Sometimes it’s hard

[justine_lynae]

I’m just pure exhausted. My daughter has autism & ADHD. She barely communicates verbally (PECS board, typing on her iPad & sign language) She has been on every medication (finally have 2 that work for her) and she’s in every therapy. She’s developmentally delayed. She switched schools due to being bullied and neglected at her past school. She’s not potty trained & is skin and bones after completing various rounds of chemotherapy and radiation. She’s had quite a few surgeries in the last year alone. But that’s not the worst thing.

What kills me is how she’s treated by people around her. It seems as if no one has the patience to just listen to the poor kid. She tries to play and join in with other children, and is pushed away. She has a hard time connecting with other children so she gravitates towards adults. Her auntie (whom she trusted & loves more than anything) committed suicide & my daughter is afraid of people leaving...because they may never come back. Her daddy just passed away a couple months ago in a car accident. She was just diagnosed with childhood arthritis. Her kidneys are deformed and she is in the hospital more times than not. She has a feeding tube.

She spends her day lining up her stuffed animals in bed & sending me and daddy various sweet emails from her iPad. She wonders why daddy doesn’t ever respond. She spends her time colouring the cutest pictures for people who will never get to see them. Her favourite thing is bedtime stories & receiving a sticker after she goes potty. And Peppa Pig, of course.

When your baby girl is in tears because she’s “lonely” and everybody leaves her, it’s not easy. 11 isn’t easy. Being a 3 year old in an 11 year olds body isn’t easy. Autism isn’t easy. ADHD isn’t easy. Childhood cancer isn’t easy. Death isn’t easy. Rejection and bullying isn’t easy.

Hug your babies extra tight today, because my little girl is feeling extra lonely these days. 😔💔

[grannycares]

I feel extra sad for you and your little girl. You’re going through a lot. Just when I think our life is extra hard. I see someone going through more. I use to literally make friends for my grandson play dates, sports teams, neighbors. Some he kept some he ran away with his difficult temperament. Maybe there’s some groups from the hospital or doctors going through similar. My grandson finally told me why he doesn’t like going around his family. Besides the fact many people don’t like him because he’s brutally honest at times. He said they drink too much and their behavior is out of control. I respect that executive decision. So best wishes hang in there.

[justine_lynae in reply to grannycares]

Thank you ❤️ Forever trying to set up play dates over here too!

[Judyfruity]

Hi justine_lynae,

My heart broke reading your story. I know that for me it's the worst part, seeing my son going through rejection and being lonely. You must indeed be so exhausted being the only ressource for your daughter! Even if life seems to have been unfair to her, it's obvious that she has such a great Mom, you must be like an angel to her. I wish I had a solution for you...the only thing that comes to my mind is the Big Brothers and Sisters. I know that they can do matches with kids on the spectrum as well. I don't have experience with them, but I was thinking about them for my son. My thoughts are with you, sending you the best.

[justine_lynae in reply to Judyfruity]

I agree, rejection and seeing their little faces is the worst part. Thank you!

[MaudQ]

Sending love - you sound like a wonderful mother and a really good person. I don’t have any answers but this group is always here and I have found that people are very supportive and understanding here. One of the other commenters suggested seeing if your hospital does play dates or support groups? I know that one of our major hospitals here has a support network for parents with developmental issues that sounds pretty good. Also, I have a friend whose three year old has cancer and Candle Lighters NYC and Fighting All Monsters (FAM) provide support for families with kids with cancer. Your daughter sounds very sweet - hoping things brighten for you soon.

[justine_lynae in reply to MaudQ]

We’re at the children’s hospital most of the time so I’ll definitely check out the idea of having a play date! Her favourite thing right now is watching the “fishies swimming in the pool” in the lobby 😍

[Nats2005]

Wow, that is a lot for someone to go through, whether as a kid or not! Don't know that I have much advice to give, other than perhaps to say life can - and does - get better. I was painfully shy and bullied through elementary school, definitely Asperger's/high-functioning ASD, not to mention a child of divorce, and quite possibly mild-to-moderate inattentive-type ADHD (though never diagnosed as a child or adult). Life got a little better after my parents sent me to a private school for jr. high/high school. Once in college I joined a bunch of clubs and made a few more friends. Now I have a wife, a son and a network of friends.

A lot of my friends are similar, had a tough time with bullies and other issues in elementary, middle and even high school, but found their way in college and in their adult life.

[Onthemove1971]

justine_lynae-

I wanted to share this story with you. I have read this many, many time throughout my journey and hope you enjoy it!

Happy holidays

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[Janice_H]

Hi, I'm so sorry about the way you are feeling. Children can be so mean, especially when they see differences in another kid. You will want to do your research and find support groups of parents who have children with special needs. Many of these groups have social activities with and without their children. You can form bonds with the other parents and learn coping techniques from them.

Your child will draw strength from you. You must have a mountain of strength because you are able to parent her despite everything.

Just continue to love and support her as you already are. Try to find her a better school setting where her needs are met and there are children with similar diagnosis. And remember to nurture yourself each day, even if just for 15 minutes. I feel your pain. Hugs from miles away!