My mother-in-law moved in about a month ago. In doing so we had to realign the bedrooms in the house. She moved into Bridget’s room (first floor) and we moved Bridget to a smaller room upstairs. Bridget only needs a bed and a dresser. In truth her bedroom was the guest room with a toddler bed in it. Continue reading
Category Archives: ABA
For the uninitiated, this is what it looks like
I’m going to feel all lapsed-Catholic guilt for admitting this, but I sometimes despise this life. I hate that I don’t understand my own child. I despair that by my own actions I am the trigger to her crisis. I freaking loathe that this behavior doesn’t happen at school but only at home (see trigger comment). I despise that I cannot calm her, I cannot reason with her, I cannot even give in to her because if I do this will not be a daily occurrence but an hourly one.
For the uninitiated, this is what a meltdown looks like. Continue reading
The Last Workshop
Part of Bridget’s program at school involves monthly workshops. An afternoon every month where all of her educational support personnel, the head of her SPED program, her preschool teacher, speech therapist and occupational therapist meet and go over every one of Bridget’s programs. Parents are encouraged to attend so we can follow through with the therapies at home. It also is a time for them to learn what behavior we are seeing at home and vice versa. Continue reading
Autism cannot be cured
I believe in autism. I believe that so many families battle autism like warriors. I believe autism can be masked and I believe that autism can be hidden.
I do not think autism can be cured and question that it should be. Continue reading
31 for 21
I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do. I have participated for the past three years and will do so again this year.
And this year I am starting on time, so bonus points!
October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome?
Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back.
Here is what Down Syndrome is not:
- Down Syndrome is not contagious
- Although all children with Down Syndrome experience some cognitive delay, having Down Syndrome does not mean the child cannot learn
- Down Syndrome is not a rare disorder. In fact 1 in about every 700 children are born with Down Syndrome
- People with Down Syndrome are not always happy. Just like all children they have their moments
- People with Down Syndrome have jobs and participate in the Community
- People with Down Syndrome have the capacity to love, to learn and to affect change
- People with Down Syndrome life expectancy has grown to be that of most peers.
- People with Down Syndrome have friends, know love and just like their peers have tempers
- According to NDSS, there are more than 400,000 persons with Down Syndrome living in the US. Chances are if you do not know someone today you will tomorrow.
- Down Syndrome does not discriminate on race, age or income level
The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating.
I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.
Just what we all want for our children. To be seen just like everyone else.
My Challenge: Mardra
I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge.
My Challenge: I am afraid of monsters.
When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com
Sometimes
Some times….I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.
But I accept that.
I will not effing accept is that I HATE in capital and bold letters that doctors will never show concern for Bridget. That she has to have some mysterious swelling that one doctor tells me to call another doctor about who tells me to call yet another specialist about. That when I finally get her into the vascular clinic she is seen by one doctor and fourteen medical students/fellows and I am told that her vasomotor instability is not that big of a deal. “A LOT” of kids have something “like” this phenomenon and not to worry. When asked if I should be worried that it could be happening while she sleeps and is it fatal, I was told no. I told them they would be the first person I called should they be wrong.
No parent (and I am not looking for a poor Kerri thing here) should be told that. That without any testing, with a brief exam that their child is fine. Parents should not be made to feel like we are bothering doctors.
We are the reason they can afford their student loans, vacation homes and alimony bills.
Bridget has SIXTEEN different specialists. Why the freaking hell do I have to call them? They are all at the same flipping hospital. Can they not call one another and chat, is that too much to ask?
And why, dear God why, do they refer to one another and then disagree? Why must I always be the advocate, the voice of reason and the fingers of Google. Why do I have to always be vigilant? The one who e-mails and calls cardiology, genetics, rhuematology, neurology, GI, neuro-urology (yes, there is such a thing), pulmonology? Why do they think that because it is NOT life threatening it doesn’t impact her life?
Not that she “suffers”. There are children with disease, cancer and deformities that have a life so much more difficult. I completely get how lucky we are and how selfish I am for getting pissy that she has to endure things that really are not that bad in the scheme of things. Recently she got another quirk, not an ailment or symptom really. But just one more thing to add to her Booness. I said she already had 15 why add one more.
This was not the life I expected.
To constantly be second-guessing myself. And the Harvard Graduates.
To wonder if I push too hard or not enough.
To cry because children are supposed to be beings of joy before they are teenagers.
To be at my wits end because although I love Bridget for who she is I hate the fact that I don’t know why she is the way she is. That we need to know the why so we can give her the best life she deserves to live. Just like her sister.
To have to physically hold my child down for two hours while she screams during a test of her bladder function.
Because as much as I love my child sometimes I resent that she isn’t perfect. That she isn’t easy. That she, with all her advances, cannot keep up with where life has placed us.
Because I am not capable of being the perfect mom that can handle everything.
Because sometimes I cannot even handle my beautiful, awesome, perfect daughter.
And I am sorry. Because sometimes I effing resent it. I fucking hate that this is our life. A life where we know our beautiful daughter will always struggle. That our lives are scheduled around school, therapies, doctors appointments and not play dates, gymnastics and ballet.
We will struggle with Boo. For freaking ever. This will not end. That although our children are always our children Bridget will forever be our child and not the mother of our grandchildren.
That I look into Boo’s eyes and see how beautiful she is yet think if only….
You are not alone
A year ago, Kelli Stapeleton failed to kill herself and her daughter. Issy recovered from her injuries and Kelli went to jail awaiting trial. Yesterday it is reported she plead guilty. Before you judge her and her situation, I ask that you read today’s Throw Back Thursday Post: Remember the Parent. Remember to offer to help before you offer to judge. Talk to that woman in the elevator. Offer support, a shoulder or empathy before offering judgement of a life you know nothing about.
More importantly to the mom who is facing a situation like Kelli, remember you are not alone. I’m here. I’m listening. Reach out now before it is too late. There are ways to get your village of support. There are people who understand. If you are desperate, know that you are not alone. You just have to call. You might not think so, you might be in such a dark place that you think you are alone that no one understands. You are wrong, so wrong.
The Good Smaratians 1-877-870-4673 or the National Suicide Prevention 24/7 hotline for assistance: 1-877-273-TALK Or please utilize the Autism Speaks Crisis Intervention to find more avenues of support.
Or contact me, Kerri at firebailey@gmail.com I might not be able to help but I can listen. I can be there. I can help you find support.
Just know that you are not alone.
The post below was originally posted 23-SEP-2013
I’ve been really hesitant to write this post. First, I hate to jump on a bandwagon. I also hate being late to a party, even a pity one. Mostly, though, I do not ever want to come across as ungrateful or one that complains.
Truthfully, I have absolutely nothing to complain about. I am beyond lucky. I acknowledge that my situation is as wonderful as it is rare. I have a terrific village who supports my sanity. When life gets overwhelming I have some one within a text, an e-mail, a call or a walk to lean on. I get date nights with my husband and girls night in.
Not everyone is this lucky. They are isolated. They stay at home with their child, change how they go to Worship, do not attend family events, cannot find a babysitter and not even think about getting a pedicure. Moms like Kelli try to do everything right. They think that it is less disruptive for their child to stay home. They feel family gatherings are too hard to keep everything together and peaceful.
I do not know Kelli and only know about her circumstance from Julie, Jill and Kristi’s blogs. But I do know that not every child is like Boo. Some children with special needs are violent. They hurt themselves and those who love them the most.
When Kelli tried to kill herself and her daughter there was a lot of condemnation. People have a difficult time understanding suicide. Let alone a mom who tries to harm her child.
The sad truth is, Kelli is not the only one out there. Statistically children in the US with special needs account for almost 10% of those who are abused. And they are abused by their caregivers. This is not just the US. World-wide disabled children are harmed more often than typical.
This is just supposition on my part, but I believe the abuse and the killings and the suicides happen because the parent has little or no support. We are very lucky where we live. Our Boo has a terrific school, after school therapies and other support. But those therapists and teachers deal with our children hitting, spitting and hurting them. Yet they love our kids. They want our children to succeed.
Parents and caregivers are becoming the walking wounded, suffering from post-traumatic stress of living and working with a child who punches, kicks, sets fire to the house and destroys relationships. We love our children. We hate what their disability makes them do.
There is a difference.
There is also a reason why persons who work with children and adults with special needs have an extremely high burnout rate.
While our children in the US have a tremendous amount of government support available (if you know where to ask) for them, there is zero support for the caregiver. I am not talking about financial. I am talking about emotional support. That shoulder that you need to lean on.
Since I have that support I know full well what those of you without it must be feeling. Know that you are not alone but you have to let us know you need it. My friends know because I go to them. I break with Boo’s therapists and vent to her aides. Sure a few will reach out, but the responsibility is mine to say I cannot do it on my own.
So I implore you, the Kelli’s out there, to know you are not alone. But you need to scream and raise the white flag.
And if you know a parent out there with a child who has special needs reach out. Stop by their house tonight with a pizza and a bottle of wine. Stop by and check in on them. Keep inviting them to events, even if they have to say no. Remember that e-mail is great, but you can hide there. Call, speak to them. Make sure they know you are available to listen without judgment.
Let what happened to Kelli be a lesson to all of us to reach out before there is no one there to catch.
My Challenge: Echo
Today’s My Challenge is from Echo a mom blogger who writes about the joys and tears of home schooling two children, one with autism and one with a diva issue.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com
TBT–Out of the Mouths of Babes
Welcome to Throw Back Thursday, blog style.
(Originally posted 18-JUL-2012)
Abby is taking some summer help in math at a local school. This morning when I dropped Abby off she was telling me about the kids in her class. Some were from her current class and others she didn’t know. Abby said that there was only one other girl, a bunch of boys and one weird boy.
What’s that? Abby replied.
I think as children get older they may become more aware (and yes, mean). But at Abby’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.