Microcephaly Day | September 30

Microcephaly awareness day is tomorrow, September 30. Although we will never know the actual cause of Sarah's delays, her pediatrician suspects that at some point early in my pregnancy, her brain suffered from a lack of oxygen.

When she was born, she was so tiny despite being almost 1.5 weeks overdue. Barely six pounds and 17 inches tall. I had never held a baby so tiny.

We had never heard the term "Microcephaly" until we began seeing our current pediatrician around Sarah's third birthday. His diagnosis was almost instant as soon as he saw her. The Mayo Clinic defines microcephaly as:

"a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age and sex. Sometimes detected at birth, microcephaly usually is the result of the brain developing abnormally in the womb or not growing as it should after birth." (Mayo Clinic)

I believe that microcephaly is the greater diagnosis rather than the cerebral palsy. I have no medical reasoning other than doing my own research and seeing the effects of it. Sarah's head circumference is 47.6 centimeters which is average for a 20-22 month old. In comparison, a nine year old should have a head size of about 52 centimetres.

The consequences of microcephaly are:

"...depending on the cause and severity of the microcephaly, complications may include: 

• Developmental delays, such as in speech and movement
• Difficulties with coordination and balance
• Dwarfism or short stature
• Facial distortions
• Hyperactivity
• Mental retardation
• Seizures"

(Mayo Clinic)

With Sarah, the most obvious effects of microcephaly are her severe developmental delays. She doesn't act, behave, speak or learn like a typical 9 year old. Instead it's as though we have a 3-4 year old all the time. We have seen that over time, her coordination and balance have improved quite a bit. She struggles to walk long distances so the stroller is still a useful tool in our lives. 

She loves life. Other than a few things that make her unhappy, she is an absolute ray of sunshine in our lives. Her family is her world and many times during the day she will check in with me as to everyone's whereabouts. Sometimes she will just say "mom" to make sure I'm still around. She is so easy to please with a walk, visit to a park or a quick trip out for some fries or a donut. She loves to play with Duplo, wooden trains, and stuffed animals. 

Having a child with a "special needs" label was not something I ever thought I'd have but Sarah has enriched my life in ways that I cannot explain. I am blessed and can't imagine life any other way.

Tuesday Thoughts...

For the past couple of days, I have waited to go to the park with Sarah until the evening. She's on some medication that makes her skin more sensitive to the sun so we've gone out after supper. Last night as I was reflecting and watching her play, I had a few thoughts come to mind. Sarah is nine years old. Her style of play would say otherwise though. As I was observing her it seemed like the word "simple" was one to describe her. Sure there are other things that make her uniquely complex but something about seeing her play outside was simple. She went on one slide over and over again with no need or desire to try anything else out. Part of this is because the amount of louder kids on the other equipment keeps her from venturing too far. After 20 or more "slides", we made our way to the swing, her little hand tucked in mine. The large swing, designed for special needs kids was free and she quickly made her way over. This type of swing allows her to relax and fully enjoy the swinging motion without having to think about holding on or balancing. After the swinging, we made our way back to the now empty climbing structure where she began to take my order and made me coffee, fries, and hotdogs.

She's a quiet observer when she's out. Occasionally she will interact with other kids but only if there's one or two and if they appear to be calm and usually they are younger in age than her but closer to her developmentally. Last night I was her playmate and we had a wonderful evening together. These are the things she remembers and I love being with her, playing and watching her discover the world around her.

The swing that makes her feel safe and secure

This Week (A Raw and Real Post)

Lately one of Sarah's activities includes taking apart her toys. I mean she's taking the hair off her Playmobil people and disassembling every. single. item. And this week, it brought me to the brink of frustration. Frustrated that she doesn't play with toys for their actual play value, rather getting enjoyment out of taking them apart with no interest or desire to reassemble them. Why? I have no idea.

It was on the weekend where I cried to Doug after we had gone to our room for the night as the grief loomed over me once again. I was so disheartened that she can't or won't use the toys appropriately. It makes my heart ache as I watch her play in such a toddler-like fashion. I was angry that things have been bought for her and she isn't able to use them for their purpose. I ask myself many times over as to what would be a better play thing for her? What would she enjoy playing with? And nothing comes to mind. I simply draw a blank. She likes playdoh but can only do that for a certain amount of time. She loves playing in water but I can't have her sit in the tub all day either. When I see kids her age and younger exceeding her academically and developmentally I am saddened by it once again. It means that homeschooling her requires my imagination, creativity and time so I can create a unique to her curriculum that will help her learn about her world.

I have learned (and am still learning) that I can feel this way. It is okay for me to be hurt and to cry over this stuff. I occasionally feel helpless and that transforms into guilt. But I am doing the best that I can for Sarah. I am a good parent and the best one for her. I also have to remember to separate Sarah from her diagnosis's. Cerebral palsy, microcephaly and developmental delays are what Sarah has, not who she is. These have become part of our "normal" and are simply a part of our lives now. We are learning to adapt to her and her needs, like needing to go to a different park because there are too many kids already or because construction crews are running their loud machines close by. I am grateful for the flexibility of a friend who made it so simple to pack up and find a new place to play.

After I let it out, Doug reminded me of the wonderful things that Sarah does. By simply taking her camping last week, I gave her the "best day ever" every morning. It takes a drive to a park with sand to delight her and make her day complete. And when the day comes to an end and her teeny little arms wrap tightly around my neck I am reminded once again of the amazing gift that she is.

As Doug said to me earlier today, perhaps those joys are made all the sweeter because they come in spite of, and likely because of who God made her to be.

Four Years Ago Today

Four years ago today I wrote this blog post.  This was the first day that I blogged about Sarah's delays, shortly after a speech assessment. Looking back, I can still remember how terrifying and alone I felt. I was in a state of shock and even numbness as I began to process and understand what this change meant for us. I was suddenly part of a new group of people, a wonderful group who are parents of special kids. Special because they transform us into a person we never knew we could be.

Most of the time, Sarah's delays are a non-issue. She only knows her world as it is- there was no loss of anything for her. She lives in the moment and and lives to love. She does everything with passion, whether it is playing with her toys, eating her favorite foods or snuggling with me at bedtime.

Even though we have learned {and are still learning} to work with Sarah at her own unique level, there are brief moments of grief that still rise up in Doug and I. When we see kids her age and much younger surpass her in skills such as reading, writing, playing and speech, our hearts hurt for her. Although she doesn't know what she's missing, we do, and sometimes we even experience pangs of jealousy. It's not easy to admit that but, it's true. I'm thankful those moments don't last long but they exist.

The past four years of raising Sarah has changed our lives drastically. All the ideals of what she "should be" doing are put away. I still think of them but nothing I do can or will change who she is or how quickly she catches on to a concept. Having Sarah in our lives has put much more value on loving and understanding her regardless of her cognitive development. And yes, I still experience moments of grief and sadness as I realize for the umpteenth time of what she's not doing. Over time, those moments are becoming fewer and farther apart and I am rejoicing in the small victories more often. This is a journey that I never dreamed of taking but I am learning to enjoy "Holland".

WELCOME TO HOLLAND

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

My "Holland" isn't a vacation or holiday. It's a life and we're living with this detour for the rest of our lives and that's okay. Sarah brings a light into our day like no one else can and she is so deeply loved by everyone she knows.

Would We Want to Cure Her?

I had recently read a blog that began like this: If you had a magic wand that could "cure" your child's disability, would you use it? 

The answers varied greatly and I got to thinking that I would like to answer it as well. I also asked Doug, the kids and my in-laws for their thoughts on this. The answers all vary and I love everyone so incredibly much. I am very thankful for their input and thoughts as they helped create this blog post. I am blessed.

Arianna - Age 10½

I don't want her to change. Sometimes I wish she was "normal" so she could play with me and we could actually talk.

But then I think about all the hug-uppies and cungles and I change my mind. I love her so much I'm glad I have her as a sister.

Andrea - Age 14

It's a really hard question, because I don't know what things would be like if she was 'cured.' Would she be happier? Less stressed? Get hurt less?

But my answer is no. I never want Sarah to change, even if there was a miraculous way to 'heal her.' She doesn't need healing in my opinion. She is delayed, both physically and mentally, but she's also the most caring, sweet six year old I have ever met. Why push her to grow up as fast as the rest, when she's perfectly happy growing at her own pace? She's learning new things every single day, it's just taking a little longer than the rest. 

My sister is beautiful. She has the biggest heart, the best hugs, the sweetest words and the most wonderful 'I love you too's' and 'I missed you so much's.' She's perfect just the way she is and I would miss her so much if she changed. 

Joshua - Age 15½

No, because then she wouldn't be who she is.

Doug 

If there was an opportunity to "heal" Sarah and bring her to 'normal' function, would I want to pursue it? I really don't  know - a part of me would be afraid of messing with who God made Sarah to be, and losing some of who she is in the process. The best I can offer right now is a kind of for-and-against list.

The first premises that would have to be assumed is that the process would be established and safe, and that no harm or distress would come to Sarah in the process... that said:

For 'Yes':  This would be primarily for our benefit, rather than hers. It would mean that we would more free to spend time just as a husband and wife, and with our other children one on one. It would mean that what is best for Sarah school-wise would be more certain, and the systems that are in place would be a better fit.  Her peers may better understand her, and she might not be pushed around to the same degree that we see now. (and foresee in the coming years)

We would not have to prepare to care for Sarah into her adulthood.  We wouldn't have to fear that she might be taken advantage of as an adult.  

As an adult, she would have a better chance of living independently and 'successfully' by society's standards.

For 'No': Sarah is about the most loving person I know. She is not suspicious of others, she is not aggressive or a bully to others. Sarah unabashedly shows her love for people around her up to and including kissing someone's feet. Why would I risk altering those things?

Sarah has taught our children what it is to care for and defend someone who is not like the majority. That people who are 'special needs' also have a lot to give, and that they have value.

Sarah has taught Stephanie and I so much... That even the hard things in life have a blessing for us. That uncertainty can drive us closer together rather than apart.  That seeing the beautiful flowers in a cemetery can ease the pain of grief. That a hug-uppie may not fix everything, but it helps a whole lot. And that sometimes, it's okay to cry about how hard it is to cope with the challenges.  It's good to share with others who have special needs children, and it's good to share life with others because we can grow and help others grow too!

So - would I take the chance to 'heal' Sarah? Probably not.

Me

I think there are two sides to everything and my heart sits on the fence of both. In the end, my answer is what it is. 

For 'yes': 

Like Doug said, if Sarah was cured of all her delays, it would be for our own benefit, not hers. For one it would make some things like homeschooling easier. The curriculums are for typical kids and she would more readily grasp the concepts that I would teach. There would be less frustrations on my end since right now I need to do all the curriculum creating on my own.

I would not worry about what her future will be as she becomes an adult. She'd be able to pursue a career, have a family and live on her own. Perhaps that can still happen but with her delays as they are, her future is much more uncertain. I often think of what her life will be like as she gets older and it occasionally causes me some concerns. It's a scary world out there and I don't know what she would be able to handle on her own. 

She would be able to stand up for herself when circumstances arise and I wouldn't need to explain why she does things her way. She would likely eat normally and diapers would be a thing of the past. So yes, there are some areas that would make life here a little simpler if she didn't have the issues she does. I would love for her to be developmentally on target with her peers, being able to play age appropriate games and talk to them at their level. It would be nice if things were just easier for her.

For 'no': 

Sarah is who she is because God created her that way. She is perfect in His eyes and mine. The things I have learned because of Sarah are innumerable and I am blessed beyond words. She has taught me compassion, unconditional love and grace. I have learned to trust God with her and many times I surrender her back to my Father like we did six and a half years ago when we dedicated her as a newborn.

Sarah has also taught our family how to respect and care for those who fall into the "special needs" category. My children are very aware of others who have struggles and their hearts are so open to them. They have learned how to love in a very different way and I am so proud of who they are because Sarah is in their lives. I have learned to be honest as well. There have been times when asked how things are going and I lay it all out on the line. I don't keep much bottled up inside anymore and greatly value the people who have listened to me. 

Having a child with severe delays and a condition that has caused her brain to grow considerably slower than others has made me more educated on topics that at the time, I didn't even know existed. I have made many friends online who I may never meet but who can understand what I'm going through. All my life, I have loved babies. For as long as I can remember, I played with dolls, doted on my youngest brother and then my four cousins through the years. Sarah is young. She is staying young. She is growing physically but inside my baby is staying a baby just a little bit longer than the rest. She curls into my lap with ease and can still be picked up by everyone in our family. Her little quirks of asking for a hug-uppie, needing cungles and wanting everyone around her are yet other ways that make her unique.

My daughter sees the good and beauty in everyone and everything. She loves anyone who will love her back and her dimpled smile can wash away my tears any time. She also doesn’t know life any differently. She has a family and friends who love and adore her and she sees everyone as good. A "cure" would change who Sarah is and I wouldn't want that for her. It would mean getting to know a new and different person, and I don't think I'm ready for that. I have to have faith that God will see his plan for Sarah through. My life took a sharp turn off the road of "normal" the day we received her first diagnosis in November of 2011. Life is still normal, it's just a different normal than what other's may have.

Ultimately, if I had to chose right now, I would say no. She will continue to grow and learn at her own unique pace and I wouldn't want to change her at all. 

Grandma

I've been thinking about the question ......and it's a yes/no answer I come up with. Each child only has his/her point of reference- not aware of the things and events they won't ever experience. They live in the moment, unworried about tomorrow. Unconditional love, freely and honestly given. It's the adults, parents who are so aware of what other "normal" children/people go on to experience. The hard part for me is the thought of providing the everyday physical care needed when parents grow old, planning ways to provide care into that future. That's why I would accept a cure.

Grandpa

Ooh, tough one. There are arguments for both sides of that one! Ultimately, I have to say, I think I would chose the cure. As parents we all want what is best for our kids. We want them to have full,

complete, fruitful, happy and rewarding lives. Looking forward I see many struggles and challenges to be overcome, and with God's help that will happen. Having a handicapped brother, and seeing the frustration for him, my parents, and us siblings over the years, I think if there was a cure for him it would have been better. That said, it is what it is. We do the best we can with we are given, and try to be thankful in every circumstance. Sarah is such a blessing in so many ways, and I'm not sure if she was "normal" I would have seen such a beautiful display of pure love that there was between her and Brenda today in church. There are blessings everywhere if we just see them. Like I said, tough one! Just one old fogey's opinion.

"Love"

Three Years Ago

It was on this day in 2011 when Doug and I sat in the pediatrician's office waiting to hear the results of Sarah's most recent MRI which had been a couple weeks earlier. I can remember entering the room and expecting or hoping that we'd be told that the tests showed nothing abnormal. I can also recall the shocked and slightly stunned feeling when he delivered the news to us.

This is what I wrote three years ago:

"Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. They also found that there is "periventricular white matter" , consistent with "periventricular gliosis", which is likely the cause of her balance issues. All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy."  

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time.

(Information taken from this SITE)

So, back to present day. Where are we now and what have we learned? Over time, the shock wore off. I was reminded by family and friends that the label doesn't change who Sarah is, nor does it define her. We went through two and a half years in the Early Intervention Program until Sarah turned five. They were memorable times and I learned a lot about how Sarah was and is developing. 

Sarah experiences most of the symptoms that CP displays. Her learning is slower than others which is also due to the severe microcephaly, but that's another post in itself. She has a very unbalanced diet which is high in carbohydrates and low in meats and veggies. It's not for a lack of effort on my part that's for sure. Her muscle tone, movements and motor skills are also compromised because of the cerebral palsy. 

I am thankful that she knows no different though. What Sarah lacks in many skills, she excels in others. She can love in ways that even I can't comprehend. She is loveable, charming and a delight to be around. Her laugh is contagious and she knows how to make anyone smile. She loves going to church and the people there have become like her second family. She is so eager to play outside with her friend Mr. Bruce and she even brought her snow clothes to church on Sunday so he could take her out. She loves people deeply and many of them have a special place in her heart.

As for me, there are occasionally moments and even days where I find myself hurting inside again. It's tough to know that she likely will not ever meet her peers' developmental level and always be behind. In fact, that gap will continue to get larger as time goes on. Watching her alongside other kids her age or even younger is hard at times. 

But, I am so thankful for the encouragement of friends and the love and support they provide. It's been quite the journey so far and I look forward to seeing where we continue to go.

Third Anniversary

May 16th marked the third anniversary of the day that "normal" was redefined for us. I blogged about that day HERE. Now I'm not totally sure why I didn't write this post on Friday, I think I got my dates mixed up.

I can still see so clearly in my mind about how that very first home visit, which consisted of a DISC (Diagnostic Inventory for Screening Children) assessment had gone. I had no idea what to expect of this visit and when I saw how low Sarah scored on the tests, I was devastated. We were told that she was anywhere from 8-18 months behind kids who were her age. It was quite the blow to hear from someone that our daughter wasn't developing typically.

The months and years that followed consisted of biweekly home visits from our Early Intervention Coordinator which were times full of play ideas, tips and encouragement. I think initially I was resistant to Wendy, possibly because I wanted to deny that anything was different with Sarah. As time went on, I found her to be someone who was an encourager, supporter and cheerleader for me. I was learning to be strong for Sarah and to fight for her. I am so thankful for the times Wendy, Sarah and I had together and I believe she was a vital part of our lives for that time. It was sad to say good bye to her when Sarah turned five.

This day marked the beginning of a whole new chapter of life for us. We would quickly learn words like cerebral palsy, severe microcephaly, severe global developmental delays, intervention, special needs and more. Although these words do not define who Sarah is and they are a part of of our lives, she didn't change that day, simply because a label was given.

Sarah continues to be a blessing to Doug, myself, our family and to just about anyone who meets and knows her. Our life took a detour that day. We are on a different journey than we may have thought we would have been and although it hasn't all been easy, we have conquered many mountains and milestones. We celebrate each victory with enthusiasm, no matter how small. The other day, Sarah picked me a dandelion bouquet for the first time and it was such a precious gift to me.

Today, I don't know where she is as far as her developmental stages are. She certainly acts and speaks considerably younger than she is but I have no tools to base that on. If I had to guess, I'd place her around 3.5-4 years old, depending on the skill. And today, that's okay. She is perfect in God's eyes and she is exactly how he wants her to be.

Parent Appointment (12.10.13)

Yesterday afternoon, I had the opportunity to meet with Sarah's pediatrician. By myself. Without my sweet (screaming) daughter. It was probably the best appointment I've had with him. The clinic was closed except for the doctor, myself and a few nurses.

When I sat down in his office, Sarah's chart was set out and open already, which was kind of nice because I felt he was prepared. For a while now, Sarah has been displaying some really odd symptoms and I needed to voice my thoughts and see what Dr. M's ideas were on it. Some of these things are:

• flaps her arms
• spins (and doesn't appear to be dizzy)
• she doesn't make good eye contact
• no understanding of fear and danger
• laughs inappropriately
• insensitive or oversensitive to pain

He showed me Sarah's head circumference chart which indicates her head size to be markedly lower than the average five and a half year old. He said that out of 100 kids, 96 of them would have an average sized head, two would be above average and two would be below. Sarah would be one of those two and she's an extreme case. Now, because her head is so much smaller than average, the result is severe delays in all areas of development. These include fine and gross motor skills, social interaction, auditory memory (remembering what she hears), visual memory (remembering what she sees), self help, expressive language (what she can speak) and receptive language (what she understands).

So, in a nutshell: all of Sarah's delays are due to the extreme Microcephaly: (Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing. Microcephaly can be present at birth or it may develop in the first few years of life). 

Depending on the severity of the accompanying syndrome, children with microcephaly may have:

•  or learning disability
• delayed motor function and speech
• facial distortions,
• dwarfism or short stature,
• hyperactivity,
• seizures,
• difficulties with coordination and balance, and
• other brain or neurological abnormalities.

Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.

Previous notes taken from HERE

Due to her immaturity (Dr. M placed her at about age 2), she might display autistic-looking "symptoms" only because of the delays that are reflective of the Microcephaly

He told me that she will always be fairly behind kids her age and the gap will continue to grow as she gets older and that's because she's developing at a much slower rate than others. She also very likely will be dependent into her adulthood. Maybe not, but he said to be prepared for a lifetime of supporting her.

Sarah is still really small for her age and is severely disproportionate which is why she looks like a little adult. If you don't know what I mean, the next time you see her, you'll that she doesn't have the large "bobble" head that other kids have.  So, when all is said and done, I am really thankful I had to opportunity to talk to Dr. M without a (loud) distraction. He is blunt, honest, very good at what he does and has a true love for kids, including Sarah. I also know that nothing has changed and that Sarah is still Sarah. Homeschooling her is and for now, always will be the best thing for her because I can follow her lead and teach her what I think is relevant to her. I am blessed to have friends who are supportive and encouraging, including someone who texted with me until 10:30 last night offering me some hopeful and reassuring insight to what I learned today. She's very appreciated and I am very thankful for her and the time she gives me!  This is what recovery from a Dr. appointment looks like! So how are we doing? Doug and I are now processing the idea that Sarah may possibly be dependent on us (or someone else) for a very long time, possibly forever. I think both of us lost some sleep last night as those were the thoughts that consumed us. Sometimes it feels like I take two steps forward and then one step back as far as my faith walk goes.  The verse that keeps coming to mind is found in Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. This is the foundation of what keeps me going on the rough days when I feel like the weight of the world is on my shoulders.  The song The River by Brian Doerksen is one of my favourites and seems to be ringing true for me today. If you have the chance to listen to it on You Tube, you should. Here's the lyrics: To the river I am going bringing sins I cannot bear  Come and cleanse me, come forgive me Lord I need to meet you there  In these waters, healing mercy flows with freedom from despair  I am going, to that river Lord I need to meet you there  Precious Jesus, I am ready to surrender every care  Take my hand now, lead me closer Lord I need to meet you there  Come and join us, in the river Come find life beyond compare  He is calling, He is waiting Jesus longs to meet you there  He is calling, He is waiting Jesus longs to meet you there  Precious Jesus, I am ready to surrender every care  Take my hand now, lead me closer Lord I need to meet you there  Take my hand now, lead me closer Lord I need to meet you there

A Happy Post

Just the other day it kind of hit me at how much Sarah's speech has taken off. Lots and lots of words are coming from her. I'll admit, sometimes I still don't understand her and her sentence structure is still very immature but for a good amount of time, she's moderately understandable.

• She's using the pronouns "me" and "you" correctly.
• She can FINALLY say her age correctly. She's been saying she is "3" since she turned three in 2011. She never did grasp four years old.
• Although not consistent, words like "am", "are" and "is" are becoming more fluent. For example, "I am Sarah" as opposed to "I Sarah". 
• This morning she grabbed two pencils and said "they match".

I am truly thankful for the advances she's been making. I try hard to find the balance of encouraging her to learn new things while at the same time letting her figure out stuff in her own time. I can't force development on her but I will teach gently and provide all that I can to better her development!

Individual "Development" Plan

On a daily basis I need to remind and encourage myself that it's alright that Sarah is not at a kindergarten level. Some days it's easier than others as is so many other things. Something I thought of creating was a personalized "Individual Development Plan". In the school system, it's more commonly known as an IEP or Individualized Education Plan. I felt if I changed the word "education" to "development, I would be less focused on educational learning at this time. I do understand the importance of education for her, but the typical three year old isn't expected to do kindergarten so why should Sarah?

A short time ago, I was fortunate to grab a quick breakfast with my sister without our kids! That in itself was a nice treat! We chatted for a while about some things that I could do to put in a program plan for Sarah and with some of Alicia's ideas this is what I came up with:

Sarah’s Individual “Development” Plan

September 2013

Summary:

Sarah’s development is in the range of a 3-3½ year old. Therefore anything we do with and for her must be developmentally appropriate. 

Strengths:

• Sarah is very easy going and very compliant. She can be encouraged to do an activity with very little effort. 
• She loves to play with toys, especially dolls, lego and play doh.
• She has the attention span of a typical three year old.
• She loves to please people and be around those she loves.

Goals:

• I would like to see us work on Sarah’s attention span when she is engaged in an activity. This would also include cleaning up her mess before moving on to another area. (social skill)
• I would like Sarah to work on helping chose her own clothing and (other than diapers) be encouraged to do as much of her dressing as possible. Help is always there but so is supporting independence. (life skill)
• Although she isn’t ready for kindergarten academics, I would like us to talk about the colours in her world. I may or may not focus on one at a time but we can use colours to describe objects often in daily conversations. (academic skill)

Possible activities and ideas:

• Sorting various objects into appropriate colour piles. I have lots of small manipulative toys that would be work for her. This can also be done with the Duplo or other puzzles that we have. Books that talk about colours would be beneficial too.
• Labelling her dresser drawers with pictures to indicate the clothing in each. 
• Social stories or story boards for getting dressed. For instance, she needs pants, a shirt (or a dress) and socks. 
• Stay with her for an activity for longer periods of time. If she indicates she’s done, encourage an additional 3 or 4 minutes. Use a timer on a phone or the microwave as an audible cue for her. Also to ensure she works at cleaning her mess before moving on.

So proud of her matching colours and shapes here!

Tantrums and Tears, Monsters and Fears

Yeah, that about sums up what we've been going through lately. Of course, developmentally, all these things are appropriate since they usually occur when children are 3 years old. It then makes sense why Sarah would be going through these stages as well.

• Tantrums and Tears: They don't look like your stereotypical fit with screaming and kicking wildly on the floor. She's always been a quiet crier, in fact I think I recall my sister saying she sounds like a little kitten mewing. Her tantrum is her wanting something and repeating it over and over and over. And while she's crying, she is almost impossible to talk to or reason with. Tonight for example it was her needing to sleep in my bed. She repeated "I need mom bed!" I'm sure she said it while crying in a panicky voice 30 or more times. I knew I had two choices. One, put her to bed, tuck her in and leave. She'd likely still cry, possibly till she got herself so upset that she'd be sick. That really isn't Doug or my parenting style. Two, I could pick her up, settle her under my covers and know she'd be sleeping in minutes. Tonight, I chose the easy road. Now, I will say, every night, we encourage her to go to her own but sometimes at the end of a long day, I just don't have the fight in me. 
• Monsters and Fears: Again, this is a very typical phase in a preschooler's life and if we look at Sarah's developmental age, it would seem appropriate that she'd be experiencing fears. Sometimes the fear will come as I'm putting her to bed and she will start crying that there are monsters in the room. I try desperately to tell her that the room is safe and there's nothing wrong but again, she is really hard to reason with. She also will cry out in the night, panicking and searching for me. Quite often in the morning she'll be snuggling in my arms telling me she had a bad or scary dream. She of course can't tell me what the dream was about so all I can really do is console her as best I can.

Speech Assessment, July 2013

Day 1

Well, like most nights before a test or assessment, I didn't sleep very well on Monday night. The day dawned bright and early as Sarah and I headed to the Health Unit to meet Tracy, the person who would do the assessment. Very shortly after we sat down, Sarah indicated she wanted to go home. Not a real surprise there. Her mood changed quickly though as she saw Wendy come alongside Tracy. It was (for me) a relief to see her there as well, knowing there'd be some moral support and someone who knows Sarah well.

The first part of the test was to measure where her receptive language skills are.

"There is no standard set of symptoms that indicates receptive language disorder, since it varies from one child to the next. However, symptoms may include:

• Not seeming to listen when they are spoken to
• Lack of interest when story books are read to them
• Inability to understand complicated sentences
• Inability to follow verbal instructions
• Parroting words or phrases (echoalia)
• Language skills below the expected level for their age

Receptive language disorder means the child has difficulties with understanding what is said to them. The symptoms vary between individuals but, generally, problems with language comprehension usually begin before the age of four years."

References taken from HERE

From what I can remember of the testing was Sarah looking at pictures and answering questions either verbally or by pointing. She'd be given four pictures to chose from (similar but different) and chose the one that fit the description that either Wendy or Tracy said to her. Once the sentences became more complex, she lost interest and we stopped at that point. For instance, "point to the picture where the girl is climbing and the boy is swinging." Another part that she struggled with was seeing three pictures and needing to point to the two that went together. She didn't like just pointing to one and she couldn't really answer why two would go together. An example would be a picture of blankets, a brick and a pillow. I think she knew that a blanket and pillow went together but could not tell us why. I did think that some of the correct answers were more of a fluke since she just wanted to be done. 

We will head back tomorrow to complete the testing to look at her expressive language. 

Once again though, she was very entertaining with her oversized yawns and fake sneezes. She always knows how to charm people!

Day 2

Well, I slept better last night than I did the previous. One downfall of today: Sarah crawled out of bed with me. At 5:55am. My first thought was "this is going to be one of those very long days." I am thankful for early morning appointments because at least she'll have only been awake for three hours rather than a possible 6 or 7 which puts her in less than fine form. Once she's been up for a good part of her day, the mood and attitude go downhill fast.

Today's testing was going to focus on expressive language.

"Symptoms of expressive language disorder differ from one child to the next and depend on the child’s age and the degree of the impairment. Common symptoms include:

• Making grammatical errors, leaving off words (such as helper verbs) and using poor or incomplete sentence structure (for example, ‘He going work’ instead of ‘He’s going to work’ and ‘I talk’ instead of ‘I can talk’)
• Using noticeably fewer words and sentences than children of a similar age
• Using shorter, simpler sentence construction than children of a similar age
• Having a limited and more basic vocabulary than children of a similar age
• Frequently having trouble finding the right word
• Using non-specific vocabulary such as ‘this’ or ‘thing’
• Using the wrong words in sentences or confusing meaning in sentences
• Relying on standard phrases and limited content in speech
• Sounding hesitant when attempting to converse
• Repeating (or ‘echoing’) a speaker’s words
• Being unable to come to the point or talking in circles
• Having problems with retelling a story or relaying information in an organised or cohesive way
• Being unable to start or hold a conversation and not observing general rules of communicating with others

Expressive language disorder means a child has difficulty conveying information in speech, writing, sign language or gestures. The child may not use correct grammar, may produce very short phrases and sentences, and may have a small vocabulary. A speech pathologist usually assesses and treats this impairment.

References taken from HERE.

Today Sarah had to look at pictures and fill in the blank. For example "the boy is running, the girl is _______." (sitting) Or "this boy runs, this ______ sits." (girl) She got the first few right but wasn't able to use the word in the proper context all the time. The third part was looking at pictures and reciting what the image was. We got through the first few ok but lost her on footprint, telescope and firefighter. The final section was for Sarah to recite what she heard said. She did well with three word phrases but once they became more complex, she lost interest, probably because it was too hard for her.

Although I don't have the official results in my hand right now, the testing showed that both her receptive and expressive language skills are in the 0.1 percentile. That's a really low number. I didn't even know a scale went that low. In other terms, Sarah speaks like a young three year old. Kind of goes with the rest of her developmental stages.

I left the Health Unit with a very good idea of where Sarah is at and received some ideas on how to work on expanding her vocabulary. Although I knew her speech-abilities were not on par with her peers, it was slightly deflating. But, I do know that Sarah is still the same person she was yesterday and nothing will change that!

PS. If you found me through Ellen's Blogger Link Up, I'd love it if you'd follow my blog as well. I will do the same for you!

Pediatrician Appointment {02.26.13}

The day dawned bright and clear for our quarterly pediatrician appointment.  Much to my dismay, the little patient woke up kind of "off" her normal self.  I wasn't totally surprised since I've noticed that for about 3 days now, she's been whiny and her appetite had diminished.  Today was no exception.  She didn't eat anything, even when offered pink cheerios and bananas which are her favorites.  She cried when I got her dressed and complained most of the way to the city.

We arrived with time to spare and waited just a few minutes before being ushered into the room.  And then the nurse walked in.  And then the waterworks began.  It took two tries to get her weight done and you would have thought we were torturing her by trying to see how tall she was.  *sigh*  We quickly took a head circumference measurement and once the nurse was done, so was Sarah.  The desperation in her tear filled eyes as she pleaded with me to go home was almost too much for me to bear.  Every ounce in me wanted to scoop her up and bring her home to where she wanted but of course, we can't always do what they want.  And often it's for their benefit.  Sadly, she didn't understand.

Soon after, the doctor walked in and she greeted him with a "nice to meet you, bye".  He went through the whole check up process, looking at her ears, mouth, listening to her heart and lungs.  Everything checked out ok.  He was supportive of the cutting out dairy but did suggest we add some vitamin D and calcium supplements to her diet.  Some of the not-so-good news is that she didn't grow much at all since November.  Although he didn't appear overly concerned, he did encourage me to keep feeding her whatever we could.  I told him that I will be homeschooling her in the fall and would design a curriculum that would tailor to her specific needs and learning abilities.  He was good with that.

And the measurements are as follows:

Weight: 31.3 pounds, 5th percentile (31 pounds, 7th percentile in November)
Height: 39.6 inches, 10th percentile  (39 inches, 13th percentile in November)
Head circumference: 45.7cm, below-4 Standard Deviation (45 cm, -4 Standard Deviation in November) 

Minutes after we got home, she just laid on the floor... recovering.  It's really hard to me knowing that the medical profession is so stressful for her.