Fall is Approaching!

The mornings are getting crisper! The air is getting cooler and the days are getting shorter. I enjoy the fall weather, except for the days getting shorter. We are going apple picking this weekend, a favorite fall activity and one of my favorite days of the year!
I feel ready for the change, after the summer, which I love, it is nice to have cool weather and less sun. I am still diligent with sunblock, but the sun does not seem as strong. And as much as I like longer days, I am ready for earlier nights and getting everyone ready, it can be restful. So I am glad I live where the seasons change!

Dermatologist

Frankie went to the dermatologist back in July. I just wanted to get a baseline for his skin and any changes over the years. She said he looked good and we don't need to return for 5 years.
I got to ask her about sunblocks! She recommended these chemical free ones; Varicream 60, Neutrogena Sensitive Skin, Blue Lizard Sensetive Skin and California Baby.

Some recommended sites for sun protective clothing: Coolibar and Nozone.

New Baby Banz

Baby Banz sunglasses are now being made with clear lenses for children with special vision needs. The company is also making sunglasses for moms and dads too. Check them out!

Sunblock for George

Since Frankie needs sunblock mostly everyday, he is pretty used to getting it put on. But since he is 2, and exerting more independence each day, : ) he has days where he is very squirmy, moving, thrashing around! So today as I was putting it on, he happened to be holding his Curious George.
I pretended to put a little bit of sunblock in his hand and told him to rub it onto George so he was safe from the sun too. He loved doing it and asked for more and was occupied the whole time. We use this for other things like eating too, where he will feed George finger foods and then feed himself. But I was glad it worked well for sunblock, as well!

The Beach

We have braved the beach with Frankie a few times this summer, so far! I have always LOVED the beach and ocean. I went to Wildwood, NJ, as a kid, every summer with my family. The ocean, waves, sand, rides, salt air, fried fish, I love all of it! We started going to Falmouth, Cape Cod when lizzy was a baby and really enjoy that too. Since Frankie has been born the beach has been a bit more of a challenge. The sun bothers his eyes, and of course the thought of sunburn. But last weekend we went to Dennis, Cape Cod, and we went to the beach twice. We got there on Friday and went to the beach later in the afternoon, around 4:30. I think it was a much better time to go as far as the sun goes. I felt a little more relaxed that the sun was not as strong. Frankie still stayed under the umbrella, but had a great time and loved the sand. Lizzy, like me, loves everything about the beach! She loves to swim in the waves most of the time! We went another day and brought along a sun shade tent. Frankie enjoyed being in it and had snacks in there and dug in the sand. We didn't stay too long, but it was an enjoyable time!

New Info and Websites

Frankie's EI teacher gave me a site to look over for IEP information, the Federation for Children with Special Needs. There is a lot of great resources on it. Frankie will be 2 and 1/2 in November, so the IEP seems to be looming, and I am interested in researching more about it.

The SHADE foundation is once again this year, doing the Skating in the Shade program in Massachusetts. Children and parents can skate for free in the peak sun hours. Click here for schedule.

For some updates on us, Frankie had showed some interest in the potty; wanting to go when he gets changed, actually going on it a few times, asking about it. So we are taking it slow right now, but it is another sign of how he is growing so much!
We also don't change him on his changing table, because he figured out how to climb up on it after his nap, much to my shock! So we took the bar off that made it a changing table and now use the floor as a changing area. Without the bar, he could not pull himself up while climbing. He is such a little monkey. : )

Perkins Albinism Class

I have written some about the class at Perkins, but wanted to mention all the rest of the great things we did and learned. On the last day of class, (everyone was sad to see it end!), we did a sunblock experiment. We put sunblock in between transparent paper. We then went into a dark room and put photo paper under the transparent paper. We then went into the sun for a few minutes and came back inside to lift off the transparent paper with sunblock. You could see how much the sunblock protected, because the paper was not exposed. I used the Aveeno Baby sunblock and it protected quite well, judging from the experiment. I have been using it all season and it works great and does not irritate the skin.
We also got to test out some of the low vision aids. We got to try hand held magnifiers and ones mounted on glasses. I am going to call this week to the low vision clinic at Perkins to get an appointment for Frankie. That will be quite interesting to me.
There is also a workshop at Perkins where all kinds of devices are made to help blind and vision impaired children. The slant boards were very nice, it is a desk that is slanted at a 45 degree angle so the child does not have to strain their neck over so much to look at or read something. It is made from a type of cardboard, so it is lightweight too.
Overall, I do love the albinism class!

It's Getting Warmer, and Sunnier

As the spring is approaching, I have been thinking more about sun protection for Frankie! He loves hats, so that is great. Last year, I felt like I did not know what I was doing in regard to sun protection and I was quite nervous about it. But we made it through the summer and got used to applying sunblock and wearing hats.
I feel a little nervous again this year, but I know that once we get into the routine, it will be fine. I know he will be out and about more this summer because he is walking and loves to keep up with his big sister!
I like to use Banana Boat Baby tear free, the best.
What do others use?

Hats, Hats, Hats!!

Since sun protection is so important for kids with Albinism, Frankie has quite a collection of hats!! Baseball caps, bucket hats, flap hats, visors . . . we love hats! Baseball caps are great and you can get kids size ones in your favorite team, but make sure sunblock is applied to the back of the neck. Bucket hats supply more shade all around the child's head. Flap hats are great because they cover the whole back of the neck and sides too! They come in many beach themes. Visors tend to have a big brim, but again be aware of the back of the neck.
I really like the flap hats at Rugged Bear, they are called Flap Happy. Baby Banz has great flap hats, and One Step Ahead, as well.
Hats just become part of the wardrobe! I think they are great for sun protection for all. My daughter wears a lot of hats also. Let me know other places that you buy hats!

Sun Protection

Sun protection seemed quite overwhelming last year. I didn't know where to start! But we made it through Frankie's first summer of being out and about. We limited sun time and he napped during most of the peak sun time. Luckily our backyard is very shady and we got a swing set, so that was great!
For sunblock I really liked the Banana Boat Baby tear free 50. It worked well, he was well protected and it was gentle to his skin and eyes. The key is to reapply the sunblock frequently! And use it even on cloudy days.
Sunglasses are also very important for children with Albinism. The glare really bothers them and the sunglasses do wonders. I love the Baby Banz sunglasses.
There are also some great sun protective clothes with UV 50 protection in them. Last year I purchased clothes from One Step Ahead. I also was pleased with their car sunshades. If anyone else has good recommendations on car sun shades, please let me know.
Because people with albinism don't get much sun exposure with sunblock on, they need to be cautious about getting enough vitamin D. I made sure Frankie drinks plenty of milk, I buy fortified orange juice and he also takes a multi vitamin to be on the safe side.
The sun issues get easier with time and it becomes second nature to keep applying the sunblock and bringing it everywhere! Frankie loves to be outside, he would be out even all winter!