Tag Archives: special needs

Activities of Daily Living with a child with FASD

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As any parent knows, parenting is not an easy job. As any parent of a child with special needs knows, it’s never easy.

As parents our days are filled with shouts down the hallway to “get dressed, your bus is coming”, deciding what to make for breakfast and lunch, getting each kid out the door on time, trying to get yourself a shower, cleaning up the house, doing the laundry, planning for dinner, organizing the calendar, getting the kids off the bus, getting the homework completed, sports, etc…etc…etc…

These can be exhausting in and of itself. Now let’s look at that day through the eyes of a parent of children with special needs.

Our days are filled with shouts down the hallway to “get dressed, your bus is coming” then realizing that if you don’t make eye contact with your child, they hear NOTHING. Deciding what to make for breakfast and lunch can be a bit easier because many of these kids crave routine and that oftentimes includes eating the same thing over and over again. Getting the kids out the door on time can be a challenge because, if you’re like my family, we have kids in different schools. This means busses coming at different times. You miss one, and it throws everything off.

Now for the shower. Oh, the shower…a place where we can be alone and just let warm water flow over us. You reach for your new aromatherapy shampoo that you splurged on to treat yourself only to find it….EMPTY? I haven’t even used it yet! How can it be gone? You then remember that your child took a shower last night and in the few minutes you left your child unattended so you could answer the phone, they felt the need to clean the shower walls and bathtub…with your expensive shampoo. It’s also a great surprise when they use your lavender-scented vaginal wash as shampoo because they had dumped their dollar store shampoo down the drain to see the bubbles come up. There’s something to be said for having a house with a private master bath. I think I’ll put that on my list of things I can hope for one day.

You get out of the shower and dry your squeaky clean hair on the towel (and I’m serious about the squeak because I had to use a bar of soap to clean my hair since there was no shampoo). You arm yourself with cleaning supplies, vacuum, garbage bag and a dust rag and set off to clean the house. Unfortunately it’s not just dust bunnies you find under the couch. Oh, look, there’s my ring that I’ve been looking for that disappeared from my jewelry box. Great! It’s right next to a yogurt container that still has the spoon in it and is spilling over with ants crawling all around. I must have forgotten at some point to put the lock back on the refrigerator door before going to bed. Note to self: stop doing that! You finish cleaning and start to inventory your booty: candy wrappers, spit out peanut butter and jelly sandwich, string cheese, gogurt, a once frozen pizza thrown behind the couch in the basement once she realized they don’t taste all that great uncooked, 4 juice boxes and something you still can’t figure out what it used to be. All this in a couple of weeks since you last pulled out all the furniture. Wow, she’s good at sneaking things behind my back.

Laundry. Ugh, laundry. A thankless task for any mother. It’s the never ending household chore that I dread the most. I just love it when I find clothes in the hamper still on the hangers because she couldn’t decide what to wear and it just made more sense (to her) to toss it in the hamper than hang it back up. And then there’s the stench of stale urine and other unmentionables because hygiene is something that is just not that important to some kids with special needs.  A cup of vinegar added to the wash helps with this. In this house, I buy 5 gallons at a time. Seriously.

Organizing the calendar is a daunting task for any household with kids. Who needs to be where and when? What nights do you need to start thinking about dinner while scarfing down your breakfast? Which school projects are due this week and what else can we skip in order to get that done? Who has football practice? Who has a playdate? Yadda. Yadda. Yadda. In my house, we have all that but we also have counseling appointments, social skills groups, chiropractic visits and doctor visits. If I’m feeling overwhelmed by the looks of our filled calendar, I can’t imagine how the kids feel!

The alarm on my phone signals the “10 minute warning” that the busses are coming, the busses are coming! Which kid is coming home today? Is it happy Alli? Frustrated Alli? Tired Alli? Sad Alli? The suspense is killing me! Seriously, it’s killing me because I must have any number of “mommy faces” ready to handle whichever one comes off the bus. (By the way, I also feel this way in the morning before she wakes up. We can see several of Allison’s “faces” in any given day.)

Homework time. YAY! NOT! The calendar says we only have 1 hour to devote to homework tonight and there are two kids who need help. There’s a family in Minnesota or Montana (I know it’s somewhere in the Northern Midwest) that has 13 kids with FASD! Holy crap! I can’t imagine homework time in that house. I have trouble handling one (plus another child who is struggling with school)! Hats off and kudos to you Hays Family. I couldn’t do it. There’s just not enough time in the afternoon before bed to get it all done.

So, I’m not saying that families with neurotypical children do not have their challenges. I’m also not complaining (I chose to adopt these amazing kids and I vow to raise them with every ounce of strength I have in me). However, if you know a family that has children with special needs, give them an extra pat on the back to encourage them. Most parents of these kids won’t ask for help. They’ll just “do it all.” If you are a parent of a special needs kid, give yourself a break. Accept the help being offered and get an hour to yourself. Find a babysitter you can trust and go to dinner with your spouse. You NEED it!

Hmmmm, which one would I like to be today? The kettle or the pot? I should take some of my own advice sometimes! Teehee. Whoops!

Hang in there everyone! Cherish these days. They’ll be gone before we know it!

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A Little Perspective

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The other day I was driving in the car by myself and listening to K-LOVE radio (96.7 for those in the NYC area). I think a lot. Sometimes I do this too much. This particular day I was thinking about my sweet Alli. It wasn’t long after my “mommy meltdown” mentioned in an earlier post. I was still questioning God on His decision to trust me with Alli and Nate. I was still wondering why He chose me when he knew I would screw up as often as I do. I was thinking back to my days before children and how I longed to be a mom. I remember dreaming about one day having a daughter and a son. I started crying…again…because I felt like I was, for lack of a better term, mourning the loss of the daughter that I thought I would have. No woman dreams of having/adopting a child with special needs. Don’t get me wrong, I knew that I would love whatever child was brought into my life. However, we can never anticipate the challenges that lie ahead for us. I see my friends who have daughters the same age as my Alli and their relationship is very different from the one I have with my daughter. Confession time….sometimes I feel jealous. This day, driving in my car alone, was one of those days. I began to “mourn” the loss of my vision of who I thought my daughter would be.  Before I could get too deep into this, God grabbed ahold of me and almost literally shook me out of my funk.

I had arrived at my destination, found a parking spot and was about to turn off the car. I had the radio on in the background but was absent-mindedly listening. A woman had just called in and asked if the radio station would take a prayer request. For some reason, I stopped myself from turning off the car to hear what it was. There was something in her voice. A softness and sense of peace that I so rarely hear. Her prayer request was short and sweet. Her six-week old son was just diagnosed with cancer. She asked for peace and understanding because she didn’t know how long they had left with him. Needless to say, I sat there and cried. The radio personalities stopped right then and there and prayed for this new mom and her husband. They prayed that this little boy would be miraculously healed. They prayed that God would reveal to them His plan and how, even should this baby return to God so soon, He would bring joy out of it someday.

I prayed with them and then I prayed for forgiveness. In my focus on what I felt I had lost by adopting a daughter with special needs I had overlooked the most important part. I still have a daughter to hug and to hold. I have a daughter who writes me notes all the time just to tell me how much she loves me. I have a daughter who is creative and funny and makes me laugh all the time. I have a daughter who is beautiful and loving. These parents may never hear their son speak a word. These parents may never feel their son’s embrace. I have all these things. How could I be so self-absorbed.

I sat there in my car for over ten minutes sobbing with my shoulders shaking. I had just experienced one of the many reasons their son was going through this battle at such a young age. A little perspective is all I needed to fully embrace my children for who they are…special needs and all.

Fetal Alcohol Syndrome IMPORTANT FOR ALL WOMEN and the men who love them

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I was going through my facebook notes and came across a few things that I wrote years ago. This one was written the year our daughter was diagnosed with Fetal Alcohol Spectrum Disorder. Just thought I would share with you all. I have a few more that I’ll post in the near future. For now, help me get the word out there!
Fetal Alcohol Syndrome IMPORTANT FOR ALL WOMEN and the men who love them
by Heather VW Friday, November 12, 2010 at 1:36pm ·

I just finished reading a couple books about Fetal Alcohol Syndrome and am astonished by how prevalent this is. As many of you know, our daughter, Allison, was diagnosed with FAS. We suspected this for a long time and am relieved that we finally have an explanation for some of her bizarre behaviors and difficulty with school and social situations. Fetal Alcohol Syndrome is an invisible disease that gets too often overlooked.

The biggest shock that I read was that even ONE NIGHT drinking while pregnant can cause FAS! ONE NIGHT!!!!!! In some cases it is ONE DRINK!!!!! It has nothing to do with what type of alcohol or how quickly you metabolize it. What matters is that the baby cannot metabolize it. Fetal Alcohol Syndrome is caused by PERMANENT BRAIN DAMAGE. This is irreversible. THey will struggle with this for the rest of their lives. Parents of these children will struggle with parenting them the rest of their lives.

This is a 100% PREVENTABLE condition. If you are pregnant, know someone who is pregnant or plan on becoming pregnant…DON’T DRINK!!! No amount of alcohol is safe for your baby. No matter what your doctor tells you!!! Seriously, there are still text books out there teaching future doctors that it’s okay “once in awhile”! THere is legislation to get this changed.

I love Allison with all my heart and I strongly believe that God brought her into our lives so that we can raise her the way she needs to be raised. HOwever, every day is a struggle with her. Every day we don’t know who Allison is going to be. Deep down we know who she is but her struggles define the way the day is going to go. Don’t risk your child’s future for a drink. Wait and you will be rewarded with a child who is healthy and whole!

If you are a mother and you drank during your pregnancy, don’t be too hard on yourself. You were most likely given misinformation! If your child is struggling with academics, making friends, odd behaviors, etc…. get help! It will be hard at first to admit that you had something to do with the way your child is, but in the end you will find peace and understanding as you learn the techniques for raising a child with FAS.

If you have any questions, please feel free to call me. I’m no expert but I’m learning all I can to help our dear Allison live a life that can be productive and enjoyable. Her future depends on us and I am going to do my best not to let her down.

Thanks for listening….please help spread the word about this. This is only a 10th of what I wanted to write but I just can’t get my thoughts in order today. Maybe another day! Feel free to copy this in it’s entirety and share with others. Women need to know that NO AMOUNT OF ALCOHOL IS SAFE DURING PREGNANCY!!!!!

Here is a website as well with tons of information.

http://www.nofas.org/

Allison looking cute in Rockefeller Center. She loves the City!