J-Bear and Me

learning to navigate the world, j-bear style

Month: May 2013 (page 2 of 3)

Super Exciting AWESOME News (and less awesome news)

So the less awesome news first: Tonsils will be parting ways with Jacob on 6/3. It is what it is. I feel the benefits far outweigh the down sides to the entire decision and we cannot effectively address his eating issues til the physical issues are managed. So, that’s scheduled, moving on!

A few weeks ago I wrote to the most awesome Derek Benson who makes Lunchbag Art for his very, very lucky children. I had seen an article on Yahoo! about what he does and had a blast showing the pictures to J, especially when we saw Minion from “Megamind”, his all time favorite movie. I had nothing to lose in asking him to help us with our fundraising and I am very, very excited to share with everyone the image he came up with and our fundraising t-shirt campaign through Custom Ink!

The whole thought I had, scant though it may be, was to convey the bond between a boy/child and their dog. Here’s what he came up with: 

Image

 

Incredible, right?! The best picture of J I have plus a hint of who his companion down the road might be all in one image… I’m such a sap that I was tearful the first time I saw it. 

Thanks to Brendan at Custom Ink this beautiful image has been put on shirts. You can find them here:

https://campaign.customink.com/teamjacoblyfor4pawsforability

We are committed to selling 100 shirts before they go to press. It will raise just over $1,000 towards our $13,000 goal. If we fly through selling 100, we’ll just have to open up a second campaign won’t we!

Share this around if you can! I’ll add it to the main fundraising page. 

 

IEP Update and Miscellany

Yesterday the public schools graced us with their presence while J was at playgroup.This after a few curt exchanges in the weeks prior. I was barely greeted by them (really, guys?) and they spent maybe 30 minutes in total observing what happened to be a very chaotic group day. Group always has a little bit of chaos to it, that’s what happens when you get that many 2-3 year olds in a room, and yesterday just kind of highlighted that fact. 

I’ve said it before and I’ll say it again: His playgroup is about the most awesome I could have ever wished for. The children have all been absolutely amazing and their parents have all been wonderful. I am seriously tempted not to let J turn 3 so we can stay with them forever.

Anyway, that’s where we stand with the schools. I am now awaiting the date for his IEP meeting and am terribly convinced that this meeting will be a huge war. I have sadly no trust in the school’s staff to do what is right by my son after some of the behavior I’ve seen and while I am willing to be flexible in some regards, I refuse to see my child short changed because the schools want something easy or because they want to use a cookie cutter method on a child that simply cannot and will not work for.

We’ll see.

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We have an appointment with the ENT this morning for the results of his sleep study and a discussion about how to proceed in regards to his tonsils. His primary care doctor armed us several weeks ago with a prescription for liquid zofran, which helps curb his ability to vomit, but the gagging is assuredly still there. I am curious to see what the ENT has to say and see if his apnea is neurological or merely one of several physical side effects of having tonsils the size of boulders.

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This is a perfect snapshot of a day in my life with J – we were driving to group yesterday and he was chattering in minion in the back seat as we were turning onto the street that leads to the early intervention center. Amidst his rambling, I started to hear oinking sounds. He’s got the pig noise down pat thanks to Peppa Pig. So, like any good mother, I oinked back.

And he oinked back. 

And I oinked back

And this went on all the into the parking lot at the center. 

He sure doesn’t talk much but when we do have “conversations”, they’re hilarious.

Oink oink oink.

Elopement/Wandering

Today, the family of Mikaela Renee Lynch found themselves in the depths of one of the worst horrors that can be visited upon them. Their beautiful daughter, just 9 years old, had wandered away from their home on Sunday. Like J, she has autism. Today, she was found in a creek, deceased. 

This isn’t the sort of subject I would usually write about. This family’s grief, their sorrow and what they are going through is what I count to be amongst my greatest fears for my little boy. He’s just shy of 3 and already a bolter/runner. If he could work the doorknob, he’d be out the front door I have no doubt. He has his own agenda in this world and if there’s a body of water larger than a puddle, he’s right there despite having no knowledge of how to functionally swim or deal with said body of water outside of being within my arms or in a safe bathtub. 

There are people in this world who will blame the Lynch family. I know it. I’ve seen the ugly that is in this world and I have to acknowledge it. I don’t. I can’t. People in this community are likely to be similar in thinking to myself I would hope. Our children, our loved ones – they cannot live in a vacuum. We cannot button them up in safe, soft rooms away from the world. The world deserves to know them and they deserve to know it. We can put up every lock, every barrier, every safeguard but things can, and do, sometimes happen. It’s in these moments we pray for the best outcome and gird our hearts for the worst. It’s in these moments we stand by, ready to support those who face the darkest news.

I have a few resources for those of you who might read my rambling and want to know more about how to keep your loved one with autism safe. There is no 100% fool proof method in this world, but every little bit can help.

AWAARE Collaboration: The Autism Wandering Awareness Alerts Response and Education Collaboration offers great educational materials as well as safety items. It is the collaboration of six major autism foundations and a source of invaluable information and tools.

The Flutie Foundation Safe and Secure Project: The Doug Flutie Foundation works with LoJack SafetyNet and local fencing companies to help families in need keep their children safe. This is very New England-centric.

LoJack SafetyNet: LoJack offers a bracelet program that helps track children or adults prone to elopement/wandering. When emergency responders are contacted they trigger the signal, tracking it to bring your loved one home. Not the most inexpensive of things but if you have a child or adult in your life who is prone to getting away, it may be worth its weight in gold.

I could probably sit here all night posting links to help keep our families safe. My son will have his dog once we finish fundraising, a dog trained to track him should he elope, and I equip my son with two dogtags located on his shoe: One reads his name, the fact he has autism and limited speech, and my number. I had it made here. The other is a MedicAlert tag for emergency responders so that they can have access to his medical history immediately and know he has the delays he has plus other pertinent information if care is needed. These are just some measures to ensure safety but I am sure the great parents I have interacted both online and off have some awesome measures they take too.

I know the Lynch family may never see this but my thoughts and prayers are with you and yours. You loved your daughter in the time she was with you and I know nothing can remove the blame we, as parents, take on ourselves whenever anything happens to or with our children. I cannot tell you that you’re going to be okay tomorrow because you might never be the kind of okay you once knew ever again. You’ll find a new way to be. You’ll learn a new way of living. We, as a community, will be here for you along the way. 

How To Be a Mother

Mother’s Day is a strange holiday for me. I have not had a significant relationship with my natural mother for years. My maternal grandmother was sadly gone from my life by the time I was 15, through little fault of her own, and the maternal figure that my father brought home for me was a disaster and a half. Women, good women, were infrequent in my life until high school due to my father’s poor life choices. I grew to ignore the holiday nearly entirely but for one lady.

I called her Nana Anna Ryan O’Brien. She was my father’s mother, a woman who was dealt some hard blows yet always without fail had the most amazing smile and the warmest heart. She raised my father and his two brothers with the help of her parents after her husband died of walking pneumonia within weeks of her youngest son’s birth. She worked, supported her family and never ceased to love my Papa, David Ryan, right up to her dying day. She treated the world with love and humor yet never took any nonsense. Whether it be that she had to sit down with me all night to get me through math homework as I was absolutely stupid with math or that she had to plan to go to the bakery for cupcakes so she could tell us she baked all night before we came over for a visit she always just did the best she could by us kids. 

My Nana was the rock of my childhood. I have so many memories of sitting in her little house near Wollaston Beach huddled around her little kitchen table or snuggled down in her bed beside her for a safe night’s sleep. My only memories of feeling loved as a little girl came mostly from her, though I have some fond memories of my mother’s mother taking me to spend time with her as well. I was never a burden to Nana. I was always just right and just loved. 

1999 was a tough year. The day I got the phone call that she had been diagnosed with cancer was a rough one. It was the end result of Hepatitis C contracted through a transfusion in the 1980s and she wasn’t going to go through lengthy, draining treatments that would diminish her quality of life. Her courage was amazing. She traveled while she was still well enough to do so, going around the US and visiting our relatives in Ireland a last time. When she was finally too sick to be alone the answer was natural. We’d bring her back to her little house and we’d make the end of her life comfortable and content.

I’ll always wonder if I gave her even half of the comfort she gave me in my life while I helped care for her in those last months. The sound of her voice quietly saying “good morning, pumpkin” as I came through the door each day gave me the strength to keep going even when I was tired, strained, sad, worried… It made all the hard stuff easier. Even as she was facing the end of her life, she shielded me as a mother should shield a beloved child from the worst of the world when possible. Her worst episodes, the most difficult parts of her illness, somehow always happened when I wasn’t there and I was there 5 days a week, sometimes 12 hours a day! We laughed together, we cried together, we drove each other crazy and from it all, I learned so many lessons that bring me here to the present day.

I sit here now with a little boy who bears her smile and mischievous nature and I thank God each day for all that she taught me. She taught me how to just love and accept. She taught me that I had some worth. She taught me that I can be something to someone and that I am strong enough to do the toughest things. She and my beautiful stepmother Robin along with my Queen Mum Beverly put every tool in my toolbox to help me be the mother I never had to my little boy, a little boy who needs a mom a lot. 

So, when you see my little boy doing something great, thank these ladies and the others who have walked through my life since I was 16 onwards. I know I do. I know a lot of people aren’t religious, and generally I am not overtly so, but I have to say that God saw I had a need’ an empty hole in my world and He filled it to overflowing.

Thank you, Nana. I love and miss you. 

So a little pic spam to brighten up

So a little pic spam to brighten up the day.

Once upon a time there was a baby dragon…

Image

zzzz

Who had the biggest grey eyes I’ve ever seen.

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i’m here for your ice cream

Of course then he got an iPad and I stopped being in charge of photos, so you get stuck with this for now 😉

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Hopefully these made someone smile.

I hope to be able to write more soon. We shall see! Until then, another huge thank you to all who have donated or spread the word about Team Jacobly for 4 Paws. The response has been warm and encouraging – it means the world to me.

Fundraising Bracelets!

Fundraising Bracelets!

The bracelets have arrived. The back reads “Paws for a Cause” in the same font as seen below. If you’d like one and have already donated – contact me with a mailing address. I’ll be happy to send one with a thank you card!

If you haven’t donated yet and would like one we are giving them away with any donation. Just email me with a mailing address: galebird(at)gmail.com

Hopefully I’ll be updating with information about t-shirts too!

 

backbracelet

SenseAbility Gym

Me and my little monster had the pleasure of being invited to meet some lovely moms and kids today at SenseAbility Gym in Hopedale, MA. I was nervous about going, not because of who I would meet but because I could not predict how J might behave. However, looking back, I realize I likely never should have been.

SenseAbility Gym was conceived by people who get it. They have seen their own children struggle with sensory needs that aren’t easily met in typical environments. They are parents of the runners, crashers, bangers. They have the children who need the squeeze box, or who sometimes just need a room with dim lights and a cozy bean bag chair. They have taken the best elements of some of the local gyms for kids as well as some of the better pediatric occupational therapy or physical therapy clinics and brought it all together in a fun, clean, easy to access and easy to enjoy space. It is kid friendly and parent friendly, right down to the restroom having a changing table for those of us who have children still in need of one. 

I have taken J to places like Monkey Joes or Jump on In before, both to dramatic failure. This isn’t the fault of the facilities. Each of them are fun, bright, wild and fun for most children and for most children, I’d recommend going back again and again if you can. When you have a child with autism, sensory processing dysfunction or any other similar type of obstacle it is a place like SenseAbility that can not only give your child somewhere safe to just have fun but give you, their caregiver, somewhere to meet other adults who are dealing with what you’re dealing with. 

Thank you to Alysia for the invite and to everyone who attended for making our Sunday a great one. Little bear is sleeping like a log right now, hopefully having some good dreams about the fun he had with the boys today. 

Brighter Day

Last night I went to bed on such a low, sad note. Yesterday was awful.

This morning, I woke up to find that a request for a retweet had not only been answered but been answered warmly and happily!

If you want a great twitter to follow, check this gentleman out. He spreads joy in NYC one candy cab right at a time: https://twitter.com/CandyCabNYC

Our story is getting out there, little by little. You can help too! Retweet, reblog, share… You can share his Team Jacobly for 4 Paws page (here) or just a link back to the blog.

We’re going to blow this goal out of the water I hope. 

The Hard Parts

There are things that are going to be hard regardless of autism in our lives.

Today, it was a blood draw for a couple of genetic screenings.

There is nothing that can prepare you for these types of things. You know you are doing what is right for your child and yet everything in you is screaming “TAKE YOUR CHILD AND RUN!” even as you sit there, holding them still through something that obviously pains them.

I hate it.

He does not have the words to say he’s hurt or scared. His crystal expression, his anguished cries, all of it is eloquent enough. I can’t explain any of it to him. I can’t walk him through the bit by bit of what’s about to happen, how well he’s doing when it happens, and encourage him to realize how fast he’ll be okay again when it is all done.

This does not stop me. Even as I cry along with him, I whisper in his hear how good he’s doing and how strong and good he is. I whisper how it will all be done soon, how he’s such a brave and sweet boy and how sorry I am he has to do this.

And he wails. Tears stream down his cheeks and he cries, desperate for escape and peace. He hyperventilates and almost vomits. He can’t control his reactions and I cannot blame him for it. I am overwhelmed too.

But he did it. He got through it. It’s done, for now, and hopefully for a long while.

Blood draws, EEGs, sleep studies, physical examinations… The cost of his diagnosis is not one measured effectively by looking at bank statements and hospital bills. It is best judged by the physical, emotional, and spiritual toll. It is brutal that getting him appropriate physical care is painful and terrifying to him. It’s a trauma, no matter how minor, to bring him to the doctor and put him through the visits and it’s a trauma that is not just to him but to myself, but I have to remain strong. I have to do it. I have to hold his hand and see him through it.

But my heart hurts.

He’s my son; he’s my sweet and darling baby boy. It is my duty to protect and nurture him but I won’t deny the pain I am filled with when doing right tears me to pieces inside.

We have one more medical visit this month, May 17th, and we’ll know then how we are proceeding in regards to his tonsils. This might all get significantly harder before it gets better. I just have to buck up and get through this and learn not to cry in front of the medical professionals who think I am insane when I end up crying right alongside my wailing child.

Whirling Dervish

That is what this week feels like. I am starting to believe that all weeks are going to feel this way: chaotic whirling dervishes that leave me so turned around by the end of them that I am not even sure where’s start and where’s stop. 

But this is life, and J never rests.

Tomorrow is something like this: 

— Speech therapy

— Genetic Screening in Boston

— ABA 

Now, do you think he’ll nap anywhere in any of that? Because it would be my fondest dream that he would but let’s face it: all kids J’s age run on their own agenda, the only difference between my guy in most is that he doesn’t care to often share what that agenda is going to be.

We will get through it though and and hopefully it won’t be so bad.

On the fundraising front we’ve broken $800! Every single step that brings us closer to getting J united with a service dog is progress and all of it excites and elates me. I cannot wait til the day that I am writing to share his progress with his service dog with everyone who will have helped us get there. I can’t wait to spam you all with pictures of it too because, come on. Have you seen this kid? Him AND a dog… The cute, it will overwhelm.

Not that I am biased on his appeal or anything, being his mother and all.

T-shirts are in the works and I am very, very excited about them. The moment we have things ready I will be sure to update and share them with everyone so the word can be spread.

Now, I have to get back to fighting the good fight and figure out how to write letters to people I don’t really talk to begging them for their assistance. I am a party animal.

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