special needs

Getting to know The Haines Family, P.A.N.D.A.S, P.A.N.S and a Search for Happiness

There are few "jobs" in this world as difficult -- and as rewarding -- as being a parent. Life and destiny hand you a small human and an unpredictable 18 to 85 years, God willing, to create a kind person and to lay down the foundation for a future that is full of potential and kindness and joy. That in itself is ridiculously challenging and can be incredibly lonely. Factor in a child with special needs and you can feel absolutely alone. I love the idea of supporting other parents and offering a sense of community for those of us who face battles daily and mostly behind the scenes.

Through this new series, "Special Edition", I'm going to introduce you to some of the most incredible parents who are raising kiddos with a little extra something -- an extra chromosome, perhaps, or an extra diagnosis; maybe it's an extra health concern or an extra behavioral setback. These mommas (and dads, too!) are fierce, strong, resilient and willing to give their all and then some. I hope you learn a little bit about them and their children; it is my wish that your eyes are opened and your hearts are warmed. I hope that if you too are facing challenges and difficulties in your everyday life as a parent, that for one brief moment while reading this, you no longer feel alone. Enjoy our new series, "Special Edition."

Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos

Tell us about your family!

Brett, Andrea and Riley Haines (Riley turned 5 in March).

Tell us about Riley! 

Riley is a 5-year-old bundle of energy just like most little boys! He is attending Kindergarten in the fall. He enjoys collecting items of nature (rocks, leaves, etc.). We were raised on a farm and Riley also had access to his grandparents’ dairy farm to learn and help with chores like feeding calves when he is visiting them. Riley is usually interested in any type of farm equipment or machinery; he also enjoys playing with his toy trucks and trains. 

Riley’s personality is happy (most of the time). He’s usually up for an adventure and gets super excited over small weekender trips or a new playground.

What diagnosis(es) do/does your loved one have? Can you break it down for us in super laymans terms? At what age did he/she get diagnosed with this? Would you say this is a visible or “invisible” diagnosis and do you think that makes things more difficult in any way?

Riley is battling an auto-immune disease called P.A.N.D.A.S (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and P.A.N.S. (Pediatric Acute-onset Neuropsychiatric Syndrome). In layman’s terms, it is a disease triggered by strep A bacteria that causes brain inflammation, causing the child to have neuro/psychiatric implications and behaviors.

This is a disease that doesn’t get much attention because there are so many different types of symptoms a child can show that often get overlooked as behavioral or “typical” growing pains. I would categorize this as an invisible disease because to look at him, he seems like a “typical” boy. 

Riley was diagnosed at the age of 4 years old by a neurologist near Baltimore (Sinai Hospital) named Dr. Yuval Shafrir. This diagnosis path was very frustrating because we had seen three other doctors before we finally got answers (we were actually lucky, as many families are still searching). One thing that I have learned as a mother is that you should trust your gut instinct and never stop looking for answers for your child because someone, somewhere has an answer! 

In our journey for diagnosis, I remember feeling like we were getting somewhere with a reason for his symptoms as we visited a different neurologist. That day was so defeating … the doctor took one look at him, and shot questions at me so quickly that I didn’t even have a chance to go over the carefully written notes I had brought along and said he was “fine”. He was having growing pains and ADHD. I was so very upset, I didn’t listen to her though and I am glad I didn’t because we would have a much sicker child on our hands.

Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos

What was your initial reaction to this diagnosis?

I was relieved to get a diagnosis. Many parents are still searching for a doctor that is understanding of this illness.

How does this diagnosis affect everyday life for this child? What are their greatest struggles?

Every day is different depending on his overall environment because anything can kick off the immune system response. His greatest struggles are OCD, controlling his emotions, anxiety, to name a few.

Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos

What do you think is the biggest misconception with your child’s diagnosis?

That one shoe fits all. There are children with this disease who are much worse off than our son. Most people think that it’s a voluntary behavioral thing, but it’s not.

What does an average day look like for you and your child?

We get up and start our day with medication and getting ready for either school or errands. Depending on his overall mood/inflammation level we decide what activities are best suited for us/him. It’s not untypical of a regular household, just on off days he might have to leave school earlier.

Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos
Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos

What areas are the hardest for your child and why? 

I would say school, at this point. He has a routine and change is hard for him, but he’s getting better at retraining his brain with the OCD. 

Holidays and family/friend gatherings are difficult because they are different and harder to cope. It is also VERY frustrating when a family or friend comes to an event and is sick … they don’t understand that it takes him much longer to get better and his brain inflammation gets worse.

How has your life/ your parenting changed because of this journey?

I’m a lot more anxious about school, getting the call from the teacher/office. I’m more used to it now, but sometimes people look at it as a reflection on the parenting skills and it’s so much more than that. I am a lot more patient when it comes to activities, he has to ease into certain things.

Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos

What is your greatest wish you have for your child?

My greatest wish is that even if he does improve or not, that he is able to channel his creative mind to his best abilities…and that he’s happy!

Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos
Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos

If people would like more information on this, where can they find it?

www.pandasnetwork.org and www.sepans.org and are two great resources!

ANYTHING ELSE! Share whatever is on your heart right here, my friend.

I’ve found that I am not alone in my parenting feelings by reaching out to other parents with a child with PANDAS/PANS, but it can get very lonely and immensely tiring trying to constantly prove or explain to people that my child has an illness they cannot physically see.

Wendy Zook Photography | Special needs family, family with special needs, P.A.N.D.A.S, P.A.N.S, diagnosis, family photos

Talking Truths About Down Syndrome: Addressing FAQ’s (Frequently AVOIDED Questions)

I believe so strongly in the power of talking about and educating others on Down syndrome. You can’t fully understand something if you don’t get your questions answered about that subject. And while I love taking in questions about Zach and Down syndrome in general, I also know that there are a lot of things out there that may either be too uncomfortable to ask or you might be worried about hurting feelings or coming across as unknowledgeable asking it. So, I’m here to collect some of those things and share the truth -- the whole truth -- about some frequently-avoided questions about Down syndrome.

Wendy Zook Photography | Down syndrome advocacy, DS advocacy, DS parent, special needs parent, frequently asked questions about Down syndrome

1. What causes Down syndrome?


Here’s the tricky thing: There is no known cause for Down syndrome. In all of the research so far, no connection to the parents, environmental factors or anything else has been linked to causing Down syndrome.



2. What are the chances you have a child with Down syndrome?


Down syndrome is the most commonly-occuring genetic condition. Approximately 1 in 700 children are born with Down syndrome each year in the United States. The only slight correlation to Down syndrome occurring is maternal age and even that may be simply because women are having babies at older ages than previously.

Wendy Zook Photography | Down syndrome advocacy, DS advocacy, DS parent, special needs parent, frequently asked questions about Down syndrome

3. Will people with Down syndrome have a lower life expectancy than others?


The expected life expectancy for someone with Down syndrome has increased greatly over the years, thanks to research and achievements in science, medicine and technology. In 1910, people with Down syndrome only lived to be 20 or so years old. 100 years later, and the current life expectancy has now reached around 60 years old.



4. All people with Down syndrome have the same level of challenges and difficulties, right?


Nope, not quite. There is a wide range of intellectual and cognitive delays and disabilities for people with Down syndrome.

Wendy Zook Photography | Down syndrome advocacy, DS advocacy, DS parent, special needs parent, frequently asked questions about Down syndrome

5. Are people with Down syndrome always so happy and so cute?


Ha, ha! I’d love for you to come hang out with sweet Zach when he’s in a time-out or being especially ornery. Zach -- and all people with Down syndrome -- have the highs and lows of personalities and attitudes just like anyone else. There are temper tantrums in toddlers with DS; there are moments of talking back in youth; there are setbacks and disappointments and as much laughter as there is frustration.

Wendy Zook Photography | Down syndrome advocacy, DS advocacy, DS parent, special needs parent, frequently asked questions about Down syndrome

There is a lot more to share and I hope a lot more questions to answer. Knowledge is such tremendous power.

Getting in our Groove: How We Prep for Back to School

It’s quite possibly the most bittersweet time of year for us here -- back to school. As much as I dread the summers as far as losing my guaranteed work hours and “me” time that’s been gifted to me these past two years, I always wind up loving our summertime magic so much and hate to see it end. This year was no exception. It flew by in a whirlwind of art camps, bowling, vacations, visits and adventures. It’s quite possibly been my favorite summer of even my life so far.

Addie couldn’t be more excited to return to school and start second grade while Zach seems fairly eager to check out third grade this year. Last year, Addie was all about reading and art, some science and math while Zach most loved recess (no surprise), lunch (definitely no surprise), P.E. (no surprises again!) and music.

Wendy Zook Photography, Down Syndrome, Down Syndrome Awareness, Down Syndrome Parent, Back to school, Special Needs parent, Special Needs school plan, inclusion

I don’t know if there’s any kid out there who can super-easily step directly from summertime pools and late mornings and laidback rules to full days of academics and lessons. My kids, especially Zachary, need some transition help for a more successful first few days of school. Here’s some things we do to help them out.

1. Talk about it, talk about it, talk about it.
We spend a lot of time in the last couple of weeks talking about going back to school, repeating our teachers’ names, counting down how many days til school starts and practicing our bus number. You’re likely to find some random Post-It notes around our house with all that info on it, too, just as visual reminders.

2. Tour Time!
Each year, we’ve requested a super-quick and informal meeting with Zach’s teacher and tour of his classroom in the week before school begins. It’s just another great reminder and visual cue for him to recognize the teacher, know where his cubby will be and take in the classroom without 24 other kids running around with a lot of noise. It’s become a part of our spring review meeting process, just planning for this tour.

Wendy Zook Photography, Down Syndrome, Down Syndrome Awareness, Down Syndrome Parent, Back to school, Special Needs parent, Special Needs school plan, inclusion

3. Get your stuff together
We get all of our school supplies in early August and pack it all up in backpacks (that we clean, too!) by mid-August. The kids do most of it themselves and take pride in their new supplies, recognize what they’ll be using. We also try on the backpacks a few times so they have practice with the weight on their back again. We also talk about lunches and snacks they would like (they’re going to help me make their lunches this year!), make sure their water bottles are clean, sturdy and washed up and ready. We practice using our water bottles and lunch boxes for a couple of weeks, too, so that we know they can open them and use them on their own.

Wendy Zook Photography, Down Syndrome, Down Syndrome Awareness, Down Syndrome Parent, Back to school, Special Needs parent, Special Needs school plan, inclusion

We’re wishing you and your kiddos a very happy and easy transition back to school! You’re all going to rock the 2019-2020 year!

Accepting My Boy: What a Community’s Inclusion of my Son with Special Needs Means for Him and Them

It’s a neighborhood concert night and everything is perfect -- the weather is comfortable and sunny; the music is so awesome; there are familiar faces everywhere from our little Lake Linganore community. Oh, and there is a group of boys playing football in a circle just below our chairs. There’s about eight of them and they’re all relatively the same age, splitting off into teams and tossing the ball back and forth to one another and pitching it into imaginary end zones. They’re all getting equal play time and they seem like they’ve been best friends forever.

But here’s the thing. There’s an extra chromosome in this group. There’s a boy wearing bright yellow shorts who belongs to me and my heart. And this Momma Heart is so happy to see Zachary right in there with the kids.

Wendy Zook Photography, Down Syndrome Awareness, Community Inclusion, Special Needs, Special Needs Parent, DS Advocacy, Down Syndrome Parent

Zachary is different -- but aren’t we all? -- and I have hoped against hope for moments and days like this. The ordinary moments that showcase how kids have the right idea -- they see innocence and belonging and sameness while we adults tend to search right for the differences. These kids saw a boy their age with a willingness to throw a football and for them it was a no-brainer to scoop him up into their game.

But these moments aren’t always guaranteed. There is no promise that this will keep happening in two years or five years. What I do know is that right now and right here, this community has wrapped its arms around my son and given him the ability to just be one of the kids and to fit in just fine.

Wendy Zook Photography, Down Syndrome Awareness, Community Inclusion, Special Needs, Special Needs Parent, DS Advocacy, Down Syndrome Parent

It’s at the neighborhood concerts and while passing time at the bus stop. It’s in the hallways of the school and out at daily recess. The support and inclusion of my son -- at other kids’ birthday parties and playdates and conversations -- this is the happy warmth in my heart that brings me such great joy. It’s why we chose a path of inclusion at school and why we include him as often as possible in all of our normal daily adventures and to-dos.

Wendy Zook Photography, Down Syndrome Awareness, Community Inclusion, Special Needs, Special Needs Parent, DS Advocacy, Down Syndrome Parent

I like to think that I wasn’t the only person who saw this scene at the neighborhood concert -- that kids who were on the fence saw how welcomed Zach was by other kiddos; that some parents felt pride for their children in the football game; that other parents had meaningful conversations with their kids that night or the next day; that parents of younger kids would start a journey of getting them to be the ones that play football on a summer night with a new friend who happens to have an extra chromosome.

I am so grateful for our neighborhood, our school, our community. I’m so grateful for football games and music and joy.