Special Needs parent

An interview with Linda: Understanding ADD/ADHD and a Special Journey in Motherhood

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. 


I first met Linda and Sara when my family and I lived in the Wilkes Barre, Pennsylvania area. Linda was one of my first clients and I so loved photographing Sara and staying in touch since then. Linda is so open and honest about Sara’s struggles with behavior and anxiety and I’m grateful she was willing to share her story here.

Wendy Zook Photography | Special needs family, special needs, motherhood, ADD, ADHD, special needs parent

Tell us about you and your family. 

My name is Linda and I'm a single mom to my daughter, Sara Alizabeth (10). We live in Northeast PA in a town that is in between Scranton and Wilkes Barre.  I work part time as an administrative assistant for a Heavy Equip Dealership and my daughter just started Middle School and is in 5th grade.

Who are you specifically talking about today? 

Today I will talk about my daughter, Sara 

Tell us about Sara!

Sara is 10 and is in 5th grade (but has an IQ of an 8-year-old). Sara doesn't have any favorite subject as she dislikes school very much.  If there was a subject called “Social Butterfly” that would be her favorite! Sara is always on the go; she loves to be moving around at all times, day or night.  She loves to dance, sing and be an entertainer. She has a very straightforward personality and doesn't hold anything back - good or bad. She has a very soft side and is very compassionate and loving, especially to others that have a disability or elderly people. 

Her favorite hobbies are hip-hop class, riding her bike, swimming, ice skating and jumping on the trampoline. 

What diagnosis(es) do/does your loved one have?

Sara was diagnosed with ADHD, Generalized Anxiety Disorder and BIF (Boderline Intellectual functioning) in November of 2017 when she was 8 years old.  Borderline intellectual functioning, also called borderline mental retardation (in the ICD-8), is a categorization of intelligence wherein a person has below average cognitive ability (generally an IQ of 70–85), but the deficit is not as severe as intellectual disability (below 70).

I would say it's 50/50 visible/invisible and yes, now that we are back to school it makes the % go up to about 70/30 visible/invisible.

What was your initial reaction to this diagnosis? What was your greatest fear?

My initial reaction was a sigh of relief that she would start getting the help that she needed since she was 4 years old. My greatest fear is that she will never be able to live a "normal" lifestyle.  What I mean by that is the constant reminders and redirection that she needs on a daily basis -- everything down to reminding her about personal hygiene, cleaning up after herself, etc. etc.

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

Sara is constantly all over the place -- she will start an activity and become bored or distracted and move onto the next activity and never pick up from the first.  She struggles the most with staying focused and sleep is a huge issue as well.

Wendy Zook Photography | Special needs family, special needs, motherhood, ADD, ADHD, special needs parent

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

That she is a spoiled only child and is being a brat just to get her own way. 

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

I wake up at approximately 5:30 to start my day prior to waking her at 6:45.  I know the minute she comes downstairs, all of my chores and my daily routine needs to be complete because she needs my full attention in order to get to the bus stop by 7:45.  Once she goes to school I go to work part-time for 5 hours a day and then she arrives home at about 3pm. We then have a snack and some playtime with the dog and then it's right onto homework.  After homework I cook and clean up and then she could play until 8:00. Then her bedtime routine starts and she needs to be in her bed laying down by 9pm. I then do whatever chores that need to be done and go to bed around 11pm.  

What areas are the hardest -- everyday functions, education, employment, behavior, etc -- and why?

Oh boy!  This is a tough one - I'm struggling right now with all of the above.  Trying to get back into a routine is very hard and as summer just ended and we didn't have structure or set schedules during the summer months it's very difficult trying to get back into the swing of things.  

Her education is my main concern and I question myself each and every minute of the day, whether or not I should have held her back in the 4th grade.  Actually, I have been doing this each and every year since she started Pre-K at 3.5 years old.  

Sara's behavior has improved tremendously since we finally found a medication that works for her. 

What is your greatest wish you have for your child? 

For Sara to continue being the caring, compassionate, and loving child that she is and to always strive for the best that she is capable of doing.

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

I belong to several support groups on facebook:

ADHD/ADD/ODD/DMDD parent support group for children 16 and younger

Moms Of ADHD, Anxiety, ASD, ODD Kids (Support Group)

BIF support group

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.

Zach & Addie: A Sibling Relationship of Love, Pride, Support and Joy

I am the luckiest mom in the world. Even on the hardest days, I believe that sentence with 100 percent of my being. Being the mother to Zachary and Addison is such an incredible experience that I treasure every day.

I always wanted a house full of children; I always wanted a Christmas dinner with so many chairs around the table that it took 10 minutes to pass the potatoes from one end to the other. I wanted my kiddos to have a support system around them always and to go through life with some best friends who share blood.

And then reality set in and quite honestly, between health concerns and back-to-back difficult labors and deliveries and moving for Scott’s job multiple times when the children were babies, having more than our two awesome kiddos just wasn’t in the cards for us.

Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness
Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness

I wasted a lot of unnecessary time wondering if having Zachary for her brother would ever feel like a burden or “too much” for Addie. Looking back now, it’s one of the things that Current Me would most want to slap Past Me in the face for -- I see now that they are each ridiculously lucky to have the other for a sibling.

I don’t know what the future holds for the two of them as a team. There’s a possibility that one day, we will have to officially ask Addie to care for her brother when he’s an adult. There’s a possibility that she will be teased herself about her brother. There’s a chance that there will be moments of annoyance or frustration. There are other possibilities that I can’t even allow myself to say or think out loud, but they lie in a deep dark place.

But what I do know is that now -- right now -- they are each other’s rock.

Addie is an empathetic, wise, big-feelings kind of girl. She wants everyone to be happy and to feel loved and the biggest recipient of her big heart is her big brother. If he’s upset, she’s right next to him rubbing his back. If he has a boo-boo, she’s on an immediate quest for a band-aid. If he’s nervous or trying something new, she is clapping and cheering him on.

This past year has seen a lot of moments with big talks -- about Down syndrome, therapists and special treatments, treating all people the same, bullying and teasing and so much more. It’s a delicate balance of being honest and yet delivering it in an appropriate way for a 7-year-old. She asks amazing questions. I always answer with a pause and complete truths.

But it’s not just Zachary that wins a cheerleader in this situation. 

Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness
Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness
Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness

I talk to adults who have siblings with special needs and the one thing they always say is that having their brother or sister in their lives has made them a better person. Their parents say both siblings learn compassion earlier and bigger than most kids.

If Zach is not wanting to do homework for me or with me, 9 out of 10 times he’ll do it immediately if Addie helps him. If Addie is sad, Zach is trying to be silly and make her laugh. They share with each other -- the last of favorite snack, a dollar from their piggybank, a sweatshirt on a cold day, toys and games to borrow. They read together, help each other with showers, hold hands almost all the time and constantly try to surprise the other with a kind note or gesture or surprise. If one has a day with mom or dad alone and the other is at home, the one who is out and about will always ask to bring something back for the other. They request sleepovers constantly and frequently read a book together before bed.

Photo thanks to Amanda Hedgepeth Photography

Photo thanks to Amanda Hedgepeth Photography

Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness
Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness

There is a lot of cheering in our house. A huge amount of hugs. And all the laughter you can imagine. And our house is always filled with kids -- friends of both kids. Our home and our hearts are more full than I ever could have dreamed.

I really am the luckiest mom in the world. But my kids? They’re even luckier. Because they have each other.

Wendy Zook Photography | Down Syndrome Awareness, Down Syndrome family, sibling with Down Syndrome, siblings, brother and sister, parent of child with Down Syndrome, DS awareness

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.