Large Special Needs Bike Trailer

We have been a bike riding family since our son, Matthew, who has Agenesis of the Corpus Callosum, was a baby. It's something we all three love to do!

We started taking family bike rides around our neighborhood when our child was about 9 months old. Matthew loved going for bike rides on the back of his daddy's bike in his carrier (with his adorable little bike helmet--personalized with a "Matt Cool Cat" nametag, made by his dad).

We would even load up our bikes and take them with us on vacations.

Since the time Matthew was a baby, we eagerly drove over Mt. Hood during the summer in July (and sometimes in September)--year after year--to a place called Sunriver in Central Oregon, where they have 35 miles of paved bike paths...

surrounded by nature, with beautiful scenic mountains, Lake Aspen, the Deschutes River, and...

deer that wander right in the backyard of the vacation homes we stay at, among many other fun things to do.

But, sadly, after several years, our wonderful family bike rides came to a screeching halt when our child outgrew the baby/little kid bike carrier, and he could no longer fit inside the typical small bike trailers!

Matthew was, however, able to ride a Rifton 3 wheel adaptive trike--at about 7 or 8 years of age, (with close standing supervision from his dad or I), but he was not able to ride a two wheel bike (like some kids, who have ACC, also have challenges with).

We still very much wanted to find a way to have the opportunity to continue our fun ♥ family ♥ bike ride adventures.

So, we went to bike shops (here in town and also in Sunriver) to inquire about larger bike trailers--plus we even tried Matthew in some of the typical bike trailers (that appeared a bit larger), but he was just too big to fit comfortably inside.

The disappointment I felt during one of our Sunriver (no family bike ride) trips, fired up my engine of determination to find a bike trailer for our child that would fit him and our family's needs, allowing us to pedal those bike paths to our 3 heart's content, with one very special big boy sweetheart in tow.

Well, during my motivated "mommy won't give up" (online search) I was ecstatic when I finally discovered a big, beautiful, blue and yellow bike carrier, especially for people who have special needs, made by a company in Ontario, Canada, called Wike!

Our dream of family bike rides was once again actually going to come true!!

Wike Large Special Needs Bike Trailer

The Wike special needs bike trailer (large size only)-- also converts to an optional stroller:

and jogger, (for an additional cost.)

Plus, Wike also sells additional bike trailer accessories to meet the extra needs that some children with special needs might require.

We happened to mention to our son's developmental disabilities case manager one day (when he was younger) during a home visit that we found a Wike special needs bike trailer and at the end of the home visit she surprised our socks off by generously informing us that they had a one-time end of the year funding available and if we would like the Large Special Needs Bike Trailer for Matthew, they would purchase it for him!?!? Wow! We could hardly believe their amazing generosity. We were astonished and super thrilled and very grateful!

Thanks to the county developmental disabilities program, our son (who was about 10 years old at the time) got a brand new Wike Large Special Needs Bike Trailer with the stroller/jogger conversion (which we love). That was over eight years ago. Our son is 18 years old now.

Truth be told -- if the developmental disabilities family support program didn't fund the bike trailer for Matthew, we would have gladly spent the money out of our own pockets just to be able to resume our very special love of family bike riding with our son.

A marvelous feature on the Wike Special Needs Bike Trailer (that is a Godsend for our son, who gets mega-bitten by the dreaded mosquitoes, resulting in numerous big swollen bug bites) is the awesome built-in mosquito net to keep mosquitoes away from your little (or big) sweeties. It definitely works! That positively perfect feature allowed our family to take an evening summer stroll in the (mosquito thick) high desert, enjoying the village shops and music--while keeping our sweet son--who is a mosquito magnet--safe inside his bike trailer the entire time, with no mosquito bites! If there are mosquitoes within a mile of our son, they will find and devour him--but not anymore (when he's inside his Wike bike trailer with the mosquito proof net). *blows a kiss to Wike* This Mama thanks you very much!

Check out the mosquito net video demo:

This summer in July, we once again put the bike trailer in our truck and headed to Sunriver for a mini 4 day vacation.

While relaxing on the back patio of the home we rented, we were treated to the sight of a mother and father Quail with their very quick baby quail chicks all in a row (about 12+ chicks total--hard to count the speedy lil things). Then, while on a "Mama by myself" quiet walk on the path along Lake Aspen, I stopped and admired several tiny baby ducklings upon the water, working hard to swim through the top covering of green algae; their mommy duck nearby, and later on was startled at the sight of a deer grazing just across the road from me--who got spooked and skipped off across the pavement near me, leaving the imprinted sound of horses hooves in my mind. Plus, during my walk I was also completely captured, and caught by surprise, at the breathtaking sight of horses running free across a large, open meadow.

Sunriver Resort surrounded by nature

On this recent Sunriver trip, we discovered that this will most likely be our growing son's last year in the Large Special Needs Bike Trailer, since he's nearing the maximum height and weight capacity limit of 5 feet 4 inches and 125 pounds. How do we know that? Well, because while pushing our son in it, stroller style, (and when we were helping him to get in and out of the bike trailer), it became too easy to tip backwards if our teenage son slightly moved around inside, if you weren't at the back of the carrier, at all times, holding the push handle firmly.

Wike also sells an Extra Large Special Needs Bike Trailer that will accommodate a person who is up to 150 pounds maximum, with a maximum height of 5 feet 10 inches tall.

Note: the extra large special needs bike trailer does not convert to a stroller or jogger.

What do we love about the Wike Large Special Needs Bike Trailer, besides the obvious?

1. It converts to a stroller and is very easy to push (even with a big child inside);
2. The stroller conversion pushes easier than our son's wheelchair;
3. It also converts to a jogger - though not with the same easy maneuvering/turning as the stroller;
4. It has a zippered "mosquito" net enclosure to stop our son from getting mosquito bites, (plus also comes with a plastic rain enclosure); and
5. Our son enjoys riding in it.

A Few Things To Know (from our personal experience and viewpoint):

1. It is hard on knees/body to tow (up hills) a bigger child who weighs more in the bike trailer;
2. It can be difficult to physically get a bigger child inside, who isn't able to climb in himself;
3. We don't trust the plastic bike trailer brake to hold securely.

We Wish:

1. that Wike would make a stroller/jogger conversion upgrade possible for the Extra Large Special Needs Bike Trailer.

Over the past few years I have seen other families mention the same longing that we experienced in not having a way to include their child with special needs on family bike rides. It's very special to know that there IS a large bike trailer out there made by a wonderful company, Wike, who cares about the different needs of families and who created an incredible special needs bike trailer, allowing very special family bike rides (for the entire family)!

Sunriver Oregon on a bike path stroll along Lake Aspen

Thank you very much Wike in Canada! We love you -- and your special needs bike trailer, too!

Note: please be advised that I did not receive compensation of any kind from Wike (or Sunriver Resort either). This blog post is provided in the hopes that it might bring about awareness (from a family's perspective who have a child with special needs) and it is offered as a possible resource for other families who are searching for a special needs bike trailer, like I once was for our family.

P.S. At the beginning of September we will be eagerly heading back to our new favorite house in Sunriver for more spectacular nature-filled bike rides, picture-taking, wide-eyed deer gazing, picnics on the patio, night star viewing at the Oregon Observatory at Sunriver--a one-of-a-kind facility--located just past Lake Aspen, (a short and easy walk down the road from our rental house), plus leisurely walks along lakeside pathways, swimming at the new Sunriver SHARC indoor/outdoor water park (Matthew's favorite), and for even more family fun -- because this time we are bringing along Matthew's Grandma and Grandpa!

ACC & Moms-To-Be Story #15 - Twins!

I am incredibly thankful to all of the Moms and Dads who want to tell their story about being pregnant and having a baby with Agenesis of the Corpus Callosum.

Every story is as unique as each child who has ACC.

Just a few days after posting the last ACC Pregnancy Story #14 by Mum Susan in Canberra Australia, I was contacted by Kate, another Mum in Australia, who expressed an interest in sharing her own ACC pregnancy story -- about having ♥ TWINS ♥

In her own words, in an e-mail to me, (shared here with her permission), Kate wrote:

"I have twins and my daughter was diagnosed with ACC at one of our pre-natal scans! Our son is ok.

I have read alot about this and so far haven't found any stories/Information relating to ACC children who have a twin, therefore if possible would like to share my story."

I am thrilled that Kate contacted me and am so very grateful to be able to include Kate's ACC Pregnancy Story here.

I truly believe that every story told will ultimately reach out and touch the life of someone else in very special, very amazing ways.

Kate, thank you very much. It is a privilege and an absolute honor to be able to post your story here on the blog for others to read. I would like to extend my gratitude to you from my heart for your willingness to express your pregnancy story in words (and pictures) and for your desire to reach out to other families and offer hope.

Written by Kate

My story starts with our struggle to get pregnant. After a year of unsuccessful trying my husband and I started IVF. We found that our struggle was due to my having blocked tubes and a ‘balanced translocation’ (chromosome abnormality) which meant that only 2 out of every 16 of my eggs would be genetically sound enough to grow into a baby. We went through a number of IVF (In Vitro Fertilisation) cycles but unfortunately all of my eggs through these cycles were unbalanced and therefore unable to be used. This was the hardest thing that I have had to go through and the most emotionally draining. Knowing that we were not able to use my eggs, made me feel like a bit of a failure and it took me a while to get used to the idea of egg donation. However, at the end of the day, I realised that DNA doesn’t make you a parent, the everlasting love you feel for your child is what makes you a parent. On our first cycle using the donor eggs we found out we were pregnant with twins.

Twins was something we knew was a possibility, but after such a hard road in trying to have a baby to hear we were having two babies was just amazing. The first 5 months of the pregnancy were great, no morning sickness and I was feeling good. At our 20 week scan we found out we were having a boy and a girl, we were so excited and felt so lucky to be having one of each. Unfortunately, the excitement ended there when we were then told that something appeared to be wrong with our little girl. The doctor told us that he could not see her corpus callosum on the scan. He advised us that it seemed that she had complete agenesis of the corpus callosum (ACC). He explained that there were a number of different outcomes that we could face, ranging from this being an isolated abnormality and our daughter being mostly fine, right through to severe retardation resulting from a number of potentially associated syndromes of ACC. My heart sank and all I could do was cry and think about my little girl’s future. Thankfully our son seemed to be okay from the scan. It’s every expectant parent’s worst nightmare to hear that something could be wrong with their child. The doctor gave us the option to terminate, but to us that was definately not an option for a number of reasons. For one, she was a twin and if we were to terminate her, that would potentially endanger the life of her twin brother as well. Secondly, how could we possibly terminate a child based on the unknown, when from the scan she seemed to be developing normally with two arms and two legs and normal head size, seeming to not look like she had any other syndromes. There was no way we could terminate when we just had no idea how she would be.

The doctor sent us away with a referral for a fetal MRI and told us not to google any information on ACC as a lot of the information out there painted some of the worst case scenarios. My husband works in the medical profession and therefore was able to google for me and put it into context, pulling out the useful information so that I could get my head around what we could be facing. The best way he could describe it from what he read was that our daughter was missing the “main super-highway of nerves” between the left and right side of her brain, meaning for her to get communication from left to right brain and vice versa, she would need to use the slower “backstreet” nerve connections. Using these slower “backstreet” nerves instead of having a “super-highway”, it may take her a little longer for her to undertake actions requiring left and right brain conduction, but she will get there in the end. Everything else we read lead to the unknown of “maybe’s” and that was the hardest part.

At 22 weeks we went for the fetal MRI and that confirmed the diagnosis. Although we knew what the results would show, hearing it confirmed was heartbreaking and reaffirmed the potential challenges ahead. The fetal MRI also showed that our daughter had enlarged cerebral ventricles (ventriculomegaly) which in a normal brain can be bad and a sign of hydrocephalus, more cause for worry on my part. However, having my husband understand everything being told to us and being able to explain it to me in a way I would understand was comforting. We had another fetal MRI at 33 weeks and a number of other doctor appointments and scans to keep an eye on her progress.

At 36 weeks Noah & Tahlia were born, I was nervous and excited. On the one hand I wanted for them to be born so I could meet them and see how Tahlia was, but on the other hand I wanted to keep her inside where I could protect her. So many things running through my head, but I had nothing to be nervous about, they were perfect, everything we could have wished for. Tahlia did not have any problems after being born as a result of having ACC. She scored a 9/10 on her Apgar tests, and passed her hearing test on day 4.

Tahlia & Noah soon after birth (Tahlia is at the back of the photo)

2 Days Old (Noah in Blue, Tahlia in Purple)

When Tahlia was 2 days old, she was taken for an ultrasound of her head and what we originally saw in the MRI of ventriculomegaly, turned out to be a perfectly acceptable result because of the increased space in a brain with the absence of the corpus callosum. She and Noah stayed in hospital for 2 weeks due to the fact that they were preemies. At the beginning they were both tube fed as they were born early. Once we managed to get them onto all suck feeds (some breast, some bottle) and they received the all clear from the paediatrician we were able to bring our little bundles home.

Since birth, we have been observing Tahlia’s growth and progress. Our expectations have been quite broad because of the “unknown” factor you get from everything you read on ACC. We have had regular paediatric specialist reviews, including a paediatric neurologist, as well as initial and ongoing assessments from occupational therapists and physiotherapists, recommended to us because the impact of ACC on developmental milestones.

Noah and Tahlia sitting by themselves at 7 months

Now 2 weeks away from their 1st birthday, Tahlia is doing great and we couldn’t ask for anything more. She has met all her milestones so far and has only been within 2-4 weeks of her brother. She is crawling, cruising, talking (as much as a 12 month old talks anyway), and has just started standing by herself. The look she gets on her face when she has done something by herself just melts your heart. She is so proud of herself and so are we. She has adjusted to finger food well and has loved everything we have given her. She is able to pick up toys with no trouble and passes them from hand to hand well. All in all, she is doing everything a normal 12 month old should be. We are so lucky and grateful that she is doing so well, as we know that things could have turned out differently.

Tahlia at 11 months standing by herself

We are not sure whether having a twin brother has helped Tahlia anymore then if she wasn’t a twin, but we feel having a twin brother has been a blessing for her. She looks at Noah and whenever he does something you can see the concentration in her face thinking “I want to do that too”. She watches everything he does and when he does something new it normally doesn’t take too long before she is trying it too. Having a twin brother is probably the best therapy Tahlia can have at the moment. Having Noah there as a “control” has been helpful for us too. However, I must admit that there are times when Tahlia will do something differently than Noah, for example pushing her bottle out of her mouth rather then pulling it in to drink, and I’ll think “Is she doing this because of the ACC?” But then I think that’s just me over thinking things, all babies are different. As well, there are slight differences in development between boys and girls. Seeing Tahlia start to interact with Noah and play games with him is so nice to watch. To us she is just as normal as her brother and if we didn’t know about the ACC, you wouldn’t think that anything was wrong with her.

9 Months Old

Partners in Crime

Tahlia continues to see a physio once a month, not because anything is wrong but so we are able to stay on top of her progress. Every time we go to see the physio she gives us new things to try for Tahlia and to her surprise Tahlia is already doing a lot of those things. Both the physio and doctors are really happy with how she is going. Having said that we know that just because she is doing well now, doesn’t mean she won’t need a bit of extra attention in the future. But for the time being we are taking things one day at a time and just enjoying our twins and watching them grow.

All of these stories gave me hope when Tahlia was first diagnosed, so I hope my story is able to do the same for other families facing similar situations. I want to finish my story with this quote. Any parent that has a child with a disability or health issues will understand how true this is...

“Children with disabilities are like butterflies with a broken wing. They are just as beautiful as all others but they just need a little help to spread their wings."

Kate
Mum of Tahlia and Noah (twins)
Gold Coast in Queensland, Australia
11 July 2012

If you would like to get in touch with Kate, you can contact her through e-mail:
kate.raftery@hotmail.com

There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please E-mail me, (Sandie):
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-To-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

ACC & Moms-To-Be Story #14

I am incredibly thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

Out of the blue I was surprisingly contacted by Susan in Canberra Australia, Mum of an adorable baby girl, who expressed a desire to share her own story. I was quite eager to get in touch with Susan, and it has been a pleasure to exchange e-mails with her.

I am very grateful to be able to include Susan's ACC Pregnancy Story here.

I believe that every story told will ultimately reach out and touch the life of someone else in very special ways.

Thank you very much, Susan. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to give thanks to you from my heart for your willingness to express your story in words and pictures and for your determined desire to reach out to others and offer hope.

Written by Susan

Layla’s Story

I've been meaning to post my experience for a while, given that many of the posts on this website helped me through a particularly difficult time last year when my growing baby was identified as having ACC (agenesis of the corpus callosum) at her 20 week scan in utero.

At first the doctors couldn't explain properly what this meant. We were referred to specialists; I had an MRI of my baby in utero and we underwent a plethora of testing, much of which is a blur to me now. At first my husband and I weren't too worried - we tried to brush it off as a mild ‘defect’. But the more the doctors delved and advised, the more frightened we became.

Can you imagine the fear of an expectant mother who is told that the nature of her child is uncertain? That, if other associated syndromes were identified, then we would be strongly advised to abort the child. The child would certainly have little quality of life and we the parents would become full-time carers for the remainder of our lives. Terminate - at 30 + weeks by this stage - all the while my baby growing and kicking inside me, forming a close bond. How could a parent make such a decision? I recall lying in the bath night after night crying, depressed at the thought of the unknown.

Thankfully, miraculously, testing showed no associated syndromes. This was apparently a very rare occurrence, but one that I was thankful for nonetheless. Still, our doctor explained that even in an isolated case of ACC the outcomes would be unknown. There was simply no way to predict how affected the child would be. She could be only very mildly affected or she could be severely retarded. That said, the chances of mild symptoms were more likely in isolated ACC.

All the while, fluid was building up on the baby’s brain. At 37 weeks my doctor delivered my beautiful baby girl, Layla, via C-section, allowing the opportunity to take action on the fluid build-up if necessary. But even on the way into C-section surgery, my doctor warned that my baby could still die. My doctor proceeded to tell me that babies with significant health problems always had an increased chance of dying soon after birth – it was “nature’s way”. My C-section was thus very stressful, as I remember, and I am certain that I suffered post-traumatic stress or depression or whatever one will label it as a result of this entire ordeal.

However, Layla was born perfect. She remained in a humidicrib for several days and was whisked away for further head scans and testing.

Layla soon after birth

Mum and Layla still in hospital 10 days later

We subsequently measured her head circumference twice weekly, then weekly, then monthly, then quarterly. We travelled to Sydney Children’s’ Hospital numerous times consulting neurosurgeons, paediatric neurologists and geneticists. Thankfully, Layla has never needed a shunt or any other surgical intervention to this point. The fluid on her brain has stabilised, as has her head growth.

3 week old Layla with her big sister

Fast forward one year (she turned 12 months last week) - Layla is a beautiful, delightful little girl, behind on her milestones and slightly out of proportion (her head bigger than her body), but very bright and engaging. She has just started sitting up but cannot yet crawl. She has started to babble and make certain sounds, but still cannot pronounce one single word. She still eats only coarsely mashed foods and hasn't yet mastered finger foods. However, she is reasonably dexterous and explores toys with both hands.

Layla at 9 months

Mentally and intelligently she seems fine so far. She responds to 'jokes' - i.e. peek-a-boo, tickling, teasing, etc. And gives appropriate reactions to specific situations. She is intensely interested in her older sister (2 & 1/2 yrs) and becomes frustrated at not being able to follow her around the house.

We have been very well supported with early intervention services. Layla has physio, and occupational and speech therapy, suitable for her age.

We are under no illusion that all will be plain sailing in the future. My husband and I are constantly on guard, always looking for signs of autistic tendencies, providing early intervention as necessary, and exposing her to a range of experiences to bring her along as lovingly as possible.

We've always said that she doesn't need to be a rocket scientist. As long as she knows right from wrong and is an honest, loving person she will make us very proud.

I really wish that this article gives hope to someone out there who is dealing in relative silence with similar issues. Our hearts are with all parents dealing with difficult health issues with their children. But know that you are not alone; that these issues are perhaps more common than we might think; and that there is always a positive in every negative.

Side note: As an afterthought, perhaps it is worth sharing some of Layla’s other health issues for the benefit of other ACC families. Similar to Mum Michelle (Pregnancy Story #12), my daughter Layla was diagnosed with an enlarged left kidney in utero. For us, this was at the 28 week scan - the same scan that confirmed Layla’s suspected ACC and identified for the first time her enlarged ventricles. At that time, the doctors could not say what exactly was wrong with the kidney. However, they tried to allay our concerns by suggesting that the kidney issue was secondary to the more immediate fluid build-up issue. Post birth, Layla’s renal scans showed a slightly deformed left kidney, which increased her risk of urinary tract infections. To manage this risk, Layla has been taking low-dose antibiotics daily since birth. However, in the last six months, further kidney scans have showed the appearance of small crystal-like stones (the doctors won’t describe them exactly as kidney stones). Needless to say, this is more cause for concern for us, and it is something that we (with doctors) are continuing to monitor.

Also post birth, Layla was diagnosed with a heart murmur, which the doctors suggest is not serious and is most likely something she will grow out of. She was also born with stridor, or a partially collapsed or ‘floppy’ airway. Again, the doctors suggest that she will grow out of this as the airway grows and hardens over time. Nevertheless, the initial gurgling noises that Layla made as she breathed scared me to the point where I couldn’t sleep and I was checking her breathing every 10 to 30 minutes. But, since birth, her breathing has improved and I am oblivious to it now until another Mum comments to me that, “Oh, she has a nasty cold, doesn’t she?”. I reply, “Oh no, that’s just normal”.

Although it was never diagnosed, I am sure that Layla suffered reflux as an infant. She would scream and cry often (more than an average infant), and I would find it hard to console her. I ended up trying various non-prescription medicine, some of which did help to ease her discomfort. Coupled with that, Layla has suffered constipation since about 3 months old. Again, we are using non-prescription medicine to manage this.

I hope that this helps other parents, as other stories on this website have helped me to make better sense of Layla’s range of health issues.

Susan
Canberra
Australia
28 June 2012

If you read Layla's Story and would like to get in touch with Susan, Layla's Mum, you can contact her through e-mail: susan.moore@3st.com.au

There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please E-mail me, (Sandie):
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-To-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

iPad protective case--with amplified speakers

We contemplated getting an iPad for our son, Matthew, who has agenesis of the corpus callosum.

I knew that if we got an iPad for him, we would also need to have a protective case--one that would meet his needs. So....I spent lots of time researching all kinds -- from simple to more elaborate cases for the iPad and I read lots of other parent's reviews (who have a child with special needs). I had a few choices in mind, for my son, that I liked.

In the meantime, we decided to borrow an iPad for our son BEFORE making the decision to buy.

When Matthew was in public school, I became aware that, in Oregon, we have access to a place called OTAP (Oregon Technology Access Program).

OTAP is located in Roseburg, Oregon and they have a Loan Library that offers a variety of technology equipment from speech-communication devices, to adaptive toys, to a variety of miscellaneous items.

Now here's the cool part. You can borrow equipment from OTAP for one month for free to try it in your home! Yes, it's true and it's fantastic!

I do want to add that some expensive items you borrow (for example: some communication devices) may require you to take out insurance when sending them back. So please be sure to ask before you borrow something on loan so you know, upfront ahead of time, about any costs you might incur due to insuring an item for it's return back to OTAP.

"OTAP services are available to anyone concerned with the needs of Oregon's children with disabilities from birth to age twenty-one."

OTAP has an iPad (Item #256) in their lending library so we eagerly filled out the form and were on our way to borrowing it for Matthew!

When the iPad arrived, we discovered that it came housed inside (one of the cases that I had been researching) the iAdapter case!

I was instantly sold!

It [the iAdapter 2 case] was exactly what we were looking for in a protective case for our son, to meet his needs.

Plus, the iPad that we borrowed from OTAP came fully loaded with many educational apps and speech-communication apps (like Proloquo2Go, and TouchChat and others) to try.

After our free one month trial of the iPad with our son, we made the decision to go ahead and purchase an iPad2 AND the iAdapter 2 case.

iPad + iAdapter case = a perfect match

We purchased the iAdapter 2 case directly from AMDI (Advanced Multimedia Devices, Inc.). We paid $265.00. We love the iAdapter2 for the iPad2. They also make an iAdapter for the original iPad.

• AMDI - iAdapter Housings
• iAdapter 1 (for original iPad)
• iAdapter 2 (for iPad2)
• iAdapter 3 (for iPad3) *available June 15, 2012

What we especially love about the iAdapter is:

1. It has built-in speakers so it amplifies the sound/volume of the iPad2, making it easier to hear when you are out in public, in a noisy restaurant or other loud environment, (or for a child in a school classroom or lunchroom, etc.)

2. It has a slide switch that covers up the 'home' button on the iPad blocking the child/user from continually pushing it and leaving the program they are working on.
 
3. It has a great carry handle (easy to pick up and carry around)

Did I mention that we ♥ it? ;)

For more information and a visual view of the iAdapter, watch the video below:

*Note: please be advised the video is from a different company in the United Kingdom (and is not AMDI)

Matthew's new case manager through Brokerage (a service that supports adults with developmental disabilties) was at our home last week for a home meeting with us and when she saw Matthew using his iPad, she eagerly explored the iAdapter case and said she really liked it. I told her that I would send her more information about it through e-mail, which I did. She informed me that she has several people who could use the iAdapter case for the iPad.

I thought that because we love the iAdapter for Matthew's iPad2, and it instantly caught the eye of his case manager who really likes it, I would share it here with anyone who might want to explore it more.

And, if you know about (or have borrowed from) a lending library in your state, please consider sharing that information here by leaving a comment (or send me an e-mail) because it could help someone else become aware of a very valuable resource. Thank you very much.

*Note: After we purchased the iPad2 for our son, I found AVPlayerHD, a great app that allows me to easily upload and convert videotapes of his music therapy sessions  (from my camera)  to his iPad2!

What protective case do you use for your child's iPad?

ACC ADULTS - e-mail support group

The ACC Adults e-mail group is now available to any Adult with ACC who might have an interest and want to join.

Are you an adult with Agenesis of the Corpus Callosum?

Would you like to connect with other adults who have ACC and share in discussions and topics that pertain to living life as an adult with ACC?

I invite you to join the ACC Adults e-mail group.

From time-to-time I am contacted (through this Agenesis Corpus Callosum Blog) by adults who have ACC who are looking to connect and have contact with other adults who have ACC, who can relate to them.

I usually suggest the ACC Listserv e-mail support group, which is for everyone who has an interest in ACC--(parents of a child with ACC, adults with ACC, caregivers, grandparents, family members, professionals).

I also suggest the National Organization for Disorders of the Corpus Callosum (NODCC) because they offer an "Adults with DCC Program" (Note: you must join the NODCC to access their adult program).

Sometimes though, there are some adults who seem to be looking for a location where they can easily find and connect with other adults who have ACC to share their thoughts and feelings about living life as an adult who has ACC. I wanted to address that issue and try to create an avenue. So that is why I decided to create the ACC Adults e-mail group.  This group was created to help you find and connect with other Adults who have ACC (or a corpus callosum disorder) for the purposes of networking, discussions and support.

ACC-Adults began on May 1, 2012 and I'm excited to tell you that so far there are several new members, and it is being filled with lots of new messages.

Hopefully the group will continue to grow and will become an active and helpful place for private discussions and support between adults who have Agenesis of the Corpus Callosum.

All adults with ACC are welcome to join the ACC Adults group and read what the other adults who have ACC are posting in the group. Then, you can choose to reply to the messages, or you can post a new message, regarding a topic of your choice, and have an opportunity to interact with other adults who have ACC.

There is an "Introductions" message in the ACC-Adults group so you can reply, tell a little bit about yourself (for the other adults with ACC members to read), and you can also post a link to your blog and/or your Facebook page, if you like.

In order to stop spammers from joining the ACC Adults group and posting spam/junk mail messages, there is an approval for new ACC Adult members who join.

The ACC Adults is a private group. When you join, and are a member of ACC Adults, your discussions are not viewable to the public.

Only members of the ACC-Adults group will be able to view and respond to the messages.

I believe that it is extremely important to bring about awareness of other ACC support group options that are available for adults who have ACC because people differ in terms of the type of ACC group that best fits their particular needs and their comfort level.

It can also be nice to have a few options to choose from. Plus, having a variety of support group choices can aid in helping you make additional contacts with more adults who have ACC and offers even more opportunities for networking, socializing and support.

ACC SUPPORT GROUPS AVAILABLE:   


NODCC - "Adults with DCC Program"

The National Organization for Disorders of the Corpus Callosum states: "The goal of this program is facilitating social connections and social support between adults who have DCC." If you would like to participate in the Adults with DCC Discussion Board, you need to fill out their application and you are required to be a member of the NODCC. This Program is a private discussion board that is only for approved "Adults with DCC"

ACC-Listserv e-mail support group

The ACC Listserv is the largest and most active ACC group with hundreds of people from all around the world who have an interest in ACC (or a corpus callosum disorder). They discuss a wide variety of topics dealing with ACC. The group consists of many parents who have a child with ACC, adults who have ACC, grandparents, family members, and others. You can post a note with your questions, concerns, or anything that you would like to discuss about ACC and you are sure to receive input, suggestions, advice and help. Everyone is welcome to join. Adults with ACC who contribute information in this group offer so much hope to so many parents who have a child with ACC.

Please be advised that I was recently informed by Sarah M., an adult who has ACC, that there are indeed some other Adults with ACC groups. I will share with you the information she provided...

Sarah wrote:

"There are many groups for Adults with ACC, we have a Yahoo Chat every month or so (can be found on facebook, "ACC WEB CHAT", for adults with ACC only. Also there is a "Young Adults and Adults with a DCC" group as well. Both groups are very active, and run by adults with a DCC. There is also a program through the NODCC for Adults with a DCC. Adults with a DCC (ACC) are also active on the listserv, as well as the other facebook groups. If anyone has any questions or if an adult with a DCC has questions about getting involved feel free to find me on facebook "Sarah R. Mellnik" or email me back here at" smellnik99@aol.com

I asked Sarah for direct links to the Adults with ACC Facebook groups she mentioned (because I don't use Facebook - but wanted to provide the links here for easy access to anyone who might be interested).

Sarah replied:

"The groups can be found by typing in "ACC WEB CHAT" or "Young Adults and Adults with DCC". I dont have the links to them. We are always excited to welcome new adults with a DCC."

UPDATE (new info)

Sarah wrote, (after this post was published):

"I found out how to get the links to other groups with a DCC. So here they are,

Young Adults and Adults with DCC:
https://www.facebook.com/groups/138724776192081/

ACC Web Chat (Facebook group but we chat in yahoo conference chat): http://www.facebook.com/groups/243883758737/

...if you don't have facebook and would still like to check out the chat on yahoo just let me know and I'll get ya the info."

Sarah also wrote:

"We connect at the conferences and then throughout the year we connect via facebook, and webchats. Facebook is probably the best way for any new adult with a DCC to connect with the rest of us."

Hopefully, these different ACC Adult support groups mentioned will bring about greater awareness of the options available, and will offer Adults who have Agenesis of the Corpus Callosum the opportunity to explore one or more avenues to find other Adults who have ACC and connect with each other in meaningful, positive ways.

Join ACC Adults e-mail group (for Adults who have ACC)

Meet Joe - An Adult with ACC

I am writing on behalf of my son Joe who is 19 years old now. The responses are a collaboration of our combined responses.

When did you find out that you have ACC? How old?

I found out that he had complete ACC at the time of birth. I had complications, but they were unidentifiable until he was actually born, at which time they did a scan of his head. It was then confirmed. I did not actually let Joe know until he was about 15 years old. At the time I was told, there was not much information available regarding ACC. I was told by doctors that there were cases with partial ACC where the child experienced developmental delays and/or seizures. We were at doctors for the first three years testing and looking out for the worst. Thankfully, there was nothing remarkable happening. Nothing that needed immediate medical attention.

What did you struggle with in school?

Joe had problems that were evident in preschool. He was extremely attached to family and expressed no desire to go to school. Once he was enrolled, it was a teacher in first grade that suggested I take him to a public school where there would be more resources to help with his education (he was in a private school). Once I switched him (mid-year), he was tested, but they could not justify additional help. It was not until we moved to a different school district (in 3rd grade), that his teacher identified A.D.D. Joe did not have the hyperactivity that is usually associated with A.D.D, but he was very disorganized. This lasted throughout all of grade school, where turning in schoolwork was the biggest challenge. Once he got to Jr. High, he was placed in an "emotional disorder" class. That was his first opportunity to excel a bit more. Once he went on to H.S. he was also placed into an "emotional disorder" class that helped throughout all four years. Although the schools knew of his ACC, that was never taken into consideration. All help was really based partly on his A.D.D., and associated struggles.               

What did you enjoy most about school?

There was nothing really enjoyable about grade school. He pretty much hated the fact that the teachers were unable to assist him, or understand what he was feeling. In his words, they made him feel as if he were a "stupid, slow kid". The other children bullied him constantly. The better years were in Jr, and H.S. where the teachers were more understanding and motivating. He started to read books, and found interests in reading. He also enjoyed some math.

Did you struggle with social skills in school?

Yes, again, there was nothing enjoyable related to grade school. Socially, even Jr. High was a little tough. It was not until H.S. with a whole new crowd that he was able to make some new friends. Not too many, but due to the fact that Joe is grounded, and that the confidence he has with his family has somewhat transferred, he did better and has managed to keep some friends. Joe also attended church groups, and trips (with the same group of children since 3rd grade), but was not very outgoing. The Pastors and others at the church were instrumental in helping him get out of his shell during the trips. He had no problem bonding with older people, and again with older family members.

Do you struggle today with social skills as an adult?

Joe is not very outgoing. With family and close friends, he is fun and outgoing, but not much past that. He has cared much for grandparents since a young age and was always a favorite for that. He is very comprehending and warm at heart, almost like an old soul, but again, not too much with people his own age.

Did you attend a mainstream classroom?

This was pretty much explained in "school struggles".

Did you receive Special Ed resource help?

To a certain extent, and again, it was most in relation to the A.D.D. Joe took medication from 3rd grade through the end of Freshman year for A.D.D. He also took some anti-anxiety meds for a couple of years, but my feeling is that is was mostly due to the fact that he was having such a difficult time socially. He also had to see a Psychiatrist to dispense the medication, but as he grew older and started coping with the social issues (end of Jr. High and HS), we found no need to continue.

Can you ride a bike or drive a car?

Joe had an extremely difficult time learning to ride a bike. He first could not do it alltogether, but then after he learned, he could not start off. He finally got it at about 15 years old, when he wanted to go out with friends and he felt pressured to learn. As for driving a car, the A.D.D and obsession with driving video games helped out much there. Joe learned how to safely drive a car at 16. He got his license at 17 and has been an excellent driver since.

Did you attend college? Did you get a degree?

Joe was told that he would be able to attend college, but only if he were to just focus on one, maybe two courses per period. Towards the middle of Sr. Year, Joe approached me with the thought of joining the military since he read much on armory (books). At first I was hesitant, but he convinced me. I agreed to him joining, but I had a preference as to the area, or section. Joe was told he had to lose about 40 lbs to make weight and study for the ASVAB (Armed Services Vocational Aptitude Battery). It has been a long struggle, but Joe lost all the weight and studied. However, I think the largest obstacle is fear of being on his own. I would not necessarily say that it is fear of going, but more of not being around family.

Now...

I noticed that there is so much now on the internet related to ACC that was not there before. I wish there were more related to adults but some of these stories on here have still given some insight. The main difference is that Joe is otherwise a very healthy individual. His eyesight is better than 20/20 and he loves to run, and weight lift now. He still loves reading on weaponry and volunteers (with adults) at the church service weekly.

We wonder if/what there is anything else to face, or if there are cases that may be more similar to his. He is still very shy with people he does not already know, but working at becoming more outgoing.

Vilma M
Illinois


I am grateful to Joe and his mother, Vilma, for contributing Joe's personal ACC story and for making it available here on the ACC blog for others to read. Thank you very much Joe and Vilma for taking the time to touch the lives of other people.

Like Joe's mother wrote earlier, I also "wish there were more [information] related to adults" [who have ACC].

It is always very interesting and helpful to read more about adults who have agenesis of the corpus callosum. Their unique input and inside perspective is invaluable.

I am so happy that Joe's mother contacted me and expressed their two-fold desire to tell Joe's Story. 

Joe's mother, Vilma, expressed an interest in hearing from other families who have a grown adult son or daughter with ACC who have similarities with her son, Joe. 

If you would like to contact Vilma, please leave a comment here for her. 

In addition, if you would like to post a note for Joe in regard to his ACC Story, please leave a comment for Joe. 

I know that they would enjoy hearing from you.

If you are an adult who has ACC or a corpus callosum
disorder, do you want to share your story?

Each person is unique. Every story is welcome and
every story is worthy.

I would love to hear from you. Please send me an e-mail

ACC & Moms-To-Be Story #13

I am incredibly thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

I believe that every story told will ultimately
reach out and touch the life of someone else in
very special ways.

Christina, the mom of an adorable baby girl,
expressed a desire to share her own story.

I am so grateful to be able to include Christina's ACC
Pregnancy Story here.

Thank you very much, Christina. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to thank you from my heart for your willingness
to express your story in words and for your desire to reach out to help others and offer hope.

"The Story of Our Little Superhero"


I should start by saying this is still very hard for me to write, but I would like other mothers to benefit from my story, as I have benefited from theirs.

My daughter was born on September 2nd 2011 at 7:07pm.

My daughter's pregnancy was completely planned--we wanted to become pregnant by a certain date, or we would wait a while for my husband to finish his schooling. I found out I was pregnant, and we couldn't believe it worked. I had a great pregnancy early on, with the exception of a TON of morning sickness. All I could think about was whether we were having a boy or a girl, how I would decorate the room etc. I took all the precautions--never took a hot bath, took prenatal vitamins, avoided certain foods and started sleeping on my side right away. I had many Moms tell me I was overreacting, but I didn't want anything to go wrong. I had no clue about the uphill battle we were about to face.

At our 20 week ultrasound, we found out we were having a baby girl. We left the ultrasound room, and were told to wait in the lobby. We didn't think much about it, and started texting and calling family and friends to tell them the news. Finally, a nurse came and asked us to follow her to a conference room. Right away, I knew something was wrong. We sat down, and she told us that our baby was "missing part of her brain", and that we would have to "start seeing specialists right away" and that the ultrasound techs "never got anything wrong". I started crying so hard, I was almost screaming. I never met this nurse, and she was telling me the worst news of my life. She even told me "look at me, you're going to be ok"... like she had any idea of what I was going through.

My husband and I sat there and cried and even told the nurse to leave the room. I had so many thoughts going through my mind--would I lose the baby? Why did this happen to me? What does my daughter's future look like? I never felt so horrible in my entire life. The nurse made me feel as if our only option was to terminate the pregnancy, which made me just feel sick and the lowest ever. The nurse took us to see our doctor, in order to answer any questions. While waiting to see my doctor, I heard other babies crying, and I kept thinking "Will I be able to hear my baby cry?" and it made me fall apart. My husband had to put his hands over my ears so I wouldn't hear the other babies. I work at a hospital that serves children with severe mental disabilities. Needless to say, my mind was going crazy. Our doctor was able to explain what was going on in a clearer and more positive manner. She told us the ultrasound machines may have missed her corpus callosum, and that we need to have a follow up appointment with better ultrasound equipment to check us out. She even told us that in her professional experience, she has worked with 1 baby who was diagnosed with ACC and that the baby turned out to be a happy, healthy baby. She explained to us what ACC was, and what we had to do from here on out.

I remember going home, and feeling completely numb. I didn't want to talk to anyone but my husband. We didn't know what to expect, think or feel. We ran through every scenario, and nothing really made me feel better. My doctor told me not to Google anything, and I tried really hard not to. But of course, I did and only found stories detailing the worst case scenarios. I kept clinging to the hope that the ultrasound machine made a mistake, and that we would be told everything would be normal. I didn’t sleep at all that night.

The next day, we met with a perinatologist to do another ultrasound. We found out that he also did not see her corpus callosum, but emphasized that he saw a "little line" that may be her corpus callosum, and that we wont be sure until we get an MRI. The doctor also told us that her ventricles were enlarged, and the MRI would give us exact measurements. I felt like I was hit by a truck, and that everything I planned for was gone. The doctor reassured us and told us that she doesn't look like she has other abnormalities, which is a good sign. He didn't want to do any genetic testing until I had the baby, as it might induce me and set off an early birth. We were to come back to this doctor in six weeks for another follow up.

Although I was extremely sad, anxious and tense, I kept having hope and staying positive by feeling my daughter's kicks. She kicked so much! She would even wake me up at night! Every time I felt her move, I kept telling myself that this was her way of saying "Mommy, I'm OK".

During the rest of the pregnancy, I kept clinging to the hope that our daughter did not have other abnormalities and that if I worked with her, she would be OK. We met with so many specialists--perinatologists, neurologists, neonatologists. I tried everything I could do to learn more. But, like most Moms, I couldn't really find anything.

My husband took a legal internship 2 hours away from me, making things a bit worse. At about 26 weeks, I started noticing my hands swelling. Just to be safe, I had a nurse at my work take my blood pressure and it was pretty high. I called my doctor, and she told me just to go home and relax. Of course, I couldn't. I went home, tried to relax, then went to a grocery store to get my blood pressure checked and it was way, way higher. I called the doctor and I was to go to the emergency room immediately. My sister in-law picked me up, and as much as I didn’t want to be admitted, we were admitted right away.

My husband was able to rush and meet me at the hospital, and luckily everything was fine. I was diagnosed with pregnancy induced hypertension, and from there until I was due, I was to have 3 appointments every week with the perinatologist to monitor my amniotic fluid levels, check the baby's heartbeat and make sure she didn't arrive early. I was also put on bed rest for 5 days.

On top of everything else, I now had high blood pressure. I felt like a failure, like I was not meant to be a Mom. Like this was nature's way of telling me that my body was not meant to have babies. To this day, I still feel like this. I still run every scenario through my mind to try and figure out why this happened--was it the car accident I was in at 10 weeks (doctor says no). Was it because I took too hot of a bath? Did I eat something wrong? This still runs through my head, despite all of my doctor's reassurances.

When I went in for the fetal MRI, I was extremely nervous (and hungry), and was anxious to see the results. When I took the fetal MRI, I was so nervous to see the results. The MRI itself was not as bad as I thought, as I was able to have my husband stay in the room with me, and I had my family there for support.

About 4 days later, we met with our doctor and the MRI showed that my daughter was for sure missing her corpus callosum, and that her ventricles were still enlarged. She was definitely diagnosed with agenesis of the corpus callosum.

I remember hearing this for the first time, and I just cried. I cried, and I was so scared, as I didn't know what any of this meant. I remember hearing a song on the radio about love and heartbreak, and crying hysterically because I wondered whether or not my daughter would ever fall in love, or experience life like a normal girl. The most frustrating part (and continues to this day), is that nobody could tell me exactly what it meant for my daughter. I would have to wait and learn.

Aside from all of the appointments, and constant worry, everything else was going OK. My daughter was presenting feet-down, so we were planning on having a scheduled c-section on September 10th. However, on August 26th I felt somewhat of a tear in my lower abdomen. I thought my water broke, but I was wrong, and later found out it was my daughter turning! We went in for an ultrasound and found out she was head-down. We were now going to have a vaginal birth. This little girl had a mind of her own! My blood pressure continued to rise, so my doctor decided to schedule an induction. After scheduling my induction, my doctor gave me the kindest words a pregnant mother can hear--"You've done your job."

My daughter was born on September 2nd 2011 at 7:07pm, 5 lbs 0oz, 18.8 inches. I was in labor a total of 36 hours. After pushing for 2.5 hours, my daughter arrived with the cord wrapped around her neck and was ghostly white due to lack of oxygen. She was already scheduled for a NICU stay due to her diagnosis, so the nurses and neonatologist were already on hand ready to take her to the NICU. The original plan was that I would be able to hold her for a while, then proceed to the NICU. However, because of the cord, she was quickly shipped away. The first words I heard after she is born is "we have to resuscitate"... I never felt so alert in my life. I was not exhausted, or tired, all I wanted to do was know what was going on. I saw her for a few seconds before she left. My husband quickly followed the NICU doctors and nurses, while my Grama waited with me to get stitched up and recover. The entire time I just remember wanting everything to be over so I could see her. However, the nurses wouldn't let me go to the NICU until I spent 2 hours in recovery.

When I finally saw her, I was devastated. She was attached to a breathing machine, with the mask covering her entire face, and cords attached all over her body. To this day, I can't look at the pictures without crying. However, at the time, I found my inner strength and held it together for my baby. I read to her that night, and slept in my own recovery room while my husband slept in her NICU room (we had our own individual NICU room).

We were in the NICU for a total of 5 days. My husband slept there 2 nights and I slept there 2 nights. We had a system worked out with my mother in-law so that my daughter was never alone in the NICU. I am eternally grateful to my mother in-law for this, as it was really important to us that she was never alone. Although the hospital staff was very nice, I couldn't bear the thought of her having a volunteer hold her, or have a nurse feed her.

Going home was exciting! We were sent home on a BiliBlanket, which made things difficult, but we were happy to be home.

My daughter is currently in the Birth-to-Three program, receiving services for Physical Therapy. At 6 weeks, her motor skills and fine motor skills were only in the 1 percentile. We don't know if this is due to her size (she was born small, and therefore lacked the muscle development), or the ACC.

My daughter is now 7.5 months, and she is doing great! She laughs, smiles and lets you know when she wants her way! I couldn't ask for a more perfect baby. She still receives weekly physical therapy, but so far, has been on par developmentally. She will see a neurologist every 6 months to check her development and to see if any hydrocephalus appears (she had enlarged ventricles in the womb, but have since continued to go down). Some things I have noticed is that she always picks up new skills with her left side first--she then develops the skill on her right side a few weeks later. The neurologist did not have an explanation for this, but said it is no cause for alarm.

Some days, I completely forget that she has ACC. Other days, I can't seem to get it out of my mind. She seems like a "normal" baby now, but I worry that down the line, she will start showing symptoms (as a lot of children with ACC do). I worry that she won't have any friends, or won't be able to do some of the things we did as children. But I’ve learned to not dread on the "what ifs", as I won't be able to enjoy the beautiful baby in front of me.

We also constantly debate whether or not we should tell our daughter, and others, about her diagnosis. What if she turns out "ok", and uses her diagnosis as a crutch? What if she finds out later down the line, and learns to resent us for it? I also hesitate telling others, as I don't want them to treat her differently, or tell me stories of someone they knew with ACC. There are children at my work who are diagnosed with ACC, and for this reason, I won’t tell my coworkers, as I worry they will compare my daughter to these children.

Despite the difficulties, I am thankful that I have such a beautiful, intelligent, amazing little girl. I love her smiles, her cute little toes, her LONG, curly, crazy, dark hair, her beautiful blue eyes. She's going to change the world someday, and I'm going to be there the entire time, cheering her on!