J-Bear and Me

learning to navigate the world, j-bear style

Month: August 2014

60 Days and Questions

Today marks 60 days until J meets his fur-ever friend. It would be a complete understatement to say we are excited. He is understanding finally what we are going to be doing and he, like most 4 year olds, wants results right this second. He has a stuffed Nonie (Baby Nonie Dog) and I am trying to keep him as busy as I can manage. He does not start school until September 9th however, so until then I am going to be hearing a lot about “Yeh-no” and “Nonie Dog”.

I could not be happier.

Since we have engaged in full boogie tilt fundraising for our trip, I have received a lot of comments and questions various places. The biggest comment is on the amount we fundraised initially to receive J’s dog: $13,000.

That’s a big amount, unless you’re some ginormously wealthy soul. That’s an overwhelming on paper to a small family. It is true that most if not all of the people I talk to regularly or know cannot simply plunk that down. It’s just not possible, and thus makes a service dog for our children seem wildly out of reach.

4 Paws knows this. They get this. They do not want their dogs to be inaccessible due to money. This is why when you get accepted into the program, the agreement you sign is not to pay $13,000* but to fundraise and share the mission of 4 Paws for Ability. It is but a part of the cost to raise and train our dog, and in fundraising we’re raising community awareness of just what service dogs can do for the disabled – both children and adults, though 4 Paws keeps their focus on children and veterans.

We spent 6 months fundraising. It was hard. There were times it was absolutely painful, I dare to say, yet it is so worth it. It is worth it beyond the amount we raised, and worth it beyond what I can put into words. That money will provide my son with something I could not otherwise give him: He will have a companion and a guardian in this dog. He does not have to be scared. His family does not have to be scared. If, God forbid, J ever got away from us this dog will track him down straight away.

That. That right there, added to everything else this dog will be trained to task for, can’t have a price tag placed on it.

We have also gained through this process a phenomenal support group of 4 Paws families. I have made some fantastic friends and look forward to making more through this journey. We also gain a backup. If anything should happen with J’s dog, they’re there for us. If the dog needs refresher training, they are there for us. If we have any confusion or struggles once we are home, they’re a phone call away. They want us to succeed and give us every tool by which to do so.

Is it worth $13,000? Yes. Again and again, yes.

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*= The current amount one must fundraise if they join the program today is $14,000. This is still just a part of the $22,000-$24,000 it takes to breed, raise, train and support a well-trained service dog.

The Great Mini Giveaway!

I am so excited to announce our Great Mini Giveaway is underway!

Two months from now, we will know who our match is and even better, we will be in our hotel in OH giddily awaiting meeting our new family member.

We are giving away an iPad Mini to help defray the costs!

How’s that work you ask?

For every $10 donated, we will give you 1 chance to win this giveaway! Every $50 gets you 6 chances! Just think, if you win you’ll get to relax with an adorable iPad Mini and feel good about helping a boy meet his service dog every time you use it for all your iPad needs.

All of the details are here: http://www.jbearandme.com/the-great-mini-giveaway

Please feel free to share, share, SHARE our story! The giveaway will be made on September 26th at 8pm EST! CORRECTION: The drawing will be made at noon on 9/27 to allow the grand master himself to be at his most camera ready! 

Crystal Ball

I was blessed with a chance to get a small glimpse at what our future with J’s service dog can hold. J’s friend, Z, received his dog earlier this month and his mom invited us down to meet the newest member of their family.

Before I get to what happened upon meeting him, let me tell you I had zero clue what I was going to encounter in terms of J’s behavior and reaction. I knew this dog would be a model canine citizen. He graduated as a service dog from 4 Paws for Ability and their dogs come highly trained and recommended. I knew this dog would also be a perfect fit for his boy, and that he would be trained to do all Z could need him to do plus even maybe a little more.

J was the unknown factor. My mind and unknowns can get really ugly, really fast. It’s a talent, I tell you. There has been such anxiety that I was making a wrong choice for my son somehow; that there was no way he would even care about this dog or worse, would be too nervous to ever be near the poor thing once we brought them home.

Safe to say, I am something of an idiot here and glad to have been proven so.

Photo from 4 Paws for Ability

Photo from 4 Paws for Ability

Enter Leno. He is a handsome golden retriever/labrador mix, gold of hair and sweet of face. Second of his name, but less of chin, but I digress. He is sturdy, handsome and absolutely the single most laid back dog I have ever met. He exudes this mellow air of confidence and subtle, gentle curiosity that needs no great action to convey, especially to children like Z and J. They just get it immediately and he gets them, especially his boy. He regarded J and I with curiosity and interest and let J approach him. This was key. His training and L’s handling shone like stars in this moment.

J approached him with exuberant interest. He was nervous, as his giggling betrayed, but he was interested. He learned to say Leno’s name. He patted him. He touched his head. He circled back to him several times during the length of our visit. If he looked over and Leno was dozing he yelled at the (poor, dear) dog to wake up!  He got a chance to play a brief game of ‘fetch’ with Leno and found he loved it and loved having this dog be as happy to play with him as he could have ever wished. You see, J frequently tries to engage other children who are running around and most sadly ignore him. They don’t understand how he is trying to engage them, and even when I facilitate active chase and tag and play, children who don’t understand look askance at J and leave him be. His dog, well… We now have seen that he or she won’t.

Then it happened, a moment of even greater magic: We were out to eat in a local greasy spoon and L offered J a piece of treat to give to Leno. J, who I cannot get to touch much in the way of anything food related, took it readily… and let Leno eat it right out of his hand, laughing when he was licked by the gentle dog.

A child who resists hand washing, hates dampness that is not from obviously running water, freaks out with a drop of anything spills on him and is not cleaned immediately allowed a dog to eat from his hand and thought the licks he got were funny.

It’s hard to write that without tears. It may seem overstating, to draw it out like that, but this is a keen example of an everyday occurrence that can be a startling breakthrough for my boy.

This wasn’t even his dog. This was his friend’s service dog.

Can you imagine what his life will be like when he meets his dog in two months? It’s going to change so much, and for the better by a thousand miles. There is no doubt now, only intense eagerness for the moment he and his future dog meet and a renewed drive to get funds raised to help get us out there. More on that later though. For now, I’m just going to sit back and remain in star-struck awe over the gift L, Z and Leno gave to us!

A note about this post: Z’s mother is the fantastic photographer responsible for the pictures of J and Miss Kitty on the beach last summer. If you’re looking for an MA area photographer capable of not just fantastic work but understanding of children with special needs and able to show their inner light with ease, please visit http://www.myfamilytreephotography.com 

But He Talks!

J has a whole lot of words. He learns words by the day, gaining a few here and there in this wonderful effort towards grasping the art of communication. He describes things, he makes curious questions, he even has exclamations that crack me up.

This leaves us in a strange situation.

See, I frequently have to defend the fact that when I describe him, I use the term “nonverbal”. Now, I can understand why some of the static occurs. It’s a misleading term. People confuse “nonverbal” with “mute”.  Nonverbal means “not using words and terms for speech”, which leads to quite a grey area when it comes to J. He has words. However, a lot of those words are not functional.

Conversations with J are very simple. They are not detailed, they are not nuanced. Granted, I am not expecting to discuss the finer points of Plato with my 4-year-old, but we do not get beyond the level of perhaps a 2.5 year old with his speech some days. Other days, we get fantastic statements and great phrases, but they are simple. He is very simple, and very direct, with his words. He does not understand concepts like “hungry”, “thirsty”, “wet”, “dry” but he understands “cereal”, “milk”, and “water”. It has to be concrete and visual to be quickly understood or it is lost.

This is just how it is, and you know… It’s okay. We figure it out, but it’s why he will continue to be noted as nonverbal for the sake of those just meeting him. His language skills when reaching out and interacting to the world outside his closest people is severely limited but he can, and will, try when he is ready and willing to do so.

Also, if you happen to meet him, he’s highly likely to greet you with “no”. Not “hi”. No. Or “not yet”. That’s his way of letting you know that he recognizes you’re there, but he’s not quite sorted you into his world view. He’s working on it, and when he’s ready and got things adequately settled he returns to you in his own way. He is always encouraged to say hello, to be friendly, but I will never force him into niceties he is not yet ready for. We just have to find a more constructive way for him to do this than saying “no”.

Funny, I just wrote all these words about J and his relationship with verbal communication and I have to laugh. He rarely remembers names for people, or even cares much for them, but Nonie Dog, she has a name. Always a name. I think this name will stick for whoever our dog shall be just because his little voice is so sweet and adorable when he says it, as though he is laughing as he says it. I love it.

Future Tense

My heart is still so heavy about a man I never met. Maybe I am just so sad because the turmoil seems so very familiar and thus, so very painful. Maybe I am sad because, looking back at his body of work, he was one of those faces that has always been in the world since I was a child. It’s hard to say, but the sad remains.

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I am in this weird state, and it is generally surrounding J’s dog. We under 80 days until we meet his dog and it feels so much like when I was waiting for J to be born but with markedly less discomfort and cravings for strange things. All of the fear, anxiety, anticipation, excitement and eagerness collide on a regular basis but thankfully for now in a low-key manner. I want to know his dog. I know 4 Paws will pick his right dog. I cannot wait to see J with this dog, and see the life changing things his friend Z is going through right now.

Then there is the panic. The “oh my God I have this, this, this, this and oh my god this that needs to be done!” and the panic over fundraising to help us along in paying for our long stay out there… My stars. I don’t know if this is just part of my own general weirdness or not but when there is a lot to do, I can get paralyzed real quick. I am trying to work it down into bite sized pieces but the pieces are all sort of on hold. It’s hard to do a lot of the heavy work while J is out of school, and he does not go back til September.

See, that is the other part in all this. J is out of school for several weeks now. Children like J thrive on routine. That is when he learns and grows the best and is happy. He does not have it in the sense he needs it right now. We had a down day today, for example, and while he did mostly fine he lost it right around bedtime. Bedtime is the same time every day, mind you, but without the busy busy busy day leading up to bedtime, bedtime gets downright insane.

How do I add a dog to our crazy? Will the dog really help our crazy? I ask myself so many questions, but following the tales of other families I am slowly having more faith that the dog will do exactly what we need them to do. They will fit our lives just fine, and they will enrich our lives.

J is still talking about Nonie Dog. He is so giddy about the Nonie Dog in his mind, but I still do not think it will truly matter what dog we get. Any dog will be loved, and he loves animals regardless. I think it is just such a fun name for him to say, and he truly does enjoy her sweet face, so the association is happy and positive and will I pray make this addition to our lives easier.

Could I be any more all over the map? Welcome to my brain, internet.

In closing, here’s our countdown counter – It’s also on the right side of the main blog page:

 

The Dark Night

Sometimes, it feels like you’re stuck in this unending dark night. There are no stars to guide you. There is no moon to light the way. You are stuck in a painful, soul rending darkness that no one else can see. The world is moving around you like you are not even there, alone, stuck in torment.

You feel not worthy of life. You feel unworthy of love. You feel a burden upon any who know you and like they would be so, so much better off in the long run if you were just gone.

It’s tempting. Walking so far into that night that you never return is so, so tempting. It seems a solution for a pain that will not ebb. It seems the best way to handle that which you cannot adequately put into words. You feel like no one will listen, no one will care, and no one will understand.

You’ve reached out. You’ve been called crazy. Unstable. Broken. Wrong. You’ve had people roll their eyes at you, shove you away, blow off your words when you try to express your pain; your needs.

The moments come where you feel like there is no choice. This is it. All else is hopeless, you might as well let go by any means possible. Just end it. There is no fanfare, no loud cry for help… The moment just comes.

It came for me twice.

The first time it came, I sat in a bathroom convinced that the abuse would never end. I would always be knocked down, beat up and for all intents and purposes no more than a tool for those in my life. I was to be used, and that was it. I held no worth, I deserved no dignity. But my friends, dear friends I hold precious and close to this day, didn’t know exactly what the situation was yet still they reached out. They shined a light into my dark night, and slowly the guided me first to safety and eventually to a place where I could see, breathe and be again.

The years that lead to that first episode and the years that followed did damage. This damage accumulated, weighing down the fragile system I had for coping with the world around me. The year following the birth of my son, I could not find up. I could not find any which way out of that dark night once more. It was so much worse this time. It was so painful, everything around me was filled with terror; with the anticipation of violence soon to come. My son would be taken away. I was not deserving of him. I was not a good mother. I hurt my son. I should never have had my son. How dare someone like me ever have a child.

My mind was, and sometimes still is, my most vicious enemy.

The little boy I feared so much surrounding was the one to save me. It was early into my pregnancy that I swore I would never leave him to feel abandoned as I often did. He would always feel loved, wanted and cherished. It was so hard to find my footing, to know how to be a good person for him.

So I called my doctor. Of all people.

And I got help.

I got help despite those who spoke ill of it, and that appointment was the day the light came back once more.

It would be a lie for me to tell the world that life is perfect. It is not. I struggle with complex PTSD every day. It’s part of my natural operating system now. It comes with heavy depression sometimes, but I have a shining little face that drags me back even when I feel like I might not want to be. I am lucky.

Not everyone is. Not everyone can find their light again. Depression is a vicious, terrible mental illness which is often blown off in terms of how severe it can impact a person. Suicidal thoughts, no matter what the condition is that leads one to them, are no joke.

You are worth it. You are worthy. There really is at least one thing to live for, if not so many, many more. There is help. If you feel yourself slipping into that dark night, please call 1-800-273-8522 – It is the National Suicide Prevention Lifeline. Let their staff help you, or reach out to someone you trust that can direct you towards assistance. You aren’t alone. People will listen, and they will care.

Rest in peace, Robin Williams. In the words of Aladdin: “Genie, you are free.”

Test Drives

It seems I am test driving a lot of products lately. I imagine this is a common thing among parents, especially parents of sensory kids, but sometimes I feel like I am isolated in it.

That is until I hit Facebook, but anyway.

We are test driving a few personal items for J. Also, we are trying out Chewigems. They arrived today and let me just say, I am so far impressed. I ordered them August 8th. They arrived this morning, August 11th. I had anticipate them later this week so this was a pleasant surprised, and they arrived not a minute too late! J has been chewing as one of his major stims a lot lately. He will chew anything he thinks goes in his mouth. He favors chewing on a pacifier which is, as one might expect, dangerous. It is not made for chewing. I barely got his Chewigem (this one) out of the package before he was grabbing it up and putting it in his mouth after I mentioned it was for chewing!

It’s sturdy, I love the break-away style cord… I’ll follow up in a week or so and we’ll see if he’s stuck with using it. There’s another style I purchased too but I’ll bring that up when he comes around to wanting to use it. He’s pretty happy with the disc one! I am happy too. Unlike chewy tubes, he can’t push it into his mouth to the point he gags. He does have a hollow tube on a string from his OT yet he only might use that in the car. That’s its home, which does us no good when most chewing occurs elsewhere! The cord keeps it around his neck so when it inevitably gets dropped it is not lost. I am hoping this means no more rescuing what he needs for chewing from manky shopping carts.

I am gushing. I need to stop.

We are also using our RoadID again soon as the shoe tags will work on his sneakers. I love these tags. We’ll be getting a similarly styled tag for his dog, but from a different company.

Aren’t we the pinnacle of exciting? Go on, sport your green of envy with pride. It’s okay. 😉

 

The Nonie Dog

One of the perils of our wait for J’s service dog is looking at all the dogs in training. I follow them as much as I can without being intrusive on the lives of the foster people. There are families who foster and college students who foster, all of whom offer a brilliant foundation for advanced training. The foster system usually takes over training after the dogs receive their basic obedience, though sometimes the foster families take the dogs from weaning right up until it’s time for advanced training to begin.

Now, that all said, J has fallen in love with a dog.

Please be aware that I never, ever, for anything on this earth, tell him any specific dog is his dog. I ask him daily “what will your dog be like? Will they be a big dog or small dog? What color will your dog be?” and questions of this nature just to keep dogs in his awareness and to keep him associating that a dog will be a part of his life at some point. There is never anything specific. Some of the answers I have received include: small mama dog, small blue chicken dog, dolphin dog, white dog, blue or purple dog.

Easy requests, right? But at least it has him thinking….

Until he remembers her.

Ain't she a beauty? Photo courtesy of her foster mama

Ain’t she a beauty? Photo courtesy of her foster mama

Meet Nonie. Nonie is one of the 4 Paws service dogs in training. She is currently in advanced training and was fostered by a lovely young lady from one of the area universities with foster programs. She appears a loving, playful and sweet girl and J could not be any more smitten. He sing-songs about “Nonie-dog” frequently now. It is as cute as it is vaguely worrying.

I was reminded today though that no matter what dog he gets he could call them Nonie Dog. It would be Nonie Dog, the First of Her Name. If it is a “her” at all, of course. If it is a him… Well, we’ll see what happens.

Asterisk

There are days where I feel like everything I say or write should be followed by an asterisk.

I tend to forget that the way I see the world, especially in regards to how I see everything surrounding my son, is slightly off from the expected center. The mainstream world is going one way and here we are, off the sidewalk by several feet but making our way along just dandy. I forget that people don’t always see how the scenery is over by us.

That’s when anxiety takes over.

You see, forgetting this can lead to misunderstandings. When I comment that J has eaten so many foods in one day, it does not mean what you might think. It means that rather than eating only cereal and drinking his milk as usual, he ate three other different items off his very limited menu as well. He might have even had a sip or three of water. This for him constitutes having had a bunch of different foods where as the rest of us might think that was just breakfast.

That’s our life. Everything has an asterisk, warning that for those unwise in our ways it may require further explanation. The more I write in this post, the more I realize how oddly at peace I am with this fact. The asterisks are for people to gain knowledge they lack otherwise if they so choose. If not, they buzz merrily along. It’s nothing lost on our side.

The perspective that life with J has given me is, quite simply, astounding. He placed me in a position where if I did not open my eyes and start seeing the world from where he stood both of our lives would be terrible. Painful. Miserable. It wasn’t by force that he did so, it was by need, and a need that was so easy to answer once found and understood.

I like being in his world.*

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An update on 4 Paws dog brother Gabriel, who was desperately ill in a local veterinary hospital: He’s gone home to Texas! He continues treatment there but is home with his veteran and his family. The hope is that soon enough he’s fully back to service life, something that I bet both dog and person are very eager for.

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*= Just put it there because reasons. Also, I just finally learned to spell “asterisk” correctly.

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