Friday, February 27, 2009

Building On Our Children's Strengths

I read a post at The Rocking Pony which had a link to this great video called Animal School. It felt like a gentle reminder that I need to keep trusting my mother's intuition.

Mini Me is getting a little help in math from her principal. But, I decided to let her focus on what she loves at home. I took her to the library to get some books and bought a book we can both read while I was at Target this week. I was honest with the principal. I told him my one on one time with her is precious and I'm not going to spend it doing math facts. I thanked him for understanding my job as her mom and our needs as a family.

Then, she devoured the library books. I bought her an American Girl book at Barnes & Noble this weekend (yes, I need help with my book addiction) and she made quick work of that one, too. The other book I bought was the young reader's version of Three Cups of Tea. I was looking for a book for myself, but thought this would be a better purchase. Less money and we can both read it. It also has pictures and maps that aren't in the adult version.

Here's a picture from about 5 years ago! She'll be 10 this week so I'm allowed to reminisce.

Thursday, February 26, 2009


I talked to Goldie's PT about her walk. I thought I noticed her walking more on the insides of her feet. She said she had noticed her "turning in" a little bit. I told her I'm open to suggestions. So next time we see her we are going to talk about getting Goldie something more supportive than the shoes she has now. I still have her in soft soled shoes. But I always let my kids go barefoot, so I'm not sure what we'll end up with. I still feel like there are so many little things (and big) to learn about with DS.

I know this is silly, but it bothers me. It's just another reminder that things are different. And then a family member stopped by with some "stuff" yesterday. One thing was a pair of socks for Goldie. They were marked ages 3-5 years on the bottom. I commented that Goldie has always had big feet. So, this family member starts telling me no, she doesn't. Then compares them to my niece's and goes on about how my niece is running and Goldie isn't. WTH? My niece is 2 months older than Goldie and has always worn shoes about 2 sizes smaller. And oh yeah, she doesn't have Down syndrome! Now, her cousin's feet may have caught up, but for a kids with DS, Goldie still has some good sized feet. Maybe I should invite this person next time we go to Target and let her chase Goldie around the store. he he he.

Edit: Here they are while she sleeps sideways in the recliner.

Wednesday, February 25, 2009


After many wrestling matches with Goldie and her toothbrush. I finally surrendered. She wins. I put the toothpaste on the brush, hand it over and let Goldie do her thing. When she's done I manage to do a tiny bit of brushing. So, lets hope the xylitol does its job.

I don't have any pics of the inside of her mouth, but let me tell ya, she has a ton of teeth. Her last two year molar and two eye teeth have broken through and are taking their good ole time coming in. I was hoping she would get her teeth later, allowing a little more time for her mouth to grow. But, she's followed the same pattern as her sisters. (who are both being monitored by an orthodontist, sigh.)

Getting the brush wet


More slurping


I still don't know if my blog is letting anyone comment. Then I noticed that the sidebar isn't updating with new blog posts.

And I think I have strep throat. I have a Dr appt for later.

Monday, February 23, 2009

The "R" Word

I was hanging out with the girls tonight when Mini Me told me about something that happened at school today. One of the girls was "teaching" the other kids how to hit themselves in the chest with their hand while saying retard. I don't think I've seen that move since I was in grade school. I explained why it was wrong and got online with her to show her the shirts Lisa at Finnian's Journey and her son made. But, I was pleasantly surprised to find Lisa's recent post.

Just like Lisa, I'm shocked at the girl who initiated this. You see, her parents are leaders at the Vacation Bible School my girls attend every summer. When I pick them up, her dad is always up there singing with the kids. On the other hand, Hank only goes to church at Christmas and Easter. He's also a truck driver and has a mouth like one. Sorry, but its true, as the daughter of a sailor this didn't phase me when I met him. The irony of this is not lost on me. Now, I also know as a parent sometimes our children do things that do not reflect our values. My children have come home and told me some awful things that were said by their grandparents. I'm just glad they knew what they were hearing is wrong and not to repeat it.

Oh, and if you want to read more posts about the "R" word Joyce had something to say, too.

I'm hoping Mini Me will be inspired by Lisa's blog and stand up to the kids at school. But, I don't think it will happen tomorrow. She still feels like "the new kid" and is pretty shy. I'm wondering if I talked to the guidance counselor if she has a lesson that would be appropriate for this situation. I don't want to see kids get in trouble, I want them to learn why using the "R" word is wrong. I want them to know the people they are hurting and be able to empathize with them. I have a chance to volunteer at the school next month. Maybe it wouldn't be a bad idea to go and bring Goldie with me.

Thursday, February 19, 2009

IQ Tests Suck

I had a meeting with Mini Me's teachers, principal and school psychologist. I was given the scores from her IQ test. It was suprising. I expected her to do better on one portion than the other given her struggles with math and following directions. But, her scores were very similar. So, according to their numbers, she should have difficulties with language arts, reading, spelling etc...

I just can't reconcile that information with the daughter I KNOW. Language has always been her thing. She loves to read at home and excels in reading, grammer, vocabulary and spelling at school. My only guess is that her lack of skills in the direction following department is impacting her test score.

The principal was very positive and genuinely wants to help. He reminded me that there are multiple types of intelligence and this test only measures 2 of them. He will be working with Mini Me himself on some math concepts, since they don't have the staff available at the right time of day.

This was one of those times that I was so thankful for having a child with DS. I know from Goldie's evaluations that how a child performs on one day, at one moment in time, is NO indicator of their true potential or how they will perform 6 months from now. (I told them this) And if those numbers are right, then I guess it shows how far children can go with loving, involved parents who expect the best.

Sunday, February 15, 2009


Occasionally, I get surveys from our EI agency or the county. I always write in the comments section that I would like them to sponsor a playgroup. My mom ran a playgroup at our church when Mini Me and Swatcho were younger. She had an art center, water or rice table, housekeeping area, puzzles, circle time and snack time. It was fabulous. She has since moved on and I haven't found anything comparable.

Then in October Goldie's Service Coordinator gives me a call to say that she has been invited to join a playgroup once a month. She thought I would have already heard since the agency my mom is working for is organizing the playgroup. So, I called Mom to get the scoop. She tells me that the playgroup is for Early Head Start families and the county asked them to allow 5 families from EI to participate. Not everyone wanted to collaborate with EI, but Mom told them they would do it as long as Goldie was one of the 5 kids. So here's how it went:

Week One: Circle time, free play with toys, craft, more free play in gym area, eat lunch, read a story

Week Two: Circle time, free play with toys while listening to immature mother brag about how advanced her 5 month old is because he can pull to stand and crawl, play with balls in gym, eat lunch, read a story

Week Three: Kids have free play while parents learn how to plan a meal, eat lunch, read a story

But, I was really looking forward to the one on one time with my Goldie Girl.

The Good:
~ Goldie played with some toys we don't have a lot of, like cars. She even imitated the boys crawling and pushing the cars, which is something we've been working on in PT.

~ It was great to see how much progress Goldie made from month to month

~ Lunch was free and they were very accommodating of our food allergy

~ This month Goldie had a blast running around the gym (I skipped the story and let her run loose, setting a bad example for all the other parents and children)

~ One week, she ate off of a paper plate and even tried to use utensils

~ I got to play with my baby and just my baby :)

The Not So Good:

~ Immature mothers. They were just annoying. Even when I was a young, new mom, I never was a baby bragger. People can see my kids, I don't need to point out that they are walking or talking. Those things are kind of obvious and don't define my self worth. I decided I would go in with blinder on, ignore them and just focus on being with Goldie.

~ Hank has to watch Swatcho because she isn't allowed to come. It is also in the morning and sometimes Swatcho ends up not doing school that day because we also have PT that afternoon.

~ I'm the only mom who went consistently and I think the only one whose child has a diagnosis. I think the other EI kids just have delays because I couldn't tell who they were. I wonder if they would have chosen Goldie if her grandma hadn't made them?

~ Its really just a government sponsored parenting class disguised as a play group. Reading a book, planning a meal...Don't. waste. my. time. Goldie's book collection rivals that of our public library and I don't care what they say the breading on chicken nuggets is not a substitute for potatoes! I want her to have experiences I don't always provide at home, like the gym, water table, circle time, and crafts.

I called the Service Coordinator the next day to say we wouldn't be back. Then I signed up for Family Kindermusik through Swatcho's school.

What has Goldie been up to?

Her new thing is to pretend she's holding a camera and saying "jeeze" when I try to take a picture of her. She will also walk around with my camera in front of her while she repeats jeeze, jeeze, jeeze.

Hiding from therapists

and learning to blow her nose.

Friday, February 13, 2009


Thanks so much for all the support after my last post. I have a meeting next week at Mini Me's school. I can't help but think this is life's way of preparing me for the road ahead.

I can't believe its midnight. Slacker Mom has nothing for V-day for anyone in this house. Ugh. Last year I made the kids "love bucks", homemade coupons they could redeem for things like an extra bed time story, playing a game, a foot rub, etc... Looks like I better get crackin.

Monday, February 9, 2009

More On My Mind

I hope I don't look like a "labeler" after that last post. It's really not my thing. I also don't mean to minimize Goldie's Down syndrome in any way either. Its just their mom I worry about all of them. Mini Me's math struggles are on my mind just as much as Goldie's learning to drink from a cup. kwim?

This is Mini Me's first year in public school and up until now I've placed a lot of blame on myself. For the first time, I've been able to step back and see that I've done so much with her and maybe there is something else going on. I went to the school to ask for extra help for her and was told they already have an aide in the room. She helps all the kids. It wasn't until I suggested my child could have a learning disability did they offer to do anything. Do I think she needs an IEP? Probably not. But, unless I'm willing to speak the Special Needs language, she isn't going to get the help she needs. After talking to the principal for 2 hours (!) he tells me "parents don't usually ask for help for their child" She still hasn't mastered concepts that wre introduced at the end of 2nd grade and she's half way thru 4th! How far behind were they waiting for her to get? This is the only subject she needs support in, so it looks to them like she's just slacking. But I see the tears of frustration at home.

Before Goldie, I don't know if I would have sought help from the school. I would have been too proud. But now that I have a child whose diagnosis includes mental retardation, I don't care what people think.

Aaah. Its nice to get all of that out.

Now, why its really bothering me...

I keep thinking about inclusion. If they can't meet a "typical" child's needs, what will they have to offer Goldie? The Special Needs classroom is at a school on the other side of town and the Autism class is also at another building. I may be new to all of this, but I don't think inclusion means having a seperate class in your district. Then there was the comment to me by one of Mini Me's teacher suggesting that she just doesn't think my daughter is very smart. I wanted to puke. Where did she get that idea? Please tell me its because of the math anxiety and not because she has a sibling with DS. Will I fight for inclusion for Goldie so she can have this woman as a teacher?

I shouldn't even be thinking this far ahead. I have to trust that it will all work out. I'll have the wisdom when the time comes to decide what is best for Goldie.

Now, when I'm not bitching about my kid's school, I'm actually doing things with her. This weekend we made a 3-D version of the North Eastern states to help her learn the landmarks. Mini Me reports that the teacher was way impressed :)

Sunday, February 8, 2009

Special Needs Family

Technically speaking Goldie is the first and only member of my immediate family diagnosed with a syndrome that puts her in the special needs category. Since she was born, I've thought to myself MANY times that we all have special needs. Spending time with a variety of therapists who let me pick their brains has confirmed this.

Lets start with Hank and Swatcho. I'm convinced they both have ADHD. I'm sure its genetic because his mom and grandfather exhibit the same traits.(If you know anyone doing a study give us a call) Hank is physically unable to sit still. I have no idea how he made it through school. He says he paid people to do his homework so he could work after school. Then,there are the times he goes completely overboard. For example, he went to buy seeds for our garden last year. We only needed some pumpkin and green pepper seeds. He spent $80! WTH? I was only able to talk him into returning $40 worth. I only send him to the store as a last resort now.

Swatcho has been on the move as long as I can remember. Or not, because I don't actually remember her first steps. They were early and it was just the beginning of many trips to the ER. Broken leg 18 months, split chin 2yrs, stitches in big toe at 2 1/2yrs, and broken arm when she was 5. The arm was fun. She had to go to PT twice a week and we had therapists coming to the house for Goldie.I freak out now anytime she does anything remotely dangerous looking. Swatcho is also my sensory seeking child. She loves jumping, spinning, swinging, bike riding, etc...

So for a while I thought Mini Me was the "typical" one. But, alas, no such luck. I'll spare you all the details today, but let's just say she can't follow directions. I've tried everything. I realized it was a problem when I saw it impacting her school work. She knows the material, but can't remember the steps to complete a problem or answer a test question. One of her teachers has developed a low perception of her because of this. (thats a whole nuther post)

Hank came home today and said he thinks I should look into Executive Function Disorder. Yup, that's my girl. And she probably got it from me. But, when we were kids expectations were lower. I didn't have the amount of stuff to keep track of that she does, and I mean both toys and school work. I can also see why I have always kept our schedule so open. Too many things on the calendar and I get overwhelmed. There are weeks I think the whole therapist thing is going to put me over the edge. I'm thankful for them, but at the same time just want to be done with it already.

So there it is. Now, how do I organize our home lives so everyone's needs are met? Do I pursue a formal diasnosis for any of this or just implement strategies to help them be successful? I've started by boxing up some of Mini Me's toys and 2 bags of clothes. She had the idea that she could trade items so she doesn't have too much stuff out at once. I also do this with Goldie's toys to cut down on the mess.

Tuesday, February 3, 2009


The number of ounces Goldie drank from a cup today! Finally! See, while Goldie can eat pretty much anything, she has a tough time managing liquids in her mouth. We've tried straws, open cups, water bottles, and sippies. She can get the water in, but it streams (or spurts)back out or her eyes get big, she sputters and chokes. I think because of this she became a very reluctant drinker. Who wants to feel like they're drowning? Up until recently I wasn't too worried about it because she nurses so much. But, now it means she nurses sooo much. The mim mims were her main source of liquids.

Then, this evening, I put a little too much salt on the popcorn and she guzzled 3 ounces of blueberry tea. (The PT laughed when I told her that's what I put in her cup. Seriously though, I make it myself so its cheap, has less sugar than juice and more flavor than plain water.) Her cup of choice is an Avent sippy with the soft spout. Once she is drinking consistently we can work on the straw thing. Goldie has also been signing drink and making the k sound.

And for dinner tonight, we had curried chicken. I thought it was a tad spicy (my tounge is delicate) but Goldie likes her food with flavor! That, she gets from her Dad. He's never met a hot sauce he couldn't handle. I can see them eating hot wings together some day.

Monday, February 2, 2009

Good Things

~ The Steelers won the Super Bowl! What teamwork and determination, definitely worth letting the kids stay up late for. I love how you can never count them out, no matter how few seconds are left on the clock.

~ Goldie is moving from the highchair to the table. See, everyday when Hank gets home from work, after Goldie gives him his hugs and kisses, she goes to the kid's cupboard, gets out a plate and sets it at the table. Sometimes this is followed by a bowl or cup. Then she pulls out the chair and stares at me.
I brought my yellow seamstress' tape measure to Target and found a booster seat with a belt that would fit under the table without smooshing her chubby thighs. The other 3 booster seats we already own, were too high and she kept sliding off the phone book. Now, time to learn this girl some table manners.

~ Hank's job. This is a big one for us. As the economy is tanking, we are rising from the abyss. My part time job was eliminated when Goldie was born and Hank was laid off when she was 8 weeks old. We applied for both SSI and unemployment. But, here's the sweet part, SSI only counts half of your wages, but ALL of the unemployment. So, they decided we should pay back 3 months worth of Goldie's SSI money. Nothing like kicking somebody when their down. Hank tried to hang on to his job at his old employer for way too long. They were letting us keep our health insurance, which is no small thing, because the state was paying for a portion of it and they were only 3 miles from our house.

Fast forward to this fall, I get tired of Hank drinking beer and playing with tractors strike oil by finding him a new J O B. He is now driving for a stable company that treats him almost as good as I do. A peace comes over me when I look at his pay stub and see money going toward health insurance, retirement, and even an account to help cover medical expenses. Plus, his new company has decided not to keep the money the state gives them to pay for Goldie's portion of our health insurance. They are having the state send the check directly to us. Can you believe that? Their belief is that will pay for our family what they would pay for any employee's family and give us the money to help for our portion. That's integrity. And the best part, Hank likes his new job, he has his pride back and is generally much nicer to be around.

~ I have a legitimate reason for not cleaning my kitchen floor and letting my kids run barefoot. It seems dirt really is good for the immune system. But, I'm going to have to draw the line at becoming infested with WORMS. Maybe Swatcho really does have a tapeworm? She's got a bullet proof immune system and despite how much food she packs away has wrists the size of a two year old. Hmmm.