Crossroads

Dear Christian,

I fumble over my words thinking of you. I woke up yesterday to you sick with some diarrhea. I was a little frustrated because it was 5am and that meant I had to sit with you, and watch just so I could circumvent you making a huge mess. I sat on the toilet and just stared into your eyes as your head rocked back and forth. You brought your hand out and said mommy. Christian, you repeated it about 30 times before it was time to get off the commode. I helped you clean up, wash hands, and back to bed we went. I sat quietly on your bed and rubbed your head just wondering what thoughts go through there. How could it possibly feel to seize every day… all day… mercilessly.

I mean if I get bothered … how must you feel at 13 having your mom wipe up after you. How independent you have shown you wanted to be… by all the no’s you express. How you circle back to me quietly when you are scared or hurting. How could I be so selfish at times to not constantly consider your plight. I see you struggling to maintain eye contact. I have caught you mid fall during an episode. I watch you foam and moan out of you mouth… how can I forget the toll that ONE seizure has on you. How can I pretend the seizures do not affect every single subsequent action you have during the day… Then to remember you my love seize more than 20 times a day… over a span of 10 years…

I am sorry my love.

Sigh.

But today is a new day, I am sitting on my couch sort of numb. We went to the neurologist yesterday and they told us he MIGHT be a good candidate for epilepsy surgery. I know it is something I considered in the past, but the reality it might come true scared me. I have been planning for changing his diet to the ketogenic diet. I was not prepared for the news he may need to undergo brain surgery.

Yesterday’s Recap

Well, the neurologist called with an update today after speaking with the team… and they want to proceed with the surgical route. We want to see if this may be a good option for him.

I am scared.

I am so very scared.

I am selfish.

I do not want anything bad to happen to my baby.

I know this could help him greatly. I know we have a long time between a consultation, a PET scan, more EEG monitoring… just more. I just had to get it out… that this entire process scares me. I do not know much about this and I will be diving head first into all the information I can find.

Say a prayer for my baby if you find the time.

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Mom – Only So Much You Can Do

My, oh, my has it been a while since I have sat and shared my thoughts with you all. Please, forgive me because I will be sharing quite a few entries over the next few days. These are all vulnerable moments that I have jotted in my journal, but now have the courage to share with you.

MAY 2018:

Boy has this month been a rollercoaster of emotion for me. It started with Christian recovering from a tonsillectomy and adenoidectomy. This was supposed to be a simple outpatient procedure, but it was anything but. I had to take off a week of work just in case of complications… ‘in case’…. that was just the case. Christian had a successful surgery. It was the recovery that caused the concerns and scares. Now, Christian has seizures on a daily basis. He suffers from a both generalized and focal seizures:  atonic, absence, myoclonic, focal and tonic-clonic. These all went into overdrive after his surgery. He was admitted into the hospital and there we were. Grateful, I packed a ‘just in case’ bag for an overnight stay.

I was alone with him the majority of the time. Both sets of grandparents, and his auntie came to visit for which I was grateful. Outside I was trying to remain strong but inside I was breaking. I barely slept because even as he slept I stayed awake watching him. I tried to make sure he was not seizing ‘too’ much. I tried to prevent him from pulling out his IV, although I failed numerous times as he kept yanking it out seemingly as soon as I dozed off… I would hear emergency beeping followed by a couple of nurses racing into the room. I would wake up and everyone was frantically trying to help him. There he was . He was sitting on the bed, in a daze, and covered in blood. I was thinking… ‘shoot, I failed again.’  Repeat. Repeat. Repeat. Multiple days. Multiple doctors. Multiple reinserts. Multiple medication adjustments. Multiple opinions. Pure exhaustion.

After three days and variety of medication changes we were permitted to return home  with orders to remain home and recovering for 10 additional days. I was relieved to be going home. I had not seen my other children in four days and I missed them. I do believe Christian was relieved as well. there is a certain comfort about being home… in your own space… to recover. He had his tablet and I had my orders. Give him medication. Make sure he rests aduquestly. Document seizure activity. See his neurologist within a week.

Needless, to say I got it done. Although, he had trouble eating, sleeping and seizures were all out of whack. We survived… Or so I thought. Seeing him in this state did a number to my heart. Balancing motherhood with his siblings really put a strain on every ‘end of year’ activity I was accustomed to being apart of. This was the first year I missed my Caleb and Jada’s  field day and end of year party. Now, this may seem small to some, but this was a huge blow for me. Attempting to explain to the siblings that mommy could not come because Christian was not feeling well enough to attend with me brought this look of sadness over them. Yet, they told me… it’s okay mom I know Christian needs you.

Why did those words sting like a dull dagger to my chest? Why did I feel like I failed them in those moments? Why couldn’t I just drag Christian out of bed after a seizure and bring him with me? Why couldn’t I just purchase a wheelchair, or stroller for him that way I could simply roll him out with me? So many questions… so little answers. I just made sure I got them a special lunch to take to school… I bought them a hat and a bag. I made certain to skip riding the bus and dropped them off at school instead. I took pictures of them before heading into school that morning, and I said a quick prayer that I hoped they understood.

I tried my best to be all things to all my children, and sometimes that is all we can do. Nothing went according to plan those 2 weeks. Not one thing, but we managed. As mothers I believe that is all we can really do. Manage and accept the things we have no control over.

Until next time.

LaGloria

 

Christian & Mommy – Letter A

In these 6 minutes you will witness a raw and unedited account of Christian before and after a seizure. He and I embarked on a new journey. I set out to capture a few minutes at the end in order for me to set baseline.

Recently, he has been showing interest in writing so I wanted to teach him. We are starting with the letter “A”. Never thought I would capture a seizure in the same sitting.

History: Chris is almost 13. He has autism and epilepsy. He is on daily medication but still experiences seizures on a daily basis. This breaks my heart, but it is simply the reality of our last 10 years. I had no idea he would seize while filming this… but I am grateful we were able to capture the moment. Being able to capture this daily occurrence will help his doctors in assisting him. This also brings transparency to our household… to loved ones.. strangers on our journey. Not everyone knows that there are multiple types of seizures.

Not everyone understands the toll it takes on the brain for those who experience a seizure. Not everyone gets why he drops in the middle of the store only to get back up and walk. Not everyone will even care. But to those who do… to those who would like to share the ups and downs with us…

We look forward to hearing from you.

Until next time,

LaGloria

Bubble Burst

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Boy or girl… What do you want? What are you having? Are you going to find out? Aren’t you excited! How far along? Do you eat seafood?  … These are classic things we frequently hear as parents expecting a new bundle of joy. Omgoodness, pregnancy is such a delightful time filled with hopes, dreams, and morning sickness, lol!  Here you are carefully carrying your child to term… cautiously watching what you’re eating… reading every book… photographing the growing belly bump! This perfect tiny life is yours. This little one will grow up one day and you are responsible. They are your precious gift and you will protect them no matter what.1910221_521136381577_24_n

The day comes and a miracle arrives, but then something shifts. Perhaps you sense something immediately, perhaps it is not until the child has hit 2 years old you feel some differences, possibly it’s the age of 5 and there is a traumatic event that alters every hope and dream you held so dear.  What happens when it’s discovered your beautiful and perfect blessing will have a disability in some capacity? A disability is a physical or mental condition that limits a person’s movements, senses, or activities.  This is a limitation. There is suddenly an invisible line drawn that you cannot remove. You did everything right and something still went wrong. What happens then?1927689_521136680977_1017_n

For myself, I can strongly say I went through a wide range of emotions. I felt so guilty when I found out that the playful, hulk-like, arm motions Christian was making when he was 2 years old were actually seizures. I was guilt ridden and depressed he had been seizing for months and I was laughing because I thought he was mimicking the Hulk movie we had seen. I was his mother. I was his protector. I was sitting here watching him and not seeing a thing. I did not understand how God could let this happen. Now, it wasn’t until about six months later I found out that the reason he stopped singing the alphabet to me or pointing to his extremities was because he always had autism. Now, the guilt swept over me again. He was my first born.

‘They’ said be patient with him.

‘They’ said he will learn at his own pace.

‘They’ said not to rush him just to love him.

What ‘they’ didn’t say was what to do when that isn’t enough.

My sweet boy was diagnosed with two lifelong disabilities that he didn’t choose and that I could not control. Oh how I would switch spots in a heartbeat to see him not struggle. The grief I felt as I went to appointment after appointment informing me of the limitations my son would face throughout his life. Grief when I realized that he may never heal fully or go a day without medication. We would live in a revolving door of doctors’ appointments, therapy visits, medication checks… the list goes on. The pains I felt when my son began to smack his lips, eyes roll back and arms start to spasm. This is from a mother’s perspective.

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Now, this is just a glimpse of how I see my son.  But about four years ago I had to step back and consider how do my other children feel?  I am blessed with four more beautiful children. They were born healthy and remain disability free and for that I am grateful. Physically they do not have any ailments requiring reoccurring weekly appointments or daily medications.  Then I looked through an old photo album and started looking into the eyes of each child. My heart began to ache deeply. For the first time I really saw pain behind the pictures. This was not the pain of Christian. This pain was his siblings. I saw photo’s and recalled Caleb or Jada was trying to get Christian to smile. I saw photo’s memories flooded of times they would try to include him and he declined the invite. I began to think how absent I have been during these last years. Physically I am here daily. The dishes are washed. They have never missed a meal. They attend school and receive good grades. They are fine.

Correction, I thought they were fine.

 

When I sit back and think about the past, present, and future my thoughts engulf me. I recognize I have spent so much time focusing on Christian’s disability that I have sometimes overlooked the needs of his siblings.  This situation is unintentional of course; it’s just a byproduct for a mother of a special needs child. The natural assumption is that because the siblings don’t have a disability they are functioning normally so they are well. False. The sibling bond is too vital of a relationship to overlook in any family.  This relationship becomes crucial within special needs families because the brothers and sisters will be in the lives longer than anyone else. My children are the most dynamic people in Christian’s life. Long after I have passed his siblings will remain.

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However, admitting we have a problem is the first step! The guilt I felt knowing Jada felt left out because she never gets checked out of school. The regret I experienced when I missed key moments at Caleb’s game because I was watching Christian in a meltdown. Countless times I have asked them to leave their homework on the kitchen table for me to check… all for me to forget to look over it because I am consumed with something else. I slipped. I fell. I get back up. I acknowledge to the children that I see them and I apologize for the times I did not. Parents are people. I am not here to mimic perfection for my children. I would much rather them see me humble, strong, and determined to do better. Now, not every parent sees it this way, but for myself I prefer to keep it real.

I will go into further details about ways I have learned to grow with my lovely children. I will share my steps and I would love to hear from you! Can you relate to anything I have shared today? Do you know someone who can? How do you feel about special needs siblings?!

Until next time… all our love.

SNS!

The Sibling Seesaw

Long time… No write… Count it to my head not my heart.

Lately, as a mother I have been on this rollercoaster of emotion especially with my boys, Caleb and Christian. I have spoken previously about inclusion and understanding regarding Caleb and his older autistic brother Christian. Now, I have been put in a bit of a pickle and I am praying I make the right decision.

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My sons are pretty close in age, 11 and 9, so their entire circle of close friends is the same.  I wouldn’t consider myself a helicopter mom, but they have never spent the night at anyone’s house other than family. So that pretty much brings us to date. One of their friends is having a sleepover and invited them to attend. Now, I agreed without hesitation because I know the parents, the children, and am comfortable with the environment.  This was a few weeks ago. Now I am hesitant. The birthday sleepover is this Saturday and I find myself extremely anxious. I do not want to separate my boys because they were both invited.

Firstly, I do not want Christian to attend and something negative happens while in someone else’s care. Sounding very ‘helicopter’ like, but I really do not feel at ease entrusting someone with him that isn’t trained or equipped to deal with his differences. Then I go back on my seesaw and think of Christian. I remember walking in to pick him up a couple weeks ago at daycare and he was balled up in a corner while younger kids were throwing blocks at him. He is 11 years old, but he was curled up crying. He was saying repeatedly, ‘Stop it. Stop it. No one likes me. No friend.” I had to remove him immediately. He has finally begun to associate himself with feelings of acceptance and friendship. He will ask for some of the boys attending the sleepover by name. This has been a transitional year for him going to middle school.  Christian has been making such great progress towards his communication. He is trying to hold conversations with kids his age rather than just standing parallel with them. If I do not allow him to attend am I also holding him back or simply protecting him.

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Secondly, there is his wonderful brother Caleb. Caleb is super excited about attending his first sleepover! No girls allowed, unlimited video games, pizza galore he is pumped up! I am thrilled he can spend time with his friends. He has spent the first half of the school year successfully bringing up his grades and receiving positive conduct reports. He has stood up for his brother numerous times… even though they still treat my house like a WWE match. I am so proud of his progress! He deserves some unfiltered fun.

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I’m torn because I would like Caleb to enjoy a sleepover without the undue pressure of watching Christian; on the other hand, I don’t want to deprive Christian of social development. Is it insensitive putting Christian’s special restrictions and concerns on another family during a time of fun?

I know this is just the beginning.  As they get older Caleb will want to do things on his own. Christian will need friends with more similarities. Is that even the right way to say it? I have never been good at being politically correct. I am blunt and bubbly. Yet, I really do not know in the moment. I do not know what choice I will make, but I pray for the peace to make it. I pray they both know how much I love them. How I would do anything to protect and nurture them, physically and emotionally.

All this just to say it is another day in the life of Special Needs Siblings. Do you have a similar experience? How did you cope? I would to hear about it!

Caleb the Great

Previously, I mentioned my big boys, Caleb and Christian. Caleb is my second oldest child and has been accompanying Christian the longest on his journey. It is for that reason,         I honor him first.

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Oh Caleb, my dearest Caleb where do I begin? My pregnancy with you was hard for multiple reasons. It was while pregnant with you I learned your brother was having seizures.  We had no idea. Christian had been making these weird motions with his arms, but we assumed he was playing. I was pregnant with you. My dad, your grandfather passed away. It was at this time,  Christian digressed from pointing out his head, shoulders, knees and toes to not saying a word at all. I was pregnant with you, when fear grew within my heart about the future of my boys.

We named you Caleb John because Caleb means ‘Faithful, whole-hearted’ and John, after your late grandfather means ‘God is gracious.’ We knew that regardless of what was going on with your brother, and in my life at the time you were chosen and special. When you arrived a week after your due date, I knew you were going to make your own mark on the world. I was filled with so many emotions! You were bigger and longer than your brother, with popping brown eyes and a head full of curly hair. We were overjoyed.

Now, fast forward a couple years and you have surpassed your brother in the way of speech. Even though you were two years apart, I was potty training you both simultaneously. And oh, boy do I remember those days so vividly. You were wearing pull ups and because Christian was so much bigger he had to wear Goodnights bedtime all throughout the day. You were catching on so quickly. We had the small portable toilet with Sesame Street on it, and you would run with excitement to sit on it! Christian was extremely reluctant. I spent so much time with Christian, cleaning up his accidents during the day and evening. I was just so relieved you caught on so quickly. I kept anxiously looking for signs you would digress, but you did not. You retained everything that came your way.

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Caleb, I can recall specifically once when you were 4 and Christian was 6. We were at the one of Christians’ Special Olympics events with his school; you turned to me and said, ‘Mommy, I want to do that one day.’ I looked at those bright brown eyes staring at me so proud of your brother! You were so happy to be with him and see him get ribbons for placing in the track and field event. I thought to myself, I pray this never ends. I pray you always see Christian as your brother, an individual, without shame or concern for the world and their judgement.

You would follow Christian around even after he pushed you to the side. I had not told you he was autistic or epileptic. You saw him taking medications, you witnessed numerous doctors’ appointments and testing, and you sat patiently in waiting rooms while he underwent therapy all very young and with a smile. Hindsight, I did not see the frustration and jealousy building in you. I was so consumed with making sure Christian survived another night I completely missed the signs of discord in my two precious baby boys. I knew you were on track and I just assumed you knew mommy loved you too.

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Speed up, another two years, and you are all in primary school. Christian is taking a different bus than you, Christian is sent to an alternative school because they do not offer his class at yours, and Christian is being taken to therapy three afternoons a week that we all have to attend together. We play outside, and discuss your day while he is in his session, but one fall day it is different.

One fall day, I see you quieter than usual. I approach and ask you what is wrong. My strong, loving, silly boy seems so distant to me. I just wanted to know what is troubling you, so I ask again. I ask you to look into my eyes, and I say “Caleb, Mommy loves you. Please, talk to mommy.” You look at me and your eyes begin to swell. Then I repeat, “Caleb, Mommy loves you. Please talk to me. What is wrong?” Tears burst from your sweet and innocent face and you say, “Mommy, you love me?”  Now, I am crying and a million thoughts flow through my head. How can you ask me that? Why would he feel this way? Where did I go wrong? I hold you tightly and gently turn your  head to face me and say, “Caleb, baby, of course I love you. Of course, Mommy loves you.”

He goes on to explain how he wishes he were sick, and he got to do special things, and I just felt so lost. I felt like all this time he has been excelling, he has been so talkative and happy, I missed it. I failed him. It is then I had to set aside time to explain the differences between him and his brother. It was then at the tender age of six, I thought I was doing all I could to protect Christian I let Caleb slip through the crack. Afterwards, we talked and talked some more. I let him know he does not have to apologize for his feelings, but he can always come to me or his father and let us know. We will do our best to answer any questions and clear up any uncertainty.

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Caleb is an extraordinary child with a special brother. Caleb is a special brother to his special brother! They are now eleven and nine, respectively, and although they fight, argue, and nitpick. Caleb no longer wants to be his brother; he wants to be there for his brother.

He has moments he does not understand why Christian has to do things a certain way, for example, there is only one seat at the dinner table he sits at. He will not eat from another seat, so one evening Caleb made it the topic of conversation. Caleb asked, “Mommy, why does Christian get an assigned seat at the table? Why can’t anyone else sit there or he gets mad?” My response was, “Caleb would you like to pick your own special seat at the table?” “Yes! Yes! Mommy, I want my own,” he replied.  I was happy to do it. It was simple and I took the time to listen to his requests.

Now, a few weeks pass by and his sister Jada, who is seven, is choosing a different seat every night. She just refrains from sitting in the two ‘assigned’ seats. She is very funny and witty as well. She said to Caleb one night, “I do not want only one seat. I like being able to switch. If Christian wants that one that is okay with me because that means I have to sit in the same seat every day. Boorrrrring.”  I chuckled inside. Later that week Caleb came to me and asked if he could just sit wherever he wanted again. He liked having more options. I laughed and gladly granted his request.

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I will discuss Jada on another date because she is a character all her own. I just wanted to share with you all some personal struggles I have dealt with and continue to deal with concerning raising siblings, more specifically special needs siblings. I went through my periods alone and doubting my mothering capabilities. It was not until I began Special Needs Siblings that my eyes were opened to other families in similar situations.

Caleb is super protective of his big brother now. He is still his biggest fan and biggest annoyance. They are brothers. They are not perfect, but progressing just like their mother. We stumble and it gets messy, but we are all here enjoying this ride. There are so many stories over these years, and there will be many more to add on!  I hope you will take this all with a grain of salt and lots of love. If you choose please write to us and allow us to share your Special Needs Sibling story. We would love to interview you from a parent perspective or siblings point of view!

We are small community with a large heart and overflowing with love.

XO~

SNS

Why Special Needs Siblings?

I have been asked what prompted me to begin Special Needs Siblings right now. Honestly, my response is my children. I truly wish I had begun it earlier, but better late than never! I am the mother of five amazing children, the eldest who has autism and epilepsy. The roller coaster ride I am on is one thing…but being the mother and witnessing the journey of these five is priceless.

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Jada (8), Rose (1), Caleb (9), Raymond (1), Christian (11) – [left to right]

When Christian was 2 he was diagnosed with epilepsy and autism. He has had multiple seizures on a daily basis since then. He is on a variety of medication, sees numerous doctors, and several therapist. He has been progressing in the way of communicating, but we still have a ways to go. Now, when it comes to my other children I always feel spread thin because of all that goes into Christian. This is not the life you see on television or read about in a magazine. As the mother, I am responsible for the wellbeing of my clan, but indirectly all the other children are affected. I can recall when Caleb was 6 he laid his weeping head on my lap shared how he wished he was sick. He went on to explain that he wanted to be checked out of school, he wanted to go to appointments, he wanted to not have homework… his requests continued. My heart sunk. I went from being appalled he would want to be sick, take daily medication, have difficulty using facilities or being able to communicate. Yet, on the other side of my seesaw I felt a heart pounding ache. I had no idea he felt so left out when it came to his brother. I tried to keep him involved at school, in extracurricular activities, visiting for lunches, but still he could sense the separation. At the age of 6, he could sense the differences evolving. One thing I never wanted was them to feel at odds with each other.

Now, I was already involved in my local community groups for Christian: Autism, Epilepsy, Special Needs, but nothing was catered specifically for the siblings. There was no assistance for the special siblings who accompany their differently-abled sibling throughout life. These are my reasons why. They are my late night researching; they are my early morning phone calls, my hundred emails… Special Needs Siblings are so vital to a healthy family. Sibling rivalry is common. Sibling discord happens. In families with special needs it can be easy to not see the unhappiness, the frustration, the anxiety our special siblings feel towards their life or their sibling. Communication is everything and being able to express their feelings without judgement. Feelings are never wrong. Actions can be wrong. I wanted to make an atmosphere full of acceptance, understanding, and pride. This is a place our parents can show off their special siblings in a positive light. This is a place siblings can talk to other siblings about their personal highs and lows. I have had the pleasure of meeting adult siblings and they are filled with the most patience, passion and love. I personally like to think that is in direct correlation with being a Special Needs Sibling.

Special Needs Siblings are proud of their siblings. They are proud of themselves, their families, and to share their hearts.

How do you feel being apart of a special needs family? ups or downs?

xoxo ~

SNS