Mother's Day Reality Check

Goldie is seldom is sick, so it is easy for me to slip into a mindset that we have beat the "low immunity" aspect of Down syndrome. And maybe she has, but what has yet to be conquered is the darn dysphagia. So, on Mother's day, I sung my baby girl through IV sticks (3) and breathing treatments while my would be dinner of pasture raised filet mignon and NY strip, still wrapped in white butcher paper, lay in a pool of red juice.
While Goldie may catch less than half of the bugs I do, her low fluid intake makes fighting what she does come down with very difficult. This is compounded by the increased difficulty in swallowing when her sinuses are draining. A cold was making its way through our house and I had been worried that she wasn't coughing as much as her siblings and that mucous was, instead, settling in her chest. Mother's intuition, trust it. When I got her to the ER Sunday morning her oxygen levels were in the low 80's! A chest x-ray showed that Goldie had pneumonia. The rest of the day included IVs, oxygen, breathing treatments, antibiotics, and an ambulance ride. Listening to some folksy kid's music on Pandora, we rounded out the afternoon snuggled up in the hospital bed for a nap.
Hank still needs me at night, so I left Goldie in the capable arms of her Daddy. Then, I drove home, crying and feeling torn between my children. Repeat all of this for night two and add in a couple middle of the night phone calls with Goldie SCREAMING in the background. While all of this really stunk, my husband mentioned how much closer he feels to his little girl and I have found even more trust in him as her father, advocate, and protector.
She is home. She is tired. A trip to the post office yesterday, yielded a three hour nap! As for the rest of us, Hank has a double ear infection, the nine year old woke up with the stomach flu, and my hubby worked over fourteen hours yesterday. (I'm thankful for that because it means he has a job and we need the money to cover visits to the hospital). My promise to him when he left earlier: I will not crack up, today.

Finding a Preschool

Well over a year ago, while I was pregnant with Hank we looked at some preschools for Goldie. I did this as part of the transition process when she turned 3. I didn't see a place that I loved, so we decided to utilize some community programs this year and revisit the preschool options when she was turning 4.

I began my search anew in February when I saw that a Montessori school was having an open house. It was nice, but it seemed like there would be a lot of rules for Goldie to remember and the room had a lot of furniture for her to navigate around. Goldie also learns best in an environment that is free of visual clutter. I spoke with the teacher and explained what Goldie's strengths and weaknesses were. I did not tell her my daughter has Down syndrome. In my experience, it brings up too many stereotypes.

The school's only tuition option was for 5 days a week, so I decided to keep looking. It would cost us a fortune in gas to make 10 trips a week! My next call was to my neighbor. Her kids went to a Montessori school that was 5 minutes away, but only advertises by word-of-mouth. She was happy to call the owner and talk to her about Goldie.

The owner, Miss M, has really exceeded all of my expectations. She has met Goldie one-on-one twice and has had me observe the classroom one morning by myself. Before I sat in on a class, she told me "I don't want you to get overwhelmed and think that Goldie can't do this, because she CAN." Miss M. has asked me to bring Goldie once a week for 1/2 just to get her used to the classroom and allow them to get to know her. I must have looked a little nervous because she assured me that Goldie will be going to school there as long is that is what I want. The plan right now is for Goldie to attend two mornings a week in the fall and maybe add a third day after the Christmas break.

A couple months ago I was asking myself, "Am I crazy to think that my child with Down syndrome can go to a typical preschool without an IEP and supports?". But, after seeing Goldie in the classroom and feeling the kindness of the students and teachers, I know Goldie will just blossom at school next year. She is already requesting "school" on a daily basis.

This is my first post using a blogging app. If it works out, I may be able to post more often than once a month!

Down Syndrome and ADHD: Our Diagnosis Story

If you would have told me 4 years ago that I would be medicating my child to treat ADHD I would have scoffed and presented you with a bottle of fish oil. Just one of many alternative treatments for attention deficit disorders. I have the Down syndrome to thank for keeping me humble and teaching me that I don't know as much as I'd like to think I do.

I'm sure other parents of children with Down syndrome wonder if their child's attention span is typical of a child with developmental delays or has it gone into the realm of ADD/ADHD. I'm not a medical expert, but I can tell you how we made that determination.

In September (Goldie was 3 1/2) I noticed that I was redirecting her towards acceptable activities every couple of minutes. In addition to the redirection and positive reinforcement, we also started explaining consequences and using time-outs. Goldie responded very well, but it illuminated the fact that the problem was not behavioral. Even when I was sitting on the floor playing with her, she wasn't able to stick with an activity for more than 2 minutes.

My next thought was that the problem was developmental. Was I expecting too much from her? Were her developmental delays responsible for her lack of focus? I did what all mothers do and began comparing her to my other children at that age. My oldest could sit and listen to me read all day at the age of two. Daughter number two couldn't sit through anything longer than a board book until she was 5 and would not watch t.v. until she was 4. Yet, she could still stay on task longer than Goldie. Which brings us to Hank. At 15 months he will sit and play with a toy for 3-10 minutes.

During this time I happened to be talking with a friend who has a daughter with DS that is a year older than Goldie. We both agreed that our children needed help choosing an activity, but in Goldie's case it would only keep her occupied for 2 minutes. Times like these are when I wish I was active in a real life DS support group so that I could have more exposure to other children.

For as long as I can remember, I kept telling myself, that when Goldie's vision and fine motor skills improved she would be able to sit and play. Her vision improved tremendously and she is able to do many things, but her ability to focus on an activity never improved. As she grows we see her making progress in so many areas. Attention has just not been one of them.

After implementing a list of alternative remedies as long as my arm and finding no relief I placed calls to Goldie's pediatrician, the Psychology department and the Down Syndrome Center at Pittsburgh Children's Hospital. The DS center was very helpful. One of the first things they asked was for Goldie's evaluation scores from her IEP. I know most of us don't like these evaluations, but I was glad to see that the scores were useful to ME for once. In most areas Goldie had a 25% or less delay. Except in Attention and Memory where she had a 50% delay.

The final step was having her therapists complete evaluation forms for the Down Syndrome Center. I recieved my own parent survey to fill out. The results? In her doctor's words "She is off the charts for ADHD. I am surprised she is as well behaved as she is. I expected her to be all over the place." (Thanks go to the iPad for keeping Goldie seated. She must have gone through 10 different apps in just as many minutes.) He pointed to the chart and showed me the range in which children with DS normally fall and the range in which Goldie was. We discussed treatment options and possible interactions between Goldie's supplements and medications. Later, I received a large packet in the mail on Down syndrome and ADHD.  What I've read so far has been both disturbing and helpful.

I'm sure your wondering how the things are going with the medication. While I worry tremendously about the long term consequences and side effects, right now things are much better. Goldie has not had any negative side effects from the medication and I feel like it has bought us some time to continue exploring other treatments.
 

If you are looking for more information here is a link to get you started.
http://www.riverbendds.org/index.htm Click on Medical Series, then ADHD.

Free Kindergarten ABA Apps for Autism Awareness Month

Kindergarten.com is offering all of their ABA apps free for the month of April in honor of Autism Awareness Month. I was actually going to purchase some this week after hearing about them over at Unringing the Bell. Really, I bought an iTunes card at the grocery store this weekend so I could get my fuel discount. Glad I didn't have time to use it!

FYI: The ones listed under the heading Flashcards were always free and the rest of them were 99 cents.

I would recommend the receptive language ones and I downloaded the Action Flashcards for Goldie because verbs are something she has been working on in speech.

March 21st is World Down Syndrome Day

Just a reminder that Monday, March 21st is World Down Syndrome Day. March 21st was also my due date when I was pregnant with Goldie. I guess she didn't want to be defined by her diagnosis since she chose to make her entrance ten days sooner!

Here is a link to the events going on in the United States on 3/21.

http://www.worlddownsyndromeday.org/usa.htm

Down Syndrome Deals!

Woodbine House 25% OFF

MARCH 21 only!! Woodbine House is offering an online sale of 25% off 40 products on Down syndrome and related issues in honor of World Down Syndrome Day. The sale lasts just for one day -- March 21, 2011, so be sure to order online on Monday at www.woodbinehouse.com


Talk Tools 40% OFF  DVD Sale

TalkTools is offering 40% off of their self-study dvds. I've also heard that if you call these dvds are available to parents for 50% off. Wish I had known that! If you are looking at the Down Syndrome Population dvd, mine is for sale. I have the CEU paperwork to go with it, as Goldie's therapists didn't need it. Just leave a comment or send me an email.


Down Syndrome: What You CAN Do
by Kim & Qadoshyah Fish

If you don't already have this awesome book now is the time to get it with free shipping until 3/21. Go here and use code GROUND305. I won a copy back in December and have referred to it numerous times since then. It is all the research I've been finding here and there, plus some a whole lot more, put together in one easy to use book. Just today I was ready the articles on Neurodevelopmental Therapy. This book is so positive and comprehensive; I wish it had been available when Goldie was born.

Goldie Knows the Alphabet

One thing I've learned is that Goldie is not a performer. She does not like to be tested on what she knows. A couple nights ago, Goldie got out her alphabet letters, so I grabbed the camcorder on the off chance that she would show off for me. I got lucky! Her are a couple videos of her identifying the letters of the alphabet. Part 2 includes some lowercase letters. You'll notice that instead of naming a couple of the vowels she tells me what sound they make.

Warning: the lighting is poor, her pajamas mismatched and the slip cover for our couch was in the laundry, but this is real life with 4 kids!

Happy Birthday! Goldie is 4

Goldie had a birthday last week! If you ask how old she is she will proudly hold up four fingers and say "four". After some practice she is even able to get her little thumb against the palm of her hand instead of behind her fingers. I never thought I would enjoy life's little details so much!

My favorite moment from her birthday this year: Goldie had done something she's not allowed, I don't remember what, and I was explaining why when out of nowhere she says, "Birthday. Four." and rooooolls her eyes. Like "Hello Mom, it's my birthday, I can't be in trouble. I get a free pass today!" Of course I cracked up after that, probably reinforcing whatever behavior I was trying to correct.

The last year has brought some big accomplishments! I'll list a few that I can think of off the top of my head.
- looking out for her brother (she was yelling "hurt" at him tonight as the went after an electric cord!)
- learning all the letters of the alphabet, upper and lowercase!
- asking and answering questions
- dressing herself
- beginning to sight read
- she can identify 9 different shapes and 10 colors
- growing tall enough to sit on the swing without help
- potty training, it has been over a month since we quit the pull-up habit!
- blowing bubbles
- turning door knobs

Wow! Just looking at this list has me excited for what the next year may bring!

Down Syndrome, ADHD and Sensory Processing Disorder

For over a month now I've had a half finished blog post titled "Down syndrome and ADHD" waiting for me to find the time to complete. Goldie was diagnosed with ADHD last month. I pursued the diagnosis for her so she would have access to treatments that I can't provide on my own.

Until recently, Goldie didn't have a consistent OT. I've inquired to her current and old OT about trying Therapeutic Listening or a weighted vest to help with her lack of focus and attention. I was beginning to think they were blowing me off, but I politely persisted.

Goldie's OT provided me with a sensory inventory to complete. I knew she would have differences in a couple areas, but the inventory revealed her sensory needs are much greater than we had realized. Her OT and Speech Therapist admitted that they had never observed behaviors that would indicate Goldie has a sensory processing disorder. We had a long and productive conversation where I was able to give the Occupational Therapist insight into her behaviors at home. Together we came up with some ideas to help Goldie.

Initially, it will mean more work on my part. My thoughts are that it can't be worse than redirecting her every two minutes! We already do a lot of sensory activities with Goldie like swinging and sensory tubs (probably why her behaviors weren't more obvious). Overall, I am relieved to know that this isn't just a "DS thing" and there is more that we can do for her. So when I'm not brushing, compressing joints and trying to keep the headphones on, I'll be working on some posts about these new diagnosis. If any of these are things you are already dealing with, I would love to know your favorite resources, books, etc...

So Smart!

Goldie was folding laundry today and came across a dress with little hearts all over it. One of the girls at Children's Hour has the same dress and wore it on Wednesday for the Valentine's Party. Goldie wore a different dress, but I still pointed out what her friend had on.

Sooo, I asked Goldie, "Who has the same dress and wore it to Children's Hour?"

Goldie replied, "Sydney, Sydney!"

Heck yeah! I always wonder how much she can remember. It's sooo hard to tell when a child has a speech delay and isn't able talk about their day and events like a typical child. So nice to have a little peak as to what she is taking in.

Down Syndrome Research Plan

DownSyndrome Achieves has recently held two web conferences on the abandonment of DS research. Now there's a title that gets your attention! I wasn't able to fully view either one, but the bottom line is that DS research is grossly underfunded and their is a huge disparity between the amount of funding that goes to fund Down syndrome research versus other conditions. You can sign up for more information at http://dsachieves.org/ .

I also found the National Institutes of Health Research Plan on Down Syndrome. It is an eighty page downloadable pdf. I have it downloaded to iBooks on my iPad for reading while Goldie is at therapy. Remember, information is power!

Research Study - Feeding Infants with Down Syndrome

Here is a link to a survey For biological mothers of children with Down syndrome. It doesn't take long to complete and is a great way to use your experience to further research for babies with Down syndrome.

http://www.mdsc.org/index.php?option=com_content&task=view&id=424&Itemid=39

The Highs and Lows of Applying for Waiver Services

One of my grandmother's prized possessions was a dining room suite she was given from her sister. The story goes that it was an expensive antique that her sister didn't have space for after her divorce so she gave it to my grandparents for helping her out. It's four pieces comprised 70% of the space in her dining room. The wood was thick and dark and carved in a gothic style that was completely out of place in her little cape cod home. In addition to the table was a long buffet against one wall and a china cupboard in the corner.

What I remember most about this table is not the carefully planned holiday meals. It is the layers of tablecloths, placemats and finally papers. Growing up I would walk around the table wondering about all the papers, mail, index cards, and sticky notes that were neatly laid all around it. In the adjacent room was a tiny office with a bulletin board and filing cabinet. The bulletin board was filled with more index cards and a calendar. My grandmother, like myself, was the type of person who needed to see what she had to do next. I think we would be called pile-ers.

When my husband and I were dating he mentioned how unorganized he thought this was. He couldn't understand why someone so neat and tidy as my grandmother would allow her antique dining room set to be blanketed with papers.

Today, my husband I both understand her system. She had a child with special needs.

I'm sitting here with 12 pages of notes detailing phone calls, agencies, numbers etc... In the last two months I've made close to 30 phone calls. All in search of services and supports for Goldie. Our family needs respite care. To get that she has to qualify for waiver services. That requires a psychological evaluation and an IQ test. To make it more complicated "they" can't find a doctor that will take Goldie's medicaid. The details of why are so tedious I don't even want to type them.

I'd rather talk about paper. I write everything down while on the phone. A name and number isn't enough. I need to know why I'm calling that person. I need to document what I'm told. Which brought me to my low point of the day. (Ironically,it wasn't holding my daughter while she wretched into a bucket at 3am.) It was the woman at the Department of Public Welfare who bore the brunt of my sleepless night. She casually told me Goldie's medicaid case was closing tomorrow and she wouldn't be covered anymore. No reason given. Then she began rattling off names and numbers and what I should ask these people to do. I kept telling her to slow down. (I was nursing Hank in one arm and writing with the other.) Finally, I began to cry and screamed at her to just STOP. "I have 4 kids, I can't remember it ALL. I have to write everything down."

What good does is it do me to call Mrs. Taylor if I can't remember that she is the person with the special list of doctors that will accept medicaid.

Except, she's not. She explained that yes, she has a list, but they probably won't take Goldie's medicaid. Then, the best part of my day, was when she told me "the system is horrible at best". At last, someone who will admit it!

(I just want to add that Goldie's medicaid does not run out tomorrow. She has another 30 days of coverage and they already have her renewal information in the system. So, she is good to go. No, worries.)

Coincidence

It's probably not a coincidence that my last blog post was the day before my husband gave me an early Christmas present. Just to prove that men might really be listening when we think they've tuned us out, he gifted me with an iPad. It feels good to be the luckiest girl I know! To top it off, he took charge of the kids for the day so I could play with it. I love it, Goldie loves it, even Hank loves it. But, my PC is definitely jealous. The iPad is so fast, quiet, and portable. It's the clear choice over the computer with a fan that never shuts off and runs so loud that you have to turn it off to watch television.

I'll do a brief recap of the other things that have kept me from sitting at the keyboard. Sick, Christmas, skin cancer (I'm ok, its been removed), Hank's FIRST birthday, cleaning and organizing with super husband, potty training, Mary Poppins, and now more sick. I left an item off of this list. It's something I've been working on for a couple months now and it needs its own post. However, don't get too excited, its about the dirty details of services and the system. Really, I'm writing it more for my sanity than anything else.