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!

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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!

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

Welcome to Special Needs Siblings!

We are Special Needs Siblings and we are so glad you came by to visit us! Special Needs Siblings is a grassroots community that began in April 2015. I am a mother of five, one of whom has autism and epilepsy. In simplicity that is where it all began, with them. I will be taking time to talk about each of my children and the different reasons why I began this organization with greater detail in upcoming posts. FIRST, I want to humbly thank you and welcome you to our page! Whether you just stumbled upon us or purposefully searched and found… we are glad you made it!

Special Needs Siblings, SNS, are an elite group of individuals. They were chosen by fate to enter into families that are challenging and equally as rewarding. Our siblings are privy to from youth to elder to accompany their Special Needs Sibs on journeys throughout life. We want to honor, cherish, and encourage our siblings that are in the group! You are seen. You are heard. You are not alone. We appreciate your patience, your persistence, your passion but equally acknowledge you frustrations, your feelings and your concerns. This is a place for you to be YOU! It is okay to not be okay! We know the love you have for your siblings far outweighs those mad moments!

AND…

As hard as we try as parents we simply do not always get it right! This place is for parents to praise their siblings as well! Let us know how they are doing, anything they have participated in! We look forward to sharing your stories, sharing our insights, and just building long last friendships with siblings around the world!

 

xoxo,

SNS

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