Yep, it's the week of Friday the 13th

Happy Veterans Day!

After a long absence from Ivey's tough seizures, they returned last night.  She spent the evening in the ER.  She is home now - we side stepped a trip to Scottish Rite.  All tests were ran and no 'illness' was found, which we were hoping to find.  Break through seizures like this are sometimes an indicator that something else is wrong.  Seems she just seized - no matter how common they are for us, they still take your breath away watching that little body of hers. 

Thank you ER crew.  You all are great and we appreciate you so much.  You guys rock when it comes to sticking Ivey.  Thank you ER doc for feeling comfortable enough with us to not transport her on to Atlanta. 

Ivey was at Aunt B. and Uncle W.'s house yesterday when she began seizing.  Luckily Matt was already there to pick her up and take her home.  So Matt and Aunt Beth got her to the hospital quickly.  She is always in good hands with Aunt B and Uncle W.

I was in Cartersville coming back from Atlanta - my dad had surgery yesterday - when Matt called to tell me that they had her in the ER.  Please remember that someone driving with flashing lights normally indicates urgency - move to the right hand lane. 

I think we might hide under a rock this Friday.  Friday the 13th. 

Thank you VETERANS!  I love my country; thank you for protecting our freedom.
Thank you Dad - specifically. 

Gavin Owens

Another Angel received his wings.  Godspeed. 

Something to think about

Recently on my MAPS board we had an interesting article that stirred up much debate and discussion amongst our members. The article followed within days of our families little trip to Krispy Kreme. It seems a nerve was struck amongst the members of our group, a wide range of emotions about the article were discussed. It made each and every one of us in MAPS take a step back and take a look at how we actually view ourselves and how we have, and continue, to deal with raising a disabled child. I am posting a link to the article for you all to read, especially if you are a parent raising a child with a disability, or special needs, or if you are in the special needs field – this article is worth your time.

http://www.cdlsusa.org/publications/the-impact-of-childhood-disability.html

I do not agree with the entire article, but yes, there are portions of it that hit home. In our MAPS group a couple of interesting angles emerged. The author did his best to evaluate a very complex situation. I'll let you decide for yourself how you feel about it. I am most certain your angle will originate from your experiences with a special needs child.

I have really had to sit back on my heels and think things through. I had a pretty interesting comment on our Krispy Kreme post that really brought this full circle for me. It was a great comment. A mom offered her support, but also stated her opinion from not having a special needs child, which is wonderful. I would equate her very much to the 'Mother at the Swings' article. You can read that too, just click on it. If you haven't read it, it is worth a couple of your minutes! Mothers at the Swings are awesome people!!!! On the flipside, I received an email from a friend who does have a special needs child who read the article in a totally different light. Interesting too. I love that about Ivey's blog. The mom with the special needs child read our experience exactly how I saw it……thus the disputed MAPS article is much the same.

Let me explain the experience at Krispy Kreme a little differently.

Ivey's life is much different than that of my 'typically' developing boys. Every day that I drive Ivey to a different school, past their school, I am reminded of that. However, I wouldn't trade Ivey's route to school for anything in this world. For us, and for our friends who are also raising children with unique needs, it is not about the sports, dance classes, cheerleading or any of the like. Not in the sense that it might come across. We do not want those things for our children because it is some ideal we had of them before they were born. The well rounded perfect child. Not at all. It goes much much deeper than that.

It is about the relationships. No matter what Ivey enjoys, her ability to build relationships to make her own friends will be very challenging. Our kids play sports or join clubs primarily to have a social group, friends.  My desire for her is not the activity and her capability to execute the perfect toe touch– it is her ability to create bonds. Ivey is a very social child. She loves people. But her ability to reach out and make a friend in her own peer group is very different than a typical person. We are surrounding her with people who are extraordinary, teaching their children to sign, learning themselves, coming here to learn how to communicate with Ivey. None the less, I want Ivey to make her own friends, pick out the people she want to surround herself with, get to know them, feel their friendship.

No matter what we do from our end, it will always be challenging for Ivey. Right now Ivey is nonverbal, there is no way for us to know if or how verbal she will ever be. And for Ivey, it will run deeper than words alone.  That is why we really push to have everyone we know to learn sign language. That is why we try to 'teach' everyone how to interact with a deafblind individual and feel comfortable in doing so. If she does not develop her verbal communication skills, will there be children her age that are capable of befriending Ivey? If she is invited to a party or over to someone's home, will they be able to communicate with Ivey? So right now even though Ivey is social in her own way, communication with Ivey is limited - Ivey is a very inward focused child.

So Krispy Kreme wasn't about her doing these things that I envisioned her doing. It was about a fundamental need that everyone, no matter who you are, desires. Friendship. How will Ivey cultivate her own friendships? She will, for the most part as years go on, be surrounded in school by children who are also mentally challenged. Will they be able to form those bonds with her? I see the big brick wall even from here. Ivey will always require certain prompts and cues for her to even know that someone is in the room with her. Do you see the challenges that Ivey faces?

Next time you see a person who is in your peer group who is mentally challenged, physically challenged or both, will you be able to look past those obstacles and befriend them without barriers? If you are at a party over the holidays and meet a special needs person, how will you make small talk? Or, how often are mentally challenged individuals invited to the 'typical' parties. Or, will you feel the overwhelming need to treat them special? Everyone needs friendship. Maybe others do try to befriend Ivey, but will she be mentally capable of reciprocating that friendship? Most parents want their children to be well liked. Ivey will be loved beyond belief, but how will it work with everyday friendship? It is so complicated…to complicated the majority of the time.

At Krispy Kreme, we saw the friends, not the party.  We don't sit around here muddling over it, but there are moments that it washes over us…we see our family in fast forward…..and always it is in the most unexpected places.

Just giving some food for thought. Read the articles and let me know what you think. I just want to say a special thank you to my blog friend who is my friend at the swings.

Gavin

Please continue to pray for Gavin's family as they await his final moments -

The Owen's Family

Girls Got Rhythm

You can pause the blog's music at the bottom of the page -

Gavin Owens

Please keep my friend Karen and her family - especially their Gavin - in your prayers now. I dare not try to tell their story, please visit their blog, read their story, and pray.

Gavin and Ivey are very close in age. Karen and I began keeping in contact not long after we settled in with our 'new' life with our special needs children. We have followed each other along this journey. Gavin is now taking a path that is heartbreaking. The fear of reality is never too far away.

Click here to visit their website:
Gavin Owens
The Owen's Family

Get on the band wagon -

Okay-

Here are all of the things that are in the works over here in Ivey Land. Help us out if you can, if not cheer us on. I count my blessings with her and love all of the things about her they may take a little extra time and effort.

Number one must: Introduce yourself to Ivey before you touch her. When introducing yourself, speak to her, tell her who you are, then touch her on the shoulder. When everyone is ready we will work on getting name signs and name cues for you!

Number two must: Let Ivey know when you leave her. Always tell her good-bye.

Now for new things in the works:

Ivey is practicing on keeping her head up. When you are around her ask her to hold her head up to look at you. If your hands are sanitized, J, please tap her under her chin as a prompt.

Ivey is also working very hard on pulling up. Encourage her to stand. Sign stand to her and ask if she would like to stand. Encourage her to pull up on objects not just using your hands.

Ivey has become very bored with lying down and sitting so much. She wants us to walk with her. So take her – put her on the floor – and ask her to walk. Hold her hands and walk with her. Tell her where she is, what is around her, and be prepared – you will move at a snail's pace. She will get excited. If she is not up for walking, she probably just wants to dance. So let her bounce.

Other than that – please learn a few words to sign with Ivey. Don't know what to sign? Pick an object, learn the sign for it and teach her. For example, chair, table, common animals that she is very likely to touch like dog or cat.

This past week Ivey had one of her moments that you see her brain click and the light bulb go off. She started pulling up to stand using the boys train table. She realized that she could stand up without my assistance. She is very stable. At this rate, I think she will be pulling up by Christmas….walking will not be far behind!

Help us out. Especially if the boys are around – we are out –numbered and Ivey needs as many opportunities as possible to practice.