Thursday, September 30, 2010


Now these 3 letters strike fear into the hearts of many parents of special needs kids. Not so much for me. First of all, I spent years on the other side as the special needs teacher and secondly because I just do not need to ask for too much. That said, here is how it went for us today.

Ayden Jane officially does not meet the criteria as developmentally delayed from her testing. Yep. Never been so excited to be average in my life! She does qualify for speech services with a language delay from the testing Nicole did in August. (Jen has thankfully agreed to keep AJ on her case load for PT so they did not even evaluate PT or OT) So, we know that cognitive ability falls in the average range, receptive speech is at least average and expressive speech has made great gains. Actually, she does not qualify for a language delay for expressive speech accept for articulation. She has a number of omissions and substitutions which make her speech unintelligible to those who are unfamiliar with her. In simple terms, she has the vocabulary and complex sentence structure but needs a translator. Ayden Jane will have speech therapy weekly at the elementary school. Perfect.

I asked Ayden Jane's preschool teachers to give a summary of how she is doing to help at the meeting. I thought I would include all the great things she is doing as I am amazed at my little one. This is a preschool without special needs students. Her peers are typically developing kids in her age group. Ayden Jane turns 3 tomorrow and I could not think of a better way to celebrate.

Ayden Jane is doing great in school. She has adjusted very well and has recently started to come out of her shell and communicate a lot more. She understands directions very well and is usually engaged in classroom activities. She is communicating more and more, not only with her teachers, but with her fellow students as well.

*Ayden Jane is very independent. She loves to do things by herself and is very capable as well. (even more so than many of her classmates)
*She is a very good listener and follows directions very well.
*Even though she may struggle with certain activities, she is a very willing participant.

Ayden Jane is a very good student. We have noticed that only in a month's time she has made marked improvements. The greatest improvement we have seen is in her ability to socialize with others. A strength of hers is that she has a wide vocabulary, however she struggles with articulation.

*Ayden Jane struggles with group activities that involve lots of physical activity. She tends to be more of an observer. (my take: too much to process too quickly to keep up with the song...)
*She sometimes needs to be asked several times to do something. She often needs eye to eye contact to communicate effectively. (my take: again, that pesky processing, can't screen out all the background noise to catch what is being asked)

Sensory Input Importance

Well, it finally has happened. Rain, rain and more rain. We have had outdoor weather for months on end and we are now officially stuck inside. So, what's a mom to do? Well, Mckenna had soccer practice at an indoor place. It is actually an old warehouse with all sort of things going on inside now. While Mckenna practiced, Ayden Jane got to play on the inflatables. A huge slide, jumpy houses... She went strong for about an hour, had a quick snack and went back at it for another 30 min.

A little hide and seek anyone?

So other than it being lots of fun, why is it important? Her teachers told me she had an amazing day today and was just quick to jump into everything from answering questions to doing motions with songs to talking loud clear (well, loud anyway)... We have similar comments on mornings after a good swim. I still don't understand it, but the evidence just keeps mounting!

Wednesday, September 29, 2010

Opening Up

Ayden Jane has always been a bit shy with strangers. Okay, truth is, Ayden Jane has never even liked strangers. When she would meet new people she would just sort of stare at them, say nothing and not respond when spoken to. Umm. Yea, I know it is rude I just can't fix it.

She has been changing on that front. She now will regularly talk to people she doesn't really know. Not right away, but if I talk to them for a few minutes, then AJ decides they must be okay. The funny part is how she tries to engage conversation. Let's just say she is not ready to be a talk show host. She has a list of questions, basically, which she will ask. Here is an example of a 'conversation' she had last night at the volleyball game with one of the other parents, AJ: "What color is your hair?" Parent, "Brown, what color is your hair?" AJ: "Brown too. What color are your eyes?" Parent: "You tell me." (showing AJ her eyes). AJ: "Your eyes brown."... This sort of interaction goes for a while and usually includes, How old are you? It is pretty hysterical and if AJ gets through all her questions, no worries, she just starts over.

She sort of went through this stage with the rest of us at home, but now her 'conversations' with us are much more complicated. I am hoping the pattern continues. She begins new language skills with us until they are mastered, then moves on to generalizing them with others. For now, I am just glad she is being polite and no longer just staring at people. Of course, it is still very awkward conversation as we have to translate most of her questions anyway. This too will improve.

Ayden Jane's other favorite thing is to tease her siblings into playing with her. Last night Kayla was doing homework on the sofa when AJ wanted her attention. (remember it has been raining!) She took Kayla's pencil and ran away with it. She brought her another one and told her, "this one works," just so Kayla would start writing and she could swipe it again and run around the corner. Repeat. Repeat... This kid cracks herself up!

Tuesday, September 28, 2010

Trampoline Jumping Bean

Yesterday it rained. I mean the cats and dogs type of rain. It was the first day in a very long time that Ayden Jane has been stuck inside. Let's just say, I am glad we live in a climate where she can be an outdoor kid! Of course, without being able to run hard she did not feel the need for a nap. In fact, after about 30 minutes of singing and playing, tossing and turning, I gave up. Finally, when the big kids came home from school she jumped on, wrestled with, chased around, teased... Noah and Mckenna until about 5:30. When she hopped up to the table to get a snack before we headed to the high school for Kayla's volleyball game, this is what we found about 10 minutes later:
The big kids did their job!
Of course, after the snooze on the table it was still off to the volleyball game. I guess it is rough being the littlest.
Today when Ayden Jane got home from school (9-12) she was so excited to jump on the trampoline. It was like she had been caged up for weeks. She bounced around counting and doing her ABC's. Then she giggled and said, "I a trampoline jumping bean." Oh how true! It is funny how she just loves to talk and sing as she bounces. I wonder if we could do speech therapy up there?

Sunday, September 26, 2010

Random Fun

Just a fun weekend. I am sure it sounds strange to you northern folks, but we had a great beach day yesterday. Kayla, Noah, Mckenna, Ayden Jane and I all headed to the beach and an old friend and neighbor Kayla and Noah grew up with joined them. It was really just like old times. The big kids were great and Mckenna and a friend she ran into at the beach surfed with them. It was fun to watch them all just have a great time together. Noah took Ayden Jane out into the water for a while and she loved it. Of course, that meant she wanted to go back in and it was time for me to get wet. I do love this time of year at the beach.

The rest of the evening was spent mostly just hanging around. Noah and Mckenna played some board games after Kayla went to babysit. (Mckenna is still the reigning Chutes and Ladders champion) Nothing better for a mom than to watch and listen to the kids truly enjoying each other.

So what did Ayden Jane do all day? She went long and hard. We hit the beach around noon. I figured it would be an hour then nap time... Well we came home about 3:30! Nap was skipped, snacks were gone but energy abounded. Ayden Jane amazingly bounced off and on for the rest of the evening on the trampoline, climbed all over Kayla giving and asking for lots of big squeezes and egged on Mckenna and Noah to chase and play with her. I thought she would absolutely colapse by 7, but she did not give in to sleep until 8.

I have enjoyed doing nearly nothing, but I guess it is time for me to get to work. One busy week ahead!

Friday, September 24, 2010


I was faced today with how unbelievably important awareness of PWS is. We are so blessed that the folks at MUSC kept having us come back for follow ups. At the time, I so wanted to believe it was going to be okay and I didn't really even want to go. It was always hard watching them pick apart every little thing about Ayden Jane. In reality they were just searching for clues, but it was painful to watch. Ayden Jane was diagnosed at 8 months which is later than lots of kids, but still early enough to get full benefits of early intervention.

It doesn't go that way for all families. Some go for years struggling to get someone to listen and send them wherever it is they need to go to find the answers. As the research continues to uncover new hope for those diagnosed with PWS, I hope that also the awareness comes so that those who 'struggle and just don't know why' may find hope as well.

Thursday, September 23, 2010

Trampoline: First Glimpses

Grandma and Grandpa totally understand therapy! Happy Birthday Ayden Jane. The trampoline has arrived and is assembled. AJ's birthday is not until next week but here are some first day snap shots.

Mckenna and Jake (the neighbor boy) are so great with AJ. They curled up into balls and told Ayden Jane to bounce them.

This is a picture of Ayden Jane last night. She got out of the shower and decided to get dressed in Mckenna's room. She came roaring around the corner in Mckenna's shorts pulled up high. She was giggling away as she knew she is the funniest little kid on the planet!

Video will be coming soon I am sure!

Wednesday, September 22, 2010


For a while now Jen has been going back and forth over whether or not to put some form of support in Ayden Jane's shoes. The back and forth is mostly related to Ayden Jane looking fine sometimes and then needing support other times. Last Wed. during PT she watched her for a bit and decided we should go for it. Basically, Ayden Jane's feet stay in the proper position when she is walking and standing and aren't too bad running. What we saw, however, is that when she jumps off of things so has a good impact and particularly when she carries anything heavy or when she fatigues it all goes down hill fast.

So, we have decided on some shoe inserts which she will wear whenever she has the shoes on. She will wear them to school and when outside playing hard. I will be sure to give her lots of time out of them too to continue to strengthen those little feet and ankles in hopes we won't need them someday.

Monday we went to see Mr. Alan. Ayden Jane really liked him and he totally agreed that a simple shoe insert was the way to go. He checked her knees (a little laxity) and feet. His determination was that she has a good arch and foot position when non weight bearing, so just supporting her own natural foot position should to the trick.

So, step one was for Gary and I to get AJ some shoes. I know that sounds nuts, but she has been bare foot most the summer and has worn crocs if she needed shoes. When we went back to school shopping we tried to put shoes on her and she FREAKED out. We just gave up. The first pair we tried on seemed great, for a few minutes, then AJ began to again hate the feel of them. We tried another shoe and a bit bigger size. So far so good. She does not like to wear them long but is getting through school. Of course, they come off in the car on the way home, but I can live with that.

Sunday, September 19, 2010

Sibling Effects

I have posted before about the profound effect Kayla, Noah and Mckenna have on Ayden Jane and vice versa. I am so proud of all of them and how they have taken on their slightly different roles as big brother and sisters. One common thread is how proud of her they all are. Ayden Jane has an amazing cheering section in the three of them and all three are thrilled to tell anyone, "this is my sister and she is awesome."

All this to lead into a story from Mckenna about a week ago. Gary and I had just returned from the conference to DC and I was chatting with Mckenna before bed. She wanted to know about how Ayden Jane liked it and if she made friends and if people thought she was doing great... I told her that Ayden Jane had made several new friends and that lots of people thought she was doing great. (Mckenna is a little competitive;) I told her she needed to pray for Mom because there are new families that are asking me questions hoping I can help them so that their little ones can do things just like Ayden Jane. I told her I wanted to help and I remember the people that helped me and how grateful I was... We talked a bit and I told her the truth is that I am doing no more or less than lots of Moms and Dads, just that there is something in Ayden Jane that is working a little better. Mckenna did not hesitate for even a second. She looked me straight in the eye and said, "well Mom, did you tell them how many people are praying for Ayden Jane? I know all my friends are."

Awesome reminder from a little person. I just need to keep doing what I can and relax knowing that God is in control. He made her and she is His. Her road is not an easy one, but she will not walk it alone. I still go in circles with why she has Prader Willi syndrome. Okay why it even exists. Okay, why do any genetic disorders or cancer or diabetes... Not sure I will ever get that part of it all, but after a few circles I can look at Ayden Jane and I just know that there is something extra amazing about her. Maybe it being able to see God so vividly because He is at work filling in all the weaknesses. I guess I should go ask Mckenna. She has certainly come through this all with the faith and courage of a lion.

Friday, September 17, 2010

School and Appointments

First school. Ayden Jane loves school. From all the reports I am getting from her teachers so far they think she is doing great. I will eventually have to ask them to give me areas of need so I can work on things but for now I am just enjoying it. Why you ask? Well, I look at it this way. As much as I love to hear she is so great, I know there must be things she struggles with. If I don't know what they are, I can not help her conquer them. I know, I know. She is just a kid... give her time... I am just not sure that applies to AJ or any other special needs child.

Now don't get me wrong. I don't think they need therapy 24/7, just that the fact that we know some things are harder sort of means they won't just magically fix themselves. I have seen it time and again with Ayden Jane. She can do everything other toddlers do, but it often takes a few more guided practices before that muscle memory (or any other memory most likely) kicks in. I know that her developmental milestones have been met at low end of normal or only mildly delayed (which is incredible), but I also watched as she was literally taught to move certain ways. I know none of my other kids needed the teaching part. They saw, they did. I wish I could go back and watch them all over again and enjoy the magic. I knew they were amazing children, but I have such a grand perspective on how amazing now.

I digress. The point is, her teachers are wonderful and sweet and everything you could imagine in preschool teachers. They see her as a sweet, beautiful, incredible creation of God. I think it is gonna be hard for them to point out any shortcoming. Maybe I will just ask them to think of 3 things AJ and I can work on together.

Now appointments. I am really getting tired of them. Yes, I am whining and I really have no right to as things are going great. Here is the list. 2 hour home visit from the school district for transition to district services. (I only want speech but you gotta go through all the hoops) Hour or so of cognitive testing at the Elementary school. IEP meeting coming up on Sept. 30. Normal PT and ST. Eyes checked. Hearing screened. Monday I have an appointment to get AJ fitted with orthodics. 3 year well baby check coming. Return to Endo and to Genetics in Oct. I am sure I am leaving a few things out! I will be glad to be officially 3 with transition and 3 year appointments behind us!

Thursday, September 16, 2010


Of course we all know that swimming is great for everyone. It is low impact great exercise. Ayden Jane has loved the water from the beginning and we have always felt that we see benefits both in strength and, quite frankly, mood after she has been swimming.

Let me start by describing just what she does when we go swimming. She HATES to wear water wings/swimmies. So, we just let her go without them. She has become very comfortable in the water with a pool noodle. It is the best $1.50 I ever spent. Last night we went to the pool and Ayden Jane starts by jumping right in. Yep, before I even have a chance to put things down she is in the water. She hold the noodle as she jumps and pops right up. She loves it when we jump in and 'bomb' her. Shortly after she will take a hold of her noodle and swing one leg over to ride it like a horse. Once in this position she will balance, kick with her feet and paddle with her hands. She actually moves across the pool pretty well this way. Her latest trick is to 'swim' to the rope, throw her noodle over and head into the 9 ft! She then thinks it is funny to flip over her noodle like a somersault. She lets go and enjoys the weightless feeling, yes making me get the bigger work out. She usually goes wide open for 20 to 30 and then is content to play on the steps, swimming out and back without her noodle. Jumping in and swimming to me... It is just a calmer pace.

Here is what was new. When I picked up Ayden Jane from school today they were thrilled to tell me what an awesome day Ayden Jane had. She apparently was talking up a storm and over all less shy. They saw a real difference in her. Definitely have to try this experiment again. Of course, the problem is the pool will be getting cold soon!

FPWR Conference

Gary and I traveled to Bethesda MD for the FPWR conference. The drive was rough on Ayden Jane but the conference was sooo worth it. We were able to hear from a few of the incredibly intelligent researchers who are on a mission to find answers to the struggles for people with Prader Willi syndrome. Yippeee!!

For those interested in the details, I have to say Ali, over at and Susan at summarized it really well. I am not going to reinvent the wheel and post my notes. We may get our hands of some slide shows that we saw and I will post those if I figure out how.

The big picture of what we heard is HOPE. If not a cure for PWS, help for the many challenges. Help that may reduce the gnawing hunger. Help for behavior problems. Help for the so very common scoliosis. Help for the hypotonia they all struggle with. Help with the sleep apnea. Help with so many things.... The answers may come soon or may not come for a while, but just to know that someone is working really hard to find the answers and that it is possible that some answers are just around the corner is... well... unbelievably exciting doesn't even cover it. Impossible to put into words the feeling that there is hope to improve the future of your child when so much of their future is out of your control.

Now, if I can just raise a few hundred thousand dollars so they can get to work!

Tuesday, September 7, 2010

What's in a Name

Some one remarked about Ayden Jane's name the other day. I think she said it was, "unusual." I'll take that as a compliment, but it did make me stop and think about her name a bit.

When we were rolling around ideas for a name for baby number 4, we were having trouble coming up with a girls name. Several names kicked around, but for whatever reason, Gary and I both liked Ayden. Sort of like as soon as we heard it we knew that was it. As for the middle name, it was actually Mckenna that first suggested Jane. It just fit so...

What we were unaware of was how unbelievably accurate a description for our little one the name would be. A quick search for the meaning of the name Ayden reveals: Little fire. (Need I say more). The name Jane: God is gracious. Wow. Our Ayden Jane could not have much more fire. She is fiery about the way she is determined to keep up with her siblings, about doing it herself!, but I would also say that the passion with which she has fun is another form of that fire. Yep. No matter what AJ is doing, it is with her whole heart. If only we could all live that way. As for Jane, well, to have held her as an unbelievably frail infant and watched the personality, strength and fire grow... Well, I guess I get to live with God's grace. We are truly blessed.

Monday, September 6, 2010

Just Plain Funny

So Ayden Jane, when not driving me crazy, is absolutely hilarious. Thought I would just share a couple of AJ stories.

Last night Ayden Jane asked Gary to paint her nails. She had the nail polish in hand and came halfway down the hall to him. She stopped and said no thank you and turned back. Gary and I chatted for a minute and then realized that she didn't come back. I went to our room to check on her and she was painting her own nails! I was beautiful let me tell you. I, of course, took the nail polish and told her she is not to do it herself... I went out of the room pretty quickly because Gary was heading out the door to work and I needed to tell him something. I then looked back down the hall and there was a little head peeking around the corner. She grinned and said, "I a silly goose?" Totally testing the waters to see if it was safe to come out.

Tonight, we were doing a bit of shopping with my Mom. Yep. Grandma shopping which means actually buying more than usual! Any way, early in the shopping Ayden Jane found a favorite outfit. She held onto it and hugged it the rest of the evening. She kept saying thank you and I love my new clothes... At the end, she put them up on the counter with the rest of the items. There were quite a few things so it was taking a minute. Ayden Jane piped up as plain as day, "are you done with my flower shirt yet?" She was getting quite impatient with the clerk...

Finally, we were at McDonalds the other day. AJ needed to go potty so off we went. About half way there she stops (from her usual full run) and turns to me, hold up her hand and says, "no mommy, I do it myself." Ummm. Not sure I am ready to let my two year old maneuver her way through a public bathroom just yet thank you. AJ was adamant, but luckily the door was too heavy. After a bit of negotiation I was allowed to stand inside the bathroom near the sink, but that was it. I was sort of stuck in the whole scenario because, well, if I argued too long AJ could be arguing from a puddle. She knew all along that she had a fair amount of power in this power struggle.

Saturday, September 4, 2010

"She is so independent"

Okay, so on one hand that phrase makes me happy. On the other hand, it makes my days much more difficult than they have to be!

I have been told by many people that Ayden Jane is so independent and it is always meant as a compliment.... Sometimes I wonder if she is that way because we have always done what we can to encourage her to do things herself. Sort of like a life of therapy. I am guessing, though, that it is at least partly just the way God made her. (she is my daughter!) For the most part this is a very good quality. Sometimes, however, it is enough to drive me crazy.

For example, trying to get out the door to go... anywhere. Ayden Jane wants to choose her clothes and dress herself. I really have no concern for what matches and am pretty laid back as far as whether she is dress nicely or not. I do, however, insist that underwear go under the pants. Ayden Jane is capable of getting dressed but it is a long process, usually requiring a couple of tries on some article of clothing complete with a small tantrum over the fact that it didn't go smoothly the first time. Then there are shoes which may or may not be on the right feet. Finally, when we get to the car, she feels the need to get into her car seat herself...

I know that this is part of her age, turning 3! It is also part of the reason she is doing so great. All you have to do is tell her she can't do something and you have guaranteed it will be done! The trouble with her independence is that it is coupled with NO concept of fear. Parking lots can be frightening because she has no fear of moving vehicles. Crowds? her favorite place to practice bobbing and weaving. Water? she will jump in with no concern. Wandering off? all it takes is something to catch her eye and she will go anywhere. The only thing she reliably stays back from is strangers. At least I have that one covered.

I just hope that as her teachers continue to comment on how independent she is that they mean it as a compliment:)

Friday, September 3, 2010

School, Stitches and PT

Let's start with school. Ayden Jane absolutely loves school. She asks in the morning, "i go my school?" A yes answer always brings big grins and excitement. She names several friends from her class and when asked what she did at school always answers, "we sing songs at school." It is so fun to pull up through the pick up line and watch her grin as she holds her teachers hand and walks down the steps. (She fought the hand holding at first). Her teachers tell me how independent she is. She apparently does not say much at school, but her vocabulary is blooming at home. She is learning so much just being in a new language rich environment. We had a parents get together last night. The director stopped to chat with us and told us how much she loves Ayden Jane's great little personality. She is a woman who loves and independent streak and so the two are two peas in a pod. I feel so blessed to have Ayden Jane is a place that already loves her to pieces and it is only a couple of weeks into the year!

On to stitches. Ayden Jane decided a few days ago to climb into her crib to get something. She managed to pop open a stitch... She came to me and said, "I need a go to the doctor." I did not catch on... Finally, I noticed the blood under her chin and on her neck. It was not too bad so we just decided to let it alone. Let's just say the scar will not be as pretty as it would have been otherwise, but it is up under her chin where no one will see it anyway.

Now for PT. I think we are finally coming off of the last wave of sensory whatever AJ goes through. She is much easier to deal with, can keep her clothes on, can focus, is not clenching every 10 seconds, is not as quick to yell, is not running into things or going so fast... is happy and more under control. Jen said she did great in PT. Jen brought back a bucket of beans that Ayden Jane used to love. She had her weighted and standing in them reaching, bending, doing matching puzzle things... Ayden Jane loved the beans. We decided maybe she needs a sort of pool of beans/rice mixture to sit in when she needs to calm down... Maybe between the trampoline on it's way, a nice bean bucket and a new weighted blanket, we will be able to ride out the next storm more smoothly.

On the flip side, language, language and cognition, cognition seem to be the results of the latest spurt. The more she can say, the more we find out what goes through that cute little head, the more we see how funny this little kid is. The sense of humor astounds me. The confidence she has regained now that she is back in control of her little body (for the most part) is a little scary though. I am sure it is the cause of her return to climbing. I have found her in her crib, scaling her dresser, on the counter, standing on her rocking bouncing horse, just don't even look at her on the bleachers at the Kayla's volleyball games, trying to walk curbs like a balance beam, standing on her rocking chair... I think you get the picture.