Tag Archives: SNM

The year in review

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One of the most difficult things about being the parent of a special needs child is that progress isn’t linear. There are periods of time when Mattie seems to be improving in leaps and bounds, followed by months of seemingly static capabilities. This result’s in a constant emotional roller coaster: feelings of elation when things are going well; and downright depression when they aren’t. You see, as parents our efforts don’t change, they are constant and all encompassing. Jess and I have devoted the vast majority of our time, money and energy to improving Mattie’s prognosis, with the hope that one day, these efforts won’t be necessary. But it’s difficult. Time seems to exist in snapshots, from one therapy to the next. And sometimes I get so caught up in what we’re doing, that I forget why we’re doing it.

The end of the year provides a fantastic opportunity to look back at the year and attempt to put our efforts, as well as Mattie’s progress, into some perspective. In 2013, Mattie was able to attend:

96 ABM sessions
20 Occupational therapy sessions
21 Speech therapy sessions
27 Early intervention sessions
10 Gymboree group visits
17 Hippotherapy sessions
4 Craniosacral therapy sessions
1 MNRI session

Wow! When we added all of this up, we were astounded. The logistics of getting to all of these therapy sessions was no small feat, and included 4 out of state trips. Mattie also went out of state in October for SPML surgery to reduce the spasticity in her legs.

Cold Wind

Gym Time

2013 was a great year for Mattie. At the beginning of the year, her primary mode of transportation was rolling around. This past year Mattie first learned how to army crawl, then later developed her “frog-hop” (patent-pending). Mattie also learned to sit up on her own, albeit in ways you and I wouldn’t even think about attempting. Mattie’s biggest progress this past year came in her language and cognitive skills. A year ago, Mattie could only say a small handful of words. Now, Mattie is capable of talking to you in 4 -5 word sentences. The other day when I came home from work for lunch, she exclaimed to the nanny, “I want to play with my daddy!” It was the highlight of my week.

Just recently Mattie has started to develop her sense of humor. One of her favorite games occurs when Joba jumps on my back. The conversation goes like this:

Me: Mattie, is there something on my back??!!
Mattie: Yes.
Me: What is it?
Mattie: A monkey. (with a big smile on her face)
Me: What’s the monkey’s name?
Mattie: Joba! (Both kids laughing hysterically)

2013 was also a busy year for the Hope for Mattie charity. We held our first major fund raiser in April, the Hope for Mattie 5K and 1 Mile Fun Run. This event was a huge success, with over 200 runners coming out to show their support for our daughter. Later in the year we had our second fund raising event, the Hope for Mattie Charity Golf Tournament and Banquet Dinner. Over 100 people participated on a beautiful fall day. Between these two events we were able to raise over $11,500; all of which went directly to Mattie’s therapies! We are currently in the planning stages for the 2nd Annual Hope for Mattie 5k and 1 Mile Fun Run, to be held on April 12th, 2014. This year we are adding a bounce house for the kids and a cookout for all attendees. For more information about participating in this event, CLICK HERE! If you would like to volunteer to help or to become a sponsor, email us at runforhopetampa@yahoo.com.

2013 was a great year for Mattie and our family. It was hard work, but Mattie has really made amazing progress. All of this is possible because of the support and generosity of our friends and family. Thank you all for being a part of Team Mattie! – Jim

Mattie

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Noses and Glasses

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We have had a busy June and July. August is looking pretty full as well. Traveling for ABM is really taking a chunk of our free time. Since the last update in June (First Steps), we have done 10 ABM sessions with another 5 more on the schedule for July!

Mattie is starting to have better balance, she is using her hands to balance herself, she has added Na-Na-Na to her vocabulary, she is eating table food (yea no more pureed-pain-in-the-ass-food), she can grab food and feed herself (although she misses ½ the time), she officially knows where her nose and belly are and best of all, she is reaching up to be held (heart melting) and gives us “noses” (eskimo kisses). Although she still can’t sit on her own, I was able to take her grocery shopping for the first time this week using an actual shopping cart!! This should not be a big deal for most people, but it was to me. A few SNM suggested that I use sugar bags or water to keep her from falling over, but I decided to wing it and just have her hold on (for dear life) and for the most part she did really well  (she only fell over twice!!).

As we continue with ABM, PT, and OT, we are finding that even though she is behind, she is making slow and steady progress. All of our time and effort is really paying off and that is what gives me motivation to continue this crazy hectic schedule.

We were officially released from Mattie’s GI doctor. Yea!!!! Another ‘ologist crossed off our list! Mattie is back on the growth charts and at her 15 month checkup last week she weighs a whopping 19 pounds 14 ounces! She is in the 40% for height and 25% for weight. We are back to every 3 months with her pedi!

We saw Mattie’s neurologist this month. He thinks she is making progress and has pushed our appts to every 6 months rather than every 3 months. He had nothing new to tell us and we had nothing new for him. He is old school and some of the alternative therapies we are doing with Mattie he has never heard of. I have been thinking about switching neurologists, but he is one of the best in our area. I am not sure that a new doctor would really shed any light on Mattie and her PVL since all kids are different, so that is why we have not made the switch or even gotten a 2nd opinion.

One area that I have gotten 3 options on is her eyes and vision. We saw Mattie’s eye doctor this month and let’s just say that we are no longer just “waiting”. As you know her eyes will occasionally turn in. This does not happen all the time and most people may not even notice, which is why we have been holding off on surgery. We started patching again. This time it is her left eye. Dr. W thinks that her right eye is now the weaker eye (we were patching her right to fix her left) and Dr. W wants Mattie in GLASSES!!! I knew this was coming. We went home and took out the lenses of her sunglasses to see how she would do with wearing glasses since we were advised that if she would not leave them on then we should wait on the glasses. She immediately takes them off. I can’t even get a picture of her wearing them! So… I just bought an eye glass strap in hopes that she cant rip them off. I am waiting for that to come in the mail before we give up on this eye-dea 😉

Am I a special needs mom? I am a special needs mom.

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Back when Mattie was 4 months old, I overheard Jim calling Mattie “my special needs daughter”. WHAT?????? I was shocked, then sad, then in denial in all of 1 minute. That was the first time that anyone has said that aloud, let alone her father. My thought process went a little like this: Is that what people think? I don’t think that. I WONT say that! Am I the delusional one? Mattie is fine. She is not a “special needs” child.

At that point we were still not sure how Mattie’s PVL would affect her. It seems as the months passed and she was failing milestone after milestone, the “special needs” tag kept popping up. I eventually learned to say those words and accept it. I am not sure when that exact moment of acceptance occurred. I think it was always there. I was just not ready to admit it. I was still holding on to hope that everything was going to be ok.

We knew from the moment my water broke that Mattie’s life may not be easy. I had many days to think about it as I lied in my hospital bed. There were many long days and nights to think and pray and wonder and hope and accept. I am often asked how I can move forward after finding out my daughter had brain damage. The answer is not a simple one, as I have so many emotions, but I do know that I accepted the possibility of something going wrong long before Mattie was even born. Does that make it easier? Maybe in some ways it does. Some moms go through pregnancy with no complications only to find out after their baby is born that something is wrong, no warning given, not even a thought of something bad happening. These moms are not given a choice. We had a choice and we had time to accept our choice, no matter the outcome. I have no regrets; Mattie’s smile makes it all worth it, but will she? My biggest fear is that one day she regrets our decision. It is tough to even say that out loud and when I do it brings tears to my eyes. But I don’t want her to ever feel like she would rather not have lived then to be …disabled. So how do I teach her that???

A fellow SNM posted a blog just yesterday called “Mommy, will I walk when I am older?” OMG! I was crying reading this. This could be Mattie one day. What would we even say to her? How would we choose the right words to make sure she accepts herself for who she is and not become saddened by her limitations? I have a hard enough time coming up with a response when Joba tells me that one of the kids in his class does not want to be his friend… this is… just… mind boggling! I truly appreciate what this mom has to say about it. As I share and learn from other SNM, I continue to grow as a mom and I continue to gain the confidence I need to know how to handle moments like these.

This short essay goes around the special needs community quite often.

Welcome to Holland by Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Of course I went through periods of anger, sadness, pity, mourning for what could have been. I still have those emotions. I am not sure they will ever fully go away, but I also have periods of joy, happiness, and amazement. Raising a special needs child has changed my life. There is no more ”should be” in my life (she should be walking, she should be sitting). The “should be” has been replaced with patience, understanding, love, and compassion at the samllest things. Every little or big milestone Mattie accomplishes makes my heart burst with love and joy. Mattie is teaching me to slow down and take it one day at a time.

As all moms do, whether you are a “special needs mom” or a “normal mom” we still want to see our children grow up happy, healthy, self-reliant, and confident in themselves and their abilities and succeed in life. We want our children to feel loved and show love because in the end “all you need is love”.

I can only hope this for my beautiful daughter, Mattingly Hope.

In a text from Sarah last week, “rockin the 4 point”. This made my day! Thank you 🙂