Tag Archive | special needs child

Preschool Orientation

I realize I’m long overdue to give an update on Vivian’s preschool experience.  Mine, as well.

Orientation.  Gratefully, my husband came with me.  I walked in and couldn’t help but look around.  I tried to see all the other children’s disabilities.  I don’t want to sound selfish, I did this to look for someone similar to Vivian.

I was desperate to find a parent who feels the way I do.   Who’s going through what I am.  I’ve basically given up.  I take each day as it comes – doing my best to keep trudging forward.  Doing my best for my daughter and family.  This is all I can do.

At orientation I find myself thankfully completing paperwork.  I notice Viv head towards a boy with cerebral palsy, who wears a helmet.  As she looks at him with her head cocked sideways and reaches to find out what’s under there – I’m filled with pride.  I hope his parents are happy someone is being so gentle with and paying attention to him that they are proud, too.  We of course stop her from taking off his helmet, but I think it’s a good first step.

There’s a big smart board in the room.  It’s the first I’ve ever seen, but it’s a huge touchscreen for kids.  We were waiting for our little miss technology guru to figure this out, but she had to be shown it much later.  We also learned she would tolerate cube chairs for circle time.  Good luck getting her to stay still was all I could think!  Dave and I observed her for a while.  We watched as she took to a brunette girl in her 20’s – much like her regular babysitter, Becca.  It was great to see her making a connection – although we’re not sure the girl knew what to think of Vivian taking to her so well!

A week or so later, I sent her to school with a little list:


I don’t think this was bad!  She had a few days of summer school and then it was ready for the school year to begin on August 26.

Independence Day

Vivian certainly lived up to this holiday’s name today!  I made sure today was a mother/daughter day.  We played outside, went for a walk, ate breakfast and lunch together.  When it was time for Dave to come home from work, I wanted to (hopefully) surprise him.

Vivian does everything on her own time. If we try and force her to do something, most times she ends up resisting for longer out of fear. We have had this walker at the house for a few months now. We have gotten her to use it for very short walks around the house. Never would she walk without our hands over hers – just as she won’t when walking without the walker. We knew not to push her too much, but she was enjoying taking walks up and down our court, that I decided to try using the walker outside.

Sure enough she started walking, while I slowly moved my hands up her arms, then down to support her trunk. Once she was comfortable with that input, I then went to simply holding the back of the walker. This is the closest Vivian has ever come to walking independently! Little Miss did not want to head towards home, she wanted to keep going. A temper tantrum in a neighbor’s yard ensued, but luckily her daddy had just gotten home and was able to coax her to turn around. We finished our walk and went inside to cool down. We ended up going out again this evening – here is a video of her walking all on her own!

All I can say is I am so incredibly proud of her! I have been struggling, wondering what the next step will be in terms of her physical development. Now I have my answer and feel she is one step closer to physical independence!

Happy 4th of July!

Maybe next year…

This phrase has been on my mind a lot lately.  Since around Halloween, actually.  I loved getting Vivian dressed up in her costume, but it was bittersweet.  I took her out in her stroller, just around our cul-de-sac.  At the second house, I had to hold back tears while telling them “she would say trick-or-treat if she could.”  Maybe next year, I thought.  I did think it was pretty cute she tried to give the candy back, possibly because she was just mastering the put in/out skill.  Almost a week later came her birthday.  We had a small dinner with close friends and family.  At least this year she was able to open up her presents, although she doesn’t understand what her birthday is.  She clapped when everyone sang her “happy birthday”, but I had to blow out her candle and she didn’t want anything to do with her cupcake.  Maybe next year she’ll understand what her birthday party is for.

Then there was Christmas season.  We went to my husband’s company party, which is held at a bowling alley.  I recall thinking last year that it will be so much fun this year, when we will be able to bowl with her.  Not quite.  Again this year, she crawled all over the place, only sitting still to watch a movie and eat.  Bowling?  Maybe next year.  Our next big day was Christmas Eve.  We went to our neighbor’s house and ate appetizers, opened gifts and had a nice time.  As we were leaving, the other kids started making reindeer food.  A little while later, while putting her PJ’s on, the tears started.  I had really thought this Christmas was going to be different.  Dave asked me what was wrong and I answered “she should be making #$!#@^& reindeer food.”  Maybe next year.  I will admit that I cried myself to sleep Christmas Eve.  I kept thinking how few Christmas’ we are going to have with her having a true understanding of Christmas.  Then I would get upset with myself, thinking how selfish I was.  At least I would wake up in the morning with a happy, healthy little girl and get to enjoy the day with her.  Many others won’t get that with their child.  I am fortunate enough to have a wonderful husband that assured me that although she couldn’t make reindeer food, she is extremely happy, loves Toy Story and has a lot of people that love and care about her.  He held me that night and let me cry.  He also agreed, maybe next year.

Christmas day was much better for me.  It was nice and quiet and I enjoyed spending time with our family.  As I reflect on this past year, the one word that comes to mind is pride.  I am proud of all the accomplishments Vivian, Dave and I have made this year.  Vivian truly has come a long way this year, sometimes it’s just hard to see when it’s right in front of you every day.  I have read that around ages 3-4, children with incomplete myelination make a turn for the better.  I pray and pray that this holds true to Vivian.  Only time will tell, but I hope that this year there won’t be quite as many “maybe next year” moments.


it just sucks.  This weekend we unfortunately had to bury my husband’s grandmother. This in itself sucked.  This involved a two-day trip to Pittsburgh.  My level of anxiety was fairly high before the trip, mostly because of taking Vivian out of town.  3 hours each way in the truck, with a child who wakes up when we slow down or stop, only if she miracuously falls asleep in the vehicle.  About 6 hours spent in a funeral home.  Trying to eat meals in a hurry when Vivian prefers to eat very leisurely.  There’s much more, but you get the drift.

She ended up doing pretty well, despite the fact that she was also sick.  She only puked once, which happened to be on the way to the funeral Saturday morning.

I should explain why this really sucks.  Dave has two cousins and they all have little girls within a year of each other, Vivian being the youngest by about 3 months.  Those little girls were there and I just have to say that I love seeing them!  They both have great parents and are extremely adorable, smart, well-behaved children.  It’s just tough seeing how my daughter should be.  Saturday both the girls were there and while Vivian was watching a movie, they were coloring and playing.  At lunch afterward, they were eating their food themselves, talking, singing.  I hit my breakdown point.  In August we were all at a graduation party together and it was the same.  The girls were running around, playing, coloring, laughing.  Vivian crawled around the yard, watched a little of a movie and was able to cruise a little bit on the driveway ledge.  I was fortunate to have not packed any warmer clothes for Viv and ran to a store in town to get some for her.  I had barely made it out of the driveway before I burst into tears.  It has nothing to do with the girls, or even the little boy who lives next door to us who’s a month younger than Vivian.  It’s the fact that it’s right there in my face how my child “should” be.  I should be able to have a conversation with my daughter.  She should know what her birthday is.  She should understand what Christmas is about.  She should be walking.

I could go on and on about the things that she should be, but it’s not worth it.  I am so grateful for what she can be.  For what she is.  She can now say what a monkey says and sometimes what a cow says.  A month ago, she couldn’t.  I’ll take that.  I have to stay positive, no matter how hard that is.  I have to face it that sometimes, it just sucks.


On this Thanksgiving Day, it is typical to give thanks.  Today I am especially thankful that I am a mother to a special needs child.  I choose to use the words “it could be different”, not “it could be worse”.  I will never pretend to know what it’s like to have a child with a more severe disability, to never be able to receive a hug or kiss from my daughter or to never be able to hold my living, breathing child.  There are mothers that have lost their children, before an ultrasound picture or after delivering at full term.  I have the utmost respect for them.  There are mothers who will never get to see their child crawl or walk, who will not receive an emotional, physical or verbal response from their child.  I am thankful for everything Vivian gives me on a daily basis.  I consider myself lucky for what I have received from Vivian thus far.

Mothers are some of the strongest people I know and the obstacles that some have endured are beyond triumphant.  I am thankful for all mothers of special needs children and would like to share this poem I came across recently:

Some Mothers Chosen By God
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son. Patron saint, Matthew.”

“Forrest, Marjorie, daughter. Patron saint, Cecelia.”

“Rudledge, Carrie, twins. Patron saint…give her Gerard, He’s used to profanity.”

Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God?  She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word.” She will never consider a “step” ordinary. When her child says “Momma” for the first time, she will be
present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see….ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in mid-air.

God smiles. “A mirror will suffice.”

Happy Thanksgiving!

BG is 3!

Today Vivian turned 3 years old.  Time certainly does fly!  I look through her baby pictures and am just amazed at how much she’s grown and changed.  Tonight I made her spaghetti and clam sauce (one of her favorites) and she gasped and clapped when she saw it.  She was very excited to open her presents and brought Dave and I many smiles, as she does every day.

It’s strange, when she was younger and we first realized she was having delays, I used to say “It’s not like she’s going to be 3 and not walking”.  Seriously, how could I be so naive?  Who was I to say that?  I stopped saying that when she was about a year and a half.  Unfortunately now she is 3 and still cannot walk.  I am praying that she walks before age 4 –  I believe that’s a reasonable goal.  Nonetheless she is an extremely happy and healthy 3 year old who has a whole army of people sending her love and prayers.  She is very blessed.  Thank you everyone and happy birthday, Vivian!!



These are baby girl’s feet.  Her ankles look like this because of the missing fibrillin.  In August 2011 we got her SMO’s (Supra-Malleolar Orthosis).  The orthopedic’s office custom-made them for her.  At that time, she was still belly crawling, so they were sufficient (she did start hands-and-knees crawling in September 2011).  If she did do any standing, they helped to support her legs by keeping her ankles straight.  These orthotics were made with room to grow.  When they were nearing the end of their usable life, we met with the orthopedic doctor again.  I went to that appointment with much anticipation.  I had a feeling what the next step was.

Vivian had shown interest in standing and assisted walking.  As far as balance went, she pretty much had none.  When the doctor recommended we get AFO’s (Ankle-Foot Orthosis), my heart sunk a little.  OK, maybe a lot.  The SMO’s went just over her ankles and were pretty much unnoticeable.  AFO’s look like this:


The fact that something was wrong with my daughter would now be much more visible.

I knew I had to accept that these braces would help her, but nonetheless it was hard.  It still is.  Fortunately, she has made great improvements over the last few months.  Unfortunately, she is still not walking.  November 5 Vivian turns 3.

Feeding the animals

Today we went to a “zoo” with my family.  Vivian was in her stroller and my grandma in a wheelchair.  It was so great to see the joy in grandma’s eyes, especially because part of me really thinks she thought she was in Africa, like we told her every time she asked (she has dementia).  Unfortunately, Vivian couldn’t have cared less that she was at the zoo.  She doesn’t know any different.  We pointed out different animals and colors, but we enjoyed it more than she did.
After we completed our walk around, we were standing around a pen with a few goats and piglets.  Dave, Vivian and I were standing separate from the rest of my family.  On the other side of us, there was a cute little girl that was having a blast feeding the piglets.  After a little while, her mom asked me if my daughter wanted some of their food to feed the animals.  Me: speechless.  I literally got heart palpitations.  How do I answer this?  It was a simple question with a very complicated answer.  I answered “She’s… Uh… she… Uh… She can’t feed the animals.”  I couldn’t even look her in the eyes.  Did she think I’m a mean mom and simply wouldn’t let my daughter feed the animals?  Vivian’s pants happened to be down past her butt, so she couldn’t see her leg braces.  She had her glasses on, but so do many other children out there.  Besides her lack of speech, there was no way for her to know that there was a reason why she couldn’t feed the animals.  I didn’t know what explanation I could give to her, but did I really need to?

Just be

This picture is my inspiration for today’s post.  It was posted by the National Marfan Foundation on their facebook page this morning.  Everyone starts out in life the same way and everyone ends up different.  Vivian is obviously unique, but so am I and so are you.

Yesterday we had an appointment at Hopkins.  This time we met with a Nurse Practitioner in the genetics department that specializes in Marfan syndrome and connective tissue disorders.  After introducing herself and a resident that was shadowing, she kneeled down beside Vivian in her stroller.  Vivian reached over, put her hand on her arm and turned her head sideways, giving the woman a smile.  I knew this was going to be a good visit!  We were basically there to see how frequently we needed to follow up with a cardiologst.  The greatest concern with Vivian, in terms of her connective tissue, is the possibility for an enlarged aortic root.  Since size can change with development, just because hers is normal now, does not mean it will still be as she ages.  We will be getting an echo cardiogram annally to check the growth.

I had previously been told that there was another patient at Hopkins that was similar to Vivian.  Naturally, I asked about said patient.  There is a six year old boy out there that is also missing the part of chromosome 15 that produces fibrillin!  We were informed that he is currently in school, he did have some developmental delays, and did have problems with his ankles/feet, as well (future post will explain).  When I heard this, I felt a strange sense of relief.  There was another little one (sort of) like baby girl out there!

Vivian is currently on this kick where she loves to look at our photo albums.  She will go into my office and flip back and forth, over and over, and be perfectly content.  Dave asked me the other day if this was “normal” for kids. I have no idea, but it doesn’t matter.  I’m not going to stop her from looking at photo albums, just because it’s not “typical” child behavior.  I’m going to embrace it.  I’m going to sit on the couch with her and look through them with her.  This holds true to anything in the future.  Whatever interests her, I will support her.  Even though it may not be “mainstream” or what all the cool kids do, every child deserves the right to be happy.  If doing something a little different makes them happy, then go for it.  As a parent, I feel I have no right to govern what activities or interests my child should or should not do.  Let them be who they are.

The Pediatric Neurologist

Dave and I were very excited for the appointment with the pediatric neurologist. OK, maybe not excited, but definitely anxious. We were hoping we would understand more about our daughter and get a better understanding of what progress had been made with the formation of myelin (after the MRI that we would schedule), and what her future would hold.

First we met with a resident, who asked many questions about Vivian and we answered them the best we could. Trying to think of what exactly was asked – I can’t recall. I’m willing to bet it had something to do with the fact that I had to wake up around 4:30 that morning.

The resident reviewed her notes with the doctor and then they both returned to the room. One of the first questions that the doctor asked us was what our science background was. Mine and my husband’s professions are on opposite sides of the spectrum from a doctor, even from each other. I made a joke about us not being into the whole college thing, but nonetheless we are pretty bright. Silence. Perhaps I should have taken her lack of sense of humor as a sign of things to come.

I had written down some questions that I thought might have to do with her brain and the neurologist would be able to help answer: “Why does she like to rub objects on her face?”, “What are the causes?”, “Delayed vs incomplete myelination?”, “Impacts on speech, physical and cognitive development?”, “Are there any cures?” Unfortunately I didn’t get many answers. She did explain that myelin is the fatty coating on conductors of electricity in the brain. That’s pretty much the only thing I wrote down from the appointment. She explained that because Vivian had not demonstrated a plateau or loss of skills, that a follow-up MRI would not be necessary. Naturally this concerned me. How will we be able to judge how the production is going and what her future holds? Dave was composed enough to be able to ask if she was going to be mentally retarded. Our answer: “We’ll know when she can take an IQ test.” That was it. All we got. At the point I basically started to sob. The doctor just looked at me, and then continued talking about something else. Strike one.

A good thing that this doctor did was tell us more about the genetics. She explained how there are certain things about Vivian that are affected by the segments of her chromosome that are missing. One of these being fibrillin, which is connected to marfan syndrome. I asked her if she could make me a copy of it, so that I can know what else is affected and more about my daughter. Nope. That’s why she’s there. We go to the doctors so they can tell us what’s on that paper. Strike two.

Strike three was the overall feeling my husband and I got from the doctor. We are not expecting a best friend, but at least some compassion and general humanness and maybe some answers thrown in. Perhaps there are no answers. “Only time will tell”. I despise that saying. Needless to say, we will not be returning to this neurologist. We don’t doubt she’s extremely intelligent, but we are not going to connect with every doctor and feel they are a good fit for our daughter. Numb, confused, lost and irritated are all feelings I had that day. I feel them every day.