Boog

Boog

Friday, March 25, 2016

In Case of Emergency

I recently saw some decals online that you put on the inside windows of your car and they explain to first responders that the occupant has Autism. I think this is a fantastic idea, but I think $5.95 + $3.00 shipping is ridiculous. Special needs parents have so many expenses, let's not make a freakin sticker $8.00 🙄


So, I found a couple images online and also made my own (last one on the page). 

You can:
- Print a couple and tape them inside your rear windows
- Print and tape one somewhere on your child's car seat or booster seat
- Get some of that adhesive paper that is used to make stickers with your printer at home

Any of these options are a lot cheaper than buying several $8.00 stickers. This way, you can put them in any cars you use and not break the piggy bank.

Be safe,
Boog's Mommy












Thursday, March 24, 2016

Marriage: How do you do it? Seriously?




Over the years I've met many mothers of children with Autism and/or other Special Needs. I've talked to them about hundreds of subjects: treatments, therapies, diets, clothing, devices, and on and on and on. Yet there is one topic I have never been asked:

"How do you maintain a healthy marriage when you have a special needs child?"

I have been married to Boog's Daddy for over ten years now. Boog was officially diagnosed at two, but I started to worry at 12 months. That means that half of our marriage has been a marriage with a special needs child. 

Yes, we are still married. 
Yes, we love each other very much. 
Yes, he is still my best friend.

No, it wasn't easy.
No, it's not easy.
Yes, it's almost crumbled multiple times.


I was asked a couple years back to give a speech on maintaining a healthy marriage when you have a special needs child. I will link it here if you'd like to read it:


Making Marriage + Special Needs Child = Functional



There is no magic answer to how to make it work. I wish there was. All I can do is be honest about our struggles and give real life answers. Every marriage is different just like every child with Autism is different. You can't apply the same things to every one. There is no "one size fits all" for either subject. I know that's not very much help, but give me a minute.

I have had a diagnosed child with Autism for over four years now. I feel very blessed that I now get the opportunity to meet parents, usually mothers, that have a newly diagnosed child and speak with them about how they feel. I so wish I had someone to speak to those years ago, but if I can use that to help someone then it wasn't for nothing. 

I recently spoke with a wonderful mother who's child was diagnosed with Autism a few days before we spoke. I believe in 100% privacy! so we will call her Sally (not her real name) and her son Tyler (not his real name). Sally was terrified and so very sad. Tyler is verbal and has high functioning Autism. We talked about many subjects, and I will tell you about those I found most important for people to know. 

Per our school district, Boog is on the Autism Spectrum somewhere between mild and moderate. When we were told that I think they expected us to be upset. In reality we were thrilled to hear that Boog was close to mild. That meant he had the capability to go further. Sally has seen Boog in school and heard me speak about him. While we were talking she broke down in tears and began apologizing to me profusely. It went something like this:



Me: "What's wrong? Why are you apologizing to me?"

Sally: "Because here I am. I'm dumping this on you and asking for help when your son is worse than mine."

***This stung me quite a bit, but I knew she meant absolutely no harm. I never let her know it bothered me at all because she is in the very beginning of this long battle. I don't expect a new soldier to be aware of what they feel, much less what other parents feel.

Me: "The feelings you have are valid. It has nothing to do with where our children are on the spectrum. They're on it and that comes with the same emotions. You don't feel any less devastated than I did, so put that guilt out of your head. Right now you are beginning the stages of grief. I highly recommend you look up the stages and how they can come in any order, and some stages repeat. You haven't lost a child physically, but you have lost a dream child. While we're growing that sweet baby in our belly we dream the same things. We want our child to be healthy and happy, obviously, but we also dream about who they might be, thoughts like "This child may be a doctor or a lawyer! He might go to Harvard! He might change the world!" Now that he's been diagnosed you realize those dreams may not be possible and it's heartbreaking. That's the grief. You didn't lose a child, you lost the dreams you had for him and it hurts terribly. Eventually you accept this, and you make new hopes for him. Smaller hopes like "He will know he is loved. He will make friends. He will be independent. He will do things others may think he can't do". That will happen, but it takes a lot of time. Right now just realize what you're feeling is exactly how you're supposed to feel".

Sally: " My husband doesn't understand. He won't talk to me. I get so angry because it's like he doesn't care!" 

Me: "Men and women process things very differently. We are visibly upset and want to talk about it until we can find the next step or make a plan. Your husband is your family's protector. He feels his most important duty is to make sure your family is safe. If something goes wrong, he fixes it. Men are fixers and he just found out something very painful has happened and he can't fix it. He feels completely helpless. He may even feel guilty for not being able to protect his son."




Sally hadn't thought of it that way at the beginning and the only reason I know now is from years of struggling to understand why I wanted to cry and talk about every single aspect of my son's diagnosis and read every article while my husband couldn't bare to speak of it much for a long time. His pain was no less than mine, it just looks a lot different. It looks like it's not there.

The National Autism Association is offering a free webinar on March 31st about having a child with Autism, the strain it puts on your marriage and how to cope. Here is a synopsis of the webinar:



"Let's face it, autism takes a toll on our marriages. But it is not the death sentence we have falsely been led to believe. This presentation will discuss how the six cycles of grief impact marriages, and how to come through the bad days with a stronger union".

"The topics discussed in this presentation are not commonly covered in autism conferences. It is recommended for parents, both married and single. It is also recommended for individuals who are seeking a different perspective on how to overcome the toll autism has placed on their marriage and relationships. Traditional counselors are not equipped to address the unique issues that arise after a child has been diagnosed. The strategies discussed in this presentation will be sure to put a smile on the face of all who attend as they find the tools to “balance” after the diagnosis."



I put that part in bold because many married couples go to counseling and most of the time the counselor knows very little about Autism, which is not necessarily their fault. For them, It's sort of like trying to fix a giant hole in a boat with only a little rag. 


Here is the info on the webinar. If you're married, try to listen. If you know someone that might benefit from this, tell them because this subject is rarely spoken about and it is the second most
difficult thing to deal with after your child has been diagnosed. Hurry because it's only open to 500 listeners.


-Boog's Mommy

I want to be treated like a girlfriend again... and other thoughts on March 31st by the National Autism Association



Saturday, March 19, 2016

Spiritual Encouragement



Some spiritual encouragement parents of special needs children sometimes need very much.









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Exciting News! - A Letter to My Baby

I am beyond excited!! 

I cannot express how incredibly honored I am to have my letter to Boog featured on the amazing New York Times best selling author, Lisa Erspamer's website for her upcoming book, 'A Letter to My Baby'. Here is a brief synopsis of the book:

A Letter To My Baby is the fourth book in a series that celebrates the greatest gift you can give: a heartfelt letter written to someone you love.  The “A Letter to My…” series is a collection of personally-crafted letters written by people from all walks of life, including celebrities, everyday people and kids.

A brief bio on Lisa's amazing accomplishments:

Lisa most recently served as chief creative officer and executive vice president of programming and development for OWN. Prior to that, Lisa was co-executive producer of The Oprah Winfrey Show, where she produced and oversaw hundreds of shows, including the biggest flash mob in history, the legendary car giveaway, Whitney Houston's final interview, and many others.

You can read my letter to Boog below. After that, check out the other links about incredibly talented woman and phenomenal book that is in the works. You won't be disappointed! 



My Letter to Boog!






Follow 'A Letter to My Baby's progress on:

Facebook

Twitter

Instagram


Also check out Lisa's Amazon page where you can order her previous books with letters written by celebrities including Kristin Chenowith, Lisa Ling, Kelly Osbourne, Shania Twain, will.i.am, and Christy Turlington, Rosana Arquette, Gina Gershon, Dr. Phil McGraw, Hilary Duff, Tony Bennett and more:

Saturday, March 12, 2016

Progress!!!!!

This week was our Spring Break and Boog has done some AMAZING things! I will have to make a post later when I have more time with all of the details, but just know this:

God is Good!

So happy,
Boog's Mommy


P.S. Don't forget we have Autism Awareness Month coming up (April) and World Autism Awareness Day (April 2). Show your support for a better understanding of Autism!!







Sunday, March 6, 2016

Communication and Hope

I saw a post on Facebook about a 16 year old boy that has autism, is non-verbal and his autism was considered severe. You can find the article here:

http://www.nbclosangeles.com/news/local/Autistic-Teen-Writes-Book-on-an-iPad--204775591.html


He now communicates very well with his iPad, is mainstreaming in school and is even on the honor roll. The article really had my full attention when I read that at seven his mother realized he could spell. I knew Lucas could spell when he was around 4-5 years old.

This is the part of the article that really got to me:

"“I talk in my mind, but my mind doesn’t talk to my mouth. It’s frustrating, even though I can communicate by pointing now. Before I could, it was like a solitary confinement. It was terrible having experts talk to each other about me, and to hear them be wrong in their observations and interpretations, but to not be capable of telling them.”

Boog is a very happy boy 95% of the time. I admit we probably talk about things around him that you shouldn't speak about around a six year old. But autism is the only parenting I know and it's hard to think that while he's on the other side of the room, looking completely engrossed in his iPad, that he may be hearing and understanding every word that's being spoken. 

I have no way of knowing how much he understands. I hope one day he will be able to tell me. 

Speaking of hope, this article gives me more hope than other similar stories because it states he was non-verbal and severe on the spectrum. The school district placed Boog in between mild and moderate. Dear Lord, does that mean one day I will be able to have a conversation with my only child? Will he be able to type to me his feelings, wants, needs? I admit that it's hard to have faith that this will happen one day.  I should have more faith because he is doing so much at school. He's coloring now without any assistance. His teacher has proven he knows a lot of things like the days of the week, names of colors, shapes, nouns and more. 

So why can't I just be confident that he will communicate with me one day on that level? Because in my analytical mind I unfortunately believe the quote, "hope breeds eternal misery". That doesn't mean I don't believe in my son. It means I have to keep my heart very guarded to function. I have to be realistic to survive this. I feel safer if I prepare for the worst. That way I'm safe if it is the worst and nicely surprised if it's not. That's not the way people (doctors, therapists, etc.) advise you to think, but they're not raising a child with Autism either. 

So, yes I will try and have hope. I know Boog believes in me without a doubt. I know he works so hard every day at things other kids can do with no effort. I know he's learning more and more. I know we will get there.

-Boog's Mommy

**Edit: I should have mentioned that Boog is doing very well with an augmentative communication app on the iPad. He's showing me requests on it that I had no idea he knew. That's why Ido gives me so much hope. I want Boog to keep going (and teach me on the way!). I hope people that still think these devices impair speech will realize not only does this technology promote speech, but they give non-verbal people a way to express things they have no other way to express. This eliminates so much frustration for them and they deserve that. They deserve to be heard no matter what way it is communicated.