Friday, October 30, 2009

Better Late than Never

One of my very best friends from a long time ago called me last week to talk about her baby who is undergoing testing for medical and developmental issues. Understandably, she is upset, sad, tired, discouraged…all the normal feelings you have when you find out your child has special needs.

In the middle of her sharing about her difficult time, she apologized for not being there for me when I was going through the same thing several years ago. She told me she never understood what I was going through until now. She wished she had been a better friend to me back then.

I was dumbstruck when she said it. I kind of blew it off and told her not to even give it a second thought.

And I meant for her to not give it a second thought. I, on the other hand, have given it many thoughts. I even cried when we got off the phone (and remember I am not a crier.) For someone to say what she said to me meant a lot. I have no anger or bad feelings to anyone who does not understand what we went through in the beginning and what we go through every day. The acknowledgement from my friend helps to validate my experience, my feelings and situation. It helps me feel normal.

There are times when I have hurt thinking about things I never dreamed of when it came to Ben, and I have felt alone, misunderstood and psychotic. The feelings can be deep. And it seems like no one could possibly understand. On the other hand, it is frustrating and confusing when they do not understand.

For someone to truly understand what another person is going through, they have to be willing to feel those painful emotions. And who really wants to go there if they don’t have to.

So I say to my friend, thank you for sharing your feelings with me. It has made me feel stronger, more loved and better understood. Your honesty is the best support you could have given me.

Monday, October 26, 2009

My Kid Won’t Learn from Your Kid.

Many times during our life, if we are truly challenging our own personal growth - we will come face-to-face with our own prejudices. I have had several in my 39 years – one of the first was when I moved to the south when I was 17. I had some fairly strong stereotypes about Southerners – and very quickly at the university I attended, those stereotypes were laid to rest.

In my more recent history, I was struck by my prejudices about children with special needs. When first researching classroom environments for Ben, I definitely had the notion that he would only benefit from being in an inclusion class. There are many reasons parents want their child in inclusion – it is more “normal”, curriculum is rigorous and if your child is going to learn from their peers, you want those peers to be typical.

When it was all said and done, Ben’s best placement was in a self-contained classroom, a class with a teacher trained in special education with two assistants and 9 children, all with differing special needs.

Looking back now, I ask myself, “How could I have been so narrow-minded?” By discounting what children with special needs could teach my son, I am at the same time taking away Ben’s gifts. I know our Ben can offer friendship, love, courage, strength, determination, warmth, kindness, laughter and patience to his classmates.

It is a family’s decision to place their child in the best school setting – different ones work for all types of individuals. My only question for anyone facing this type of decision is, “What negative thoughts, fears or stereotypes do you have that could be getting in the way of making the best decision possible for your child?” If you have, at the very least, examined yourself, you are headed in the right direction.

Sunday, October 25, 2009

Tonsil Update

Ben is home and recovering very well from his surgery on Friday. I am physically tired and emotionally drained from the entire experience. I think he feels better than I do from the amount of energy he seems to possess.

Thank you for all your well wishes, prayers and good thoughts - Ben received all of them and perhaps that is why he is ready to party while we are ready for sleep.

Good night!

Wednesday, October 21, 2009

Ode to Tonsils - Guest Blogger

Aunt Olivia & Ben
Ode to Tonsils
Think of all the organs used in our creation,
That are so easy to get rid of with a simple operation.

Tonsils, gall bladders and our extra kidney,
Are not as important as say our heart, lung and knee.

Adnoids are up there with things that are purpose-free,
Hopefully Ben's didn't grow back, that will add to the doctor's cutting spree

This Friday, Ben's tonsils will be last seen,
Hey, what happens to the thing that hangs in between?

Aunt Olivia

Ben is having his tonsils removed on Friday, October 23. His deviated septum and other nasal issues will hopefully be fixed too. Please keep him in your thoughts and prayers.

Monday, October 19, 2009

ACC is Not Just a College Athletic Division

After two brain scans, genetic testing, three neurologists, a developmental pediatrician and Duke Children’s Hospital, we gave up on the idea of a label for Ben's disability. About 25% of children with special needs supposedly have a “non-diagnosis.” We were fairly comfortable in this category. Plus the searching was getting expensive, disappointing and tiring.

On our fourth neurologist, we hit the jackpot. I brought Ben’s 2 MRI scans with me. Before seeing us, the doctor reviewed them. The neurologist walked into the room with a few brochures and said, “Ben has hypoplasia of the corpus callosum.” The doctor explained about the organizations involved in research and support, and she suggested we sign Ben up for the study in California. I read the brochures and sure enough, Ben fit.

Hypoplasia of the Corpus Callosum in plain language means the bundle of 200,000 nerves that connects your left and right brain (corpus callosum) is thin (hypoplasia), about 60%.

For some reason the other neurologists noticed the thin bundle of nerves and told us about it, but did not acknowledge it as the cause for Ben’s delayed development. No one ever spoke about the ACC Network or the research in California. To this day, I wonder how so many doctors were unaware of ACC.

It seems that typically functioning people could have a missing corpus callosum, called Agenesis of the Corpus Callosum or ACC. Others may have partial ACC, or p-ACC and again be functioning normally. It is because more MRIs of the brain are taken nowadays that we even have this information.

The adults and children diagnosed with some form of ACC (agenesis, partial or thin) may have other disorders as well, complicating the ability to figure out what exactly ACC affects. Some people with ACC may develop at a slower rate than their peers and may have small delays. Others have severe physical, communication or cognitive delays. So there is no set prognosis, and there is not enough research on ACC. Ben is a part of the study in San Francisco where they are doing extensive research.

Ben’s neurologist suggests that he probably has some other genetic disorder in addition to the thin corpus callosum. Right now, we have made the decision to direct our financial and emotional resources toward intervention strategies and therapies, rather than expensive and sometimes inconclusive genetic testing.

Ben’s development is severely delayed; however, he makes steady progress in most areas. Ben uses a walker at school to get around and picture cards to make decisions and communicate his needs. His receptive language is far superior than his expressive, although he makes his needs known one way or another. As with any family with a child with special needs, we take everything day by day, celebrating the successes, high-fiving the progress and moving past the failures...nope no failures here, just places that can be changed, improved and made better. ACC or not, Ben is our kid, that's his main label.

Included are links to some ACC sites. They will do much better job of explaining the details of the disorder and its intricacies:

Friday, October 16, 2009

One Lovely Blog Awards

In keeping with the tradition of the "One Lovely Blog Award" and passing the torch to 15 other blogs, here are my first four. I took my job seriously and read through many blogs, probably too many because I had a nightmare about blogs in the middle of the night.

So after careful reading and consideration, I would like to pass "One Lovely Blog Award" onto the following four sites:

I chose these blogs because I think they have a writing style that is open and honest while being informative. Try them out!

The rules, upon receiving this award, state that you must:
1. Accept the award;
2. Post it on your blog together with the name of the person who has granted the award,
and his or her blog link;
3. Pass the award on to 15 other blogs that you've newly discovered; and
4. Contact the bloggers to let them know they have been chosen for this award.

I will pass on the remaining 11 sites in the next few weeks.

Thursday, October 15, 2009

Risky Business

Two weeks ago, I read a website about a little baby who has severe facial abnormalities that are fairly uncommon. The parents, who seem to be amazing advocates, were able to introduce their child to the town with an article in the local paper about her disability. The parents hoped to make introductions simple – they said, we’d love for you to come and talk with us, but we welcome a wave hello too. They were positive and open, and they gave easy instructions for friendly neighbors on what to do if they were seen out and about town.

Most people do not know how to react, what to say, where to look. So rather than be uncomfortable, they just ignore the whole situation, which comes off as being rude and ignorant. Or if they do take the risk and talk to the family, they may ask a question that may not be taken well by the parents.

When I was in college, I roomed with someone from St. Croix. My first comment to her parents was, “So your daughter is an international student.” Her wonderful parents did not laugh at my ignorance, just informed me that St. Croix is part of the US Virgin Islands. My question was handled so well by them. They did not make me feel stupid or dumb. Cheru came to be one of my dearest friends, and she allowed me to ask all types of crazy questions about her hometown and being Black.

My friendship with Cheru helped me to form relationships later with people very different from me. It also laid the groundwork for me to be accepting of people who ask questions about Ben when we are in public. I am able to answer their questions, trusting that their curiosity comes from a caring place.

Not only do we as the parents take risks, but those who care enough to open their hearts to a new experience take a risk too.

Tuesday, October 13, 2009

It's a Small World, After All

When I started this blog just a few short weeks ago, I did not expect to find a community of support. To tell you the truth, my knowledge of blogs was extremely limited. Last week, I looked up blog etiquette to make sure I was not offending anyone with what I was writing, saying or posting. I have emailed my cousin in desperation looking for technical advice. So I am very new at this.

Today, I received this "One Lovely Blog Award" from a fellow blogger. I am touched. I am happy to be part of this group of warm and fuzzy people who support one another and help get each other's messages out. And the funny thing is, we are basically strangers to each other, until we read a blog and identify with someone through their funny story, sad experience or goofy mistake. I know it is a cliche, but "It's a small world."

When you receive this award, there are rules to follow (and I love rules):
  1. Accept the award;
  2. Post it on your blog together with the name of the person who has granted the award, and his or her blog link;
  3. Pass the award on to 15 other blogs that you've newly discovered; and
  4. Contact the bloggers to let them know they have been chosen for this award.
Bendigo at bestowed this award upon me, and I accept this award. Thank you for your kind words and loyal reading.

Over the next few weeks I will take the time to give out this award to 15 other worthy bloggers.




Monday, October 12, 2009

Advocate vs. Adversary

Early in my career as Ben’s mom, there were some situations where I was adversarial in my responses and reactions to circumstances where I thought Ben’s needs were not being met. With guns loaded, ready to fire, I would take out anyone who I thought might not be giving Ben the best possible care. Instead of making the situation more positive, I may have alienated the people who could really help me.

I realize now that almost everyone wants to provide the best they can for Ben or any other child that has a special need. Like with anything that is sensitive and very personal, misunderstandings happen easily and can add to an already emotionally charged issue. The parents have emotions about what they expect for their child and others have emotions about the unknown. Fear, uncertainty, worry are all floating just beneath the conversations you may have when you are asking for assistance for your child.

Being an advocate means partnering with others, building relationships and being aware of the underlying emotional obstacles everyone, including yourself, may have. It also means taking initiative, doing a large share of the work and showing your appreciation over and over.

Assume the people around your child want to help, are knowledgeable and can offer their own ideas based on experiences they have had. Sometimes change may happen slowly, but that could mean you have more people on board, the action is the right one and everyone feels good about what has been done.

Thursday, October 8, 2009

IEP Meetings

If you are a parent of a child in school and that child has a special need, you have experienced the IEP – Individual Education Plan - meeting. Endless information about IEP documents and meetings can be found at conferences and in magazines, books and websites. Unfortunately, there are many horror stories about IEPs. Anxiety, fear and dread would probably be on most people’s list of how they feel about the meeting.

I do not love the IEP meeting, but I do not dread them anymore either. I believe that this meeting can be successful – meaning your child’s educational goals are met with little stress and anxiety. These suggestions are based on what I’ve learned from researching and participating in IEP meetings for the past three years.

Bring Food. Donuts, muffins, cookies and juice and/or coffee make friends. Food puts everyone in a good mood, and it makes the atmosphere less tense. And in some cases, it may serve a very practical purpose - teachers and other school staff do not get much time to eat during the day, especially during IEP time. Everyone will appreciate your effort.

Bring a Photo. Set a framed photo of your cutie pie on the table for all to see. Before the meeting starts or when you have the opportunity to introduce yourself, simply say, “We are all on the same team, and here for the same reason, to make sure this child gets the best education he can get. This photo will help us to remember this.”

Bring your Posse. At an IEP meeting, the school is required to have several people there to represent many different aspects of the educational system. You could walk into a room with 5 or 6 school members and feel intimidated. Bring a friend, a husband, past teacher and/or private therapist. The people you bring may never have to speak up, but you know they are there for you and will provide support if needed.

Do your Homework. Look at the Wright’s Law website, read about what to expect in the meeting, review current laws and the draft IEP, attend any local workshops about IEP’s and write down questions to ask. Know what is most important to you in regard to the IEP. What goals will you not budge on? What services are you not willing to give up? What changes do you want made? What do you want to stay the same?

Take the Pressure Off. I made the mistake early in my IEP experience of bringing my one-year old with me to a meeting. I was stressed trying to take care of him while trying to understand what the school was saying about Ben. And I had to rush things along because one-year olds don’t do 2 hour meetings. So, arrive to the meeting early, get a babysitter for any little ones and clear your calendar for many hours.

Adjust your Attitude. At a Wright’s Law Conference I attended a few years ago, they stressed the importance of the way in which you present yourself at the meeting. Entering the meeting feeling angry, frustrated or defensive will only set the tone for a stressful meeting, sometimes placing the school staff as the “enemy.” Another common mistake parents can make is to come into an IEP meeting with the “know-it-all” attitude. An open mind and a positive disposition can help people hear what you have to say; especially if you have done your homework and can discuss points intelligently.

Tuesday, October 6, 2009


Ryan and I spent two nights away a few weekends ago – without the boys. We had not done that in two years, and even then, I was 7 months pregnant, so technically we were not alone. We were giddy like school girls (to steal a saying from Ryan), so giddy that we got lost on interstate 77 for at least an hour (that’s what we are willing to admit.) We were headed for Ohio and almost made it to SC. In our defense, we were talking and laughing and relishing in the fact that no one was seated behind us in the minivan.

One thing that we discussed was how calm and at ease we were with each other, so calm we never paid attention to which direction we needed to go when we left the gas station. We were together for nine years before we ever had children – so we had a lot of time alone, and I know we never stopped to appreciate it. Nor could we have.

When I see couples who are about to have a baby, I want to say, “Go out, spend time alone with each other. It will be years before you will have a week alone.” But you can’t do it – people would look at you very strange.

We never appreciated the time we had alone, or the easiness of living with two incomes and very little stressors. We never understood the importance of it then. But we could not. We had not lived with three busy boys and the rest of life’s challenges.

Perspective is a funny thing and it affects so many aspects of our lives. I am not sure we comprehend the importance it has in our short and long term visibility.

You can’t teach perspective.
When I was about 25, I remember my Dad telling me that when he was my age, he knew nothing. “I was just a child” may have been his exact words. I think about that comment often – for some reason it has stuck with me. At 38, almost 39, I know so much more about myself and I could impart my wisdom on many others, but isn’t that what life is for – to love and learn, to make mistakes, to hurt, to enjoy – and then look back at it all, realize that you survived and hope that you can use everything that has become a part of you to go ahead in your life. Perhaps my Dad was trying to impart his wisdom on me in that one line, and did it simply by telling me that even he still had a lot to learn.

Perspective can be a wonderful thing.
When Ben was 8 months old and we had just found out about his delays, we also found out that he needed one of those helmets, because his head was flat from not being able to hold his little head up. We were horrified, devastated and distraught. I could not believe that my little baby would have to wear one of those things. He actually had to get two, so he wore it for 7 months. Now, I cannot even remember that he wore one until I see a photo and comment on how cute he looked.

Being reminded of the past can change your perspective.
I jot down things the kids do and say whenever I think about it. I may write down “Summer 2009” and then list what each son has done that is memorable. Like when Logan stopped calling Ben, “Nen” and started calling him “Ben.” Or when Sean said his first word, “beep-beep.” Or when Ben sat up for the first time at over 3 years old. That was only three years ago! When I read those notes and count the years on my fingers again and again to make sure I am correct in my math – I am amazed. Look at how far he has come – he uses a walker to get anywhere he wants, he gets himself to the dining room table and waits patiently in the chair for someone to bring him something to eat.

When I get down on Ben’s progress, which is not often because if you know me, that’s not my personality, I simply look back at photos, video or notes to see what this kid has accomplished. He works hard and has the determination and the will of several people.

Ben will change anyone’s perspective.

Thursday, October 1, 2009


Whenever I enter a new environment (like college, new job, PTA) it seemed that knowledge of a new language is needed. I don’t mean Spanish, French or any other foreign language. I mean plain old English with a lot of acronyms and confusing words. People accustomed to this language typically sling it around rarely giving any thought to how newcomers might feel. When tossed strange words from this language that everyone but you understands, you may feel out of place, even isolated and stupid.

Here’s a list of some WAP’s (Words, Acronyms and Phrases) that I have come across over the past several years with the definition, in my own words. If you have some to add, I welcome your additions.

Assistive Technology – This includes all the computer equipment, special devices and technical aides that may be used to assist your child in communicating with others.

Cognitively Impaired – This word seems to be replacing mentally retarded, but has the same meaning without the negative connotation that mentally retarded has become over the last few decades.

DD – Developmentally Disabled. A lot of kids are lumped into this category as a diagnosis when none can be found.

Early Intervention – Children from birth to three years old who qualify based on disability receive services through the county. These services may be free or based on a sliding scale, depending on where you live.

IEP – Individual Education Plan. Once a child with special needs reaches three years old, the school system handles services. An IEP is a legal document developed by the parents and school to guide the child’s education.

IFSP – Individual Family Service Plan. While your child is in the Early Intervention program, they will have an IFSP, a document guiding the services your child and family receive.

Inclusion – In the school system, there are several types of classrooms in which children can participate. Inclusion usually defines a class that has both typical and special needs children. The teacher and/or assistant will be trained to teach this kind of classroom.

Main Stream – This is the same as Inclusion, but for some reason “Inclusion” is the updated word to use.

Medicaid – Based on financial need of the family, this is a government funded health insurance for children and adults who qualify.

MR – Mentally Retarded. These words are still used, but not as often. Severely, profoundly and moderately seem to be used in conjunction with MR.

OT – Occupational Therapist. These professionals work with fine motor skills in fingers and hands, arms and upper body. Their focus may be on eating, drinking and writing.

PT – Physical Therapist. These professionals work with gross motor skills in legs, torso and upper body. Their focus may be on crawling, sitting and walking.

Self-Contained – In the school system, this is a class with all special needs children.

SLP – Speech Language Pathologist. These professionals work with helping people to communicate by talking, sign language, using pictures and/or a communication device.

SSI – Social Security Income. Based on financial need of the family and disability of the individual, this is government funded assistance to be used for an individual’s needs.
This list is by no means the end to this new language. It is a starting point for a new family trying to figure it all out. And when I am at a meeting and some crazy word enters the discussion, I now ask “What is it that you just said?”