychiatric disorders. I completely understand when you talk about the impact it has on our lives. We have gome through the same thing! I feel so guilty saying she has caused such a stress on our family and our marriage, all of which is out of her control.

I wanted to strongly to believe that I could do something different as a parent to help her (though I knew I had tried almost everything and she needed something more). We changed our diet, she went though OT. But I knew this was beyond our expertise, and she needed further intervention. She was a danger to herself and others. I felt awful for her during these fits of rage that would last a LONG time. No child should feel this way. I have cried so much trying to deal with her, feeling so overwhelmed and helpless.

I was a hard decision to take her to the doctor to ask for help. But I knew this was our only hope. I cried when the doctor handed us the first prescription. I told my husband "I hope were doing the right thing". I was very nervous! I have to say that we are on the road to getting our lives back. I can see the light at the end of the tunnel. More importantly, my daughter is starting to get better, which has made her so happy!!! She hates the way she was and still is at times. We still have issues, we are about half way there I think. We are on the same journey as you :) Medication has been wonderful for her! What has helped me is if I think... if she had diabetes or something else, I would treat it. This is no different. Medication has helped her start to get her life back!

We might be adding in Risperdal or something in the same class to help her with her rage. I still don't like that you have to do a lot of trial and error with the meds. I'm hoping this next school year will be better than the last! I would love to stay in touch! Let me know how the Tenex works for her, or if you try the Risperdal.

You are doing the best you can for her. Please don't beat yourself up! There is a light waiting for you at the end of the tunnel. She is blessed to have you as her Mom and her advocate!

Sorry if I rambled!

Hugs and prayers from Jennifer in CA

7/31/2011 7:24 PM  
Blogger Maria said...

Angie~so sorry to hear what you all are going through. You know, before I read what you wrote I looked at the pictures of Kenidi & thought "what a beautiful little girl".
Medication is very scary. So scary, in fact, that I waited nearly four decades to relent & try the antidepressants that my doctors were desperately trying to get me to take. I was scared. Terrified, actually. I was a child when they first diagnosed my chemical imbalance. I am so sorry I didn't listen to them sooner. The medication changed my life. It gave me a life, actually. I hope & it does the same for Kenidi. My prayers are with you all.
Sincerely,
Maria

7/31/2011 9:52 PM  
Blogger Rachel said...

Oh Angie...will be praying hard for you!!! You are amazing and I am so glad that we met! I am here for you!!! HUGS!

8/01/2011 9:34 AM  
Blogger Angie said...

I'll be praying for your sweet family. I know it must be hard, but God will help you through it all.

We are going through a little hard time right now with a decision we have to make and God always helps us make the right ones..as He did you!

8/01/2011 9:24 PM  
Anonymous Anonymous said...

Sorry you have to deal with this. Resorting to medication is a difficult decision. However, it can help everyone and improve quality of life. Two of my daughters have had to take medication. One of them tried Tenex for a short time. She is about to turn 8 years old. I wasn't really ready for the meds, so when there were some difficult side effects, I immediately discontinued Tenex. She took it when she was 6 years old and it made her tired and she actually feel asleep in school. Adjusting the dose or time could have helped that. Good luck!

8/02/2011 11:45 PM  
Anonymous Jamie N. said...

Just read the latest blog post. ; ( My heart aches for you and your family and I want you to know that you are NOT a failure as a mom Angie, you're actaully everything I think a mother should be and hope to be! I am with you on the medication, It is scary! But there is always a time when its truely needed...esp if someone could get hurt it might be best. Keep the faith and stay strong as a family unit, I will continue to pray for your family. <3

8/04/2011 11:33 AM  
Anonymous Angie Steele said...

praying for you ALL Ang! I can't imagine what you are feeling, but know you are not alone and God does have a plan....even though you don't see it now....he has big things planned for Kenidi and your family! Keep hanging on to your faith...he see's the big picture, even if you don't right now. I'm going to pray right now for Miss. Kenidi!

8/04/2011 11:33 AM  
Anonymous Anonymous said...

Praying for you, Angie. I have a special needs child,I feel your pain and see myself in your blog post. I listen to this song often on my ipod and it boosts my spirits and gives me hope. Maybe it can do the same for you. I bought it on itunes. http://www.youtube.com/watch?v=UIb5EJK0x-s

8/04/2011 1:30 PM  
Anonymous Anonymous said...

I'm so sorry that it has become so difficult for you all & little miss Kenidi, I wish I could just take her to a play room & let her run & play & scream if she wants & never have to worry about a thing ever, it breaks my heart! She is so sweet and tender & loving in her little heart, God is still in charge here & he does have a special plan for all involved, I know something good will come of all this, have faith my little Angel! Xoxo Mommy/ Grandama Sue

8/04/2011 5:29 PM  
Anonymous Anonymous said...

My child is not special needs, but when he was diagnosed with severe asthma, I didn't hesitate to medicate him. I didn't stop to think, "Will this cause a growth issue? Will he be able to have children one day?" I didn't even think.

It was a physical issue, and it needed to be tended to because his life depended on it.

I think sometimes, with mental health issues, we forget there is a physical cause. The drugs will work if they're the right ones, and if they don't work, there may be another answer.

Rx isn't a dirty word if it helps. Your goal is not to render her stupified, your goal is to improve her life--and if that improves the life of your family, you are doing a very smart thing.

It's good to be real, look at the support you garner. Prayers being offered here too.

8/07/2011 7:18 PM  
Anonymous Anonymous said...

http://planetjosh.squarespace.com/ he has used rispridal - he is autistic, not saying kenidi is, just saying

8/08/2011 6:59 PM  

Post a Comment

Subscribe to Post Comments [Atom]

Links to this post:

Create a Link

<< Home

AGD Blog Archives

Link to Us!

 

Copy code and paste in your blog where you would like button to be displayed.


Copyright © 2006-2008 Angelica Grace Designs | All Rights Reserved | Blog Design: Simply Creative | Graphics: PRESH Web Designs