Saturday, September 9, 2017

My Little Boy

This morning a wave of nostalgia hit me. I started reminiscing about Benjamin's baby and toddler days. I remembered the chubby hands and cheeks, the high-pitched giggles and squeals, and the constant kisses and cuddles. I can't help but share a few of my favorite pictures from those early years...





Now, I may be a bit bias as his mother, but can you say CUTENESS OVERLOAD!!! How is it that my chubby baby is now a growing 8-year-old and big brother to a little sister and brother? If I had a dollar for every time I have heard someone say, "Enjoy them while they're young because they'll grow up so fast!"...Well...

Honestly, I used to get so tired of hearing people say that, especially before our other children came along. When you have a child with developmental delays certain things feel like they are moving at a snail's pace. Sometimes I wondered just how long the "baby stage" was going to last...

When will he be able to roll over?

When will he be able to sit up?

When will he crawl?

When will he walk?

When will he be able to eat and drink independently?

When will he learn to speak?

How long will he be in diapers?


In reality, there are some of these questions we are still asking, yet many of them are now distant memories. Though many days feel long, years are flying by, and sometimes I wish I could just hold on a little bit longer to certain seasons. Ironically, I often catch myself telling other young moms, "It goes by so fast!" Each stage holds its own challenges, but each stage is unique and precious, and I don't want to take any of them for granted. (There are too many great pictures--I have to share just a few more!)







Earlier this week Benjamin had an eye check-up appointment. The waiting room was full of parents and children as we waited for our turn to be called back. My son was restless, but overall he handled himself extremely well. He sat in my lap or stood in front of me bobbing up and down as I sang him some of his favorite songs. He occupied himself with his unique little vocalizations and characteristic hand-flapping. He tried to wander off exploring a time or two. He hugged my neck like a small child wanting some comfort and reassurance. In short, Benjamin was simply being Benjamin--the little boy I love and cherish... 

...However, the longer we waited, the more aware I became of the looks coming our way from other adults, as well as the unabashed stares from other children. I get it. My son's sounds and behaviors that are so familiar to me are out of the ordinary for others. Things that are different draw attention. No one said anything, and I don't want to presume what people were thinking. I was realizing, though, that we are in a new season. When my son was small, he drew lots of attention because people were simply smitten with his cuteness. He seemed to make friends everywhere we went. (I even had a particularly bold stranger come up and plant a kiss on his cheek when he was a toddler!)  I still think he's an incredibly cute kiddo (more potential mommy bias!), but he's older, and things are changing. And that's okay... 



Benjamin is happy. He is content in who he is. He knows that he is loved. He is secure. He is oblivious to the stares of others. He only knows how to be himself--no pretense, no guile--just a beautiful simplicity...

...And I am PROUD of my son! By God's grace he has overcome incredible hurdles, and I know there is so much we've yet to see. My little boy is growing up, but I still get to enjoy an abundance of kisses and cuddles, just as when he was little. He still wants to crawl up in his mommy's lap. His face still lights up with glee when I pick him up from school each afternoon. I never want to take his sweet affection for granted. 

On the evenings that I put Benjamin to bed (Shawn often does while I take care of the younger two), I am almost always sure to tell him "Benjamin, Mommy loves you so much. I'm proud of you. I'm so happy you're my son!" He smiles and laughs and hugs my neck. I pray over him, and then he giggles as I whisper the familiar words in his ear, "It's bedtime now. Mommy's going to turn on your music, turn off the light, and shut the door. I'll see you in the morning. I love you!" It's our little routine that we've had for years, and he loves it. 

So much life has happened in the eight years since my son's birth. I look back with gratitude for the experiences we've had, and I look forward with expectation for what the future will hold. No matter how many years go by, though, Benjamin will always be my little boy!





  


Saturday, August 26, 2017

Paths to Independence

With his hands clasped in ours, Shawn and I led Benjamin through the double doors of the Paths to Independence (PTI) school for autistic students to attend their open house and view their new (to them) facility. Crossing the thresh hold represented so much for our family. It was the glowing reviews for this unique school that prompted us to pursue having our son tested for autism, which was confirmed in May. We are in a brand new season of learning about Benjamin's dual diagnosis and providing the best opportunities we can for his growth and development. His enrollment in PTI is a huge answer to prayer. The school is private and accredited, and employs a very large staff, ensuring the students have the vital one-on-one interaction they need to thrive. As a result, the price of tuition is high. Thankfully, most students are eligible to receive a large state scholarship, greatly reducing the cost. Benjamin was approved, but we still needed some additional assistance. Through fundraising efforts and the generosity of friends and family, we were able to cover nearly half of the remaining cost of his tuition. The leftover amount we owe is much friendlier for our one income family. We are beyond grateful that the way was made for our son's education this year! Back to the open house...

Since their recent founding in 2012, PTI was operating out of a former daycare facility, as well as renting some building space across the street. As the school has quickly grown it became necessary for them to find a larger facility. Thankfully, they are now able to rent a former elementary school building in the heart of our town! Benjamin was given the opportunity to attend a few free days during their summer program before they transitioned to the new building. I had been impressed at how efficiently they had used the space they had to work with prior, but it was thrilling to see the new opportunities available for the staff and students now that they are housed in an actual school building!

Our first stop was in Benjamin's classroom. It was spacious, bright, and inviting, and our little guy wasted no time in wandering around and checking it all out! His initial look of surprise as he processed where we were quickly changed into a smile of delight. There is no doubt that he loves school. He was especially excited about an open area of carpet and happily planted himself in a nice comfy spot as he rejoiced in the new, yet familiar surroundings!



 

Once we convinced him to relinquish his spot on the carpet, we headed across the hall to the large resource room designed for his class. It was full of sensory stations, as well as tables and chairs where the younger students can eat their lunch. This room is designed to compliment the main classroom, and it offers a place for the students to go if they need a separate space to calm down should they become over-stimulated (a common need for children with autism.) Once again Benjamin was happy to explore, and Shawn had a bit of fun himself...I'm sure he'll forgive me for posting the picture!!!


  

  

Next we headed to the gym, which offers a large trampoline, a ball pit, sensory swings, etc. Benjamin enjoyed wandering around, but his highlight was getting up on the trampoline. We are still working on his balance, so he prefers to lay on his stomach, but he enjoys gentle bouncing. When Daddy got in with him, his excitement hit an all time high! It was so much fun to watch him so clearly enjoying himself! (Not to mention Shawn...)


 

During our time there that evening we also viewed the two separate playgrounds and spent time visiting with teachers and staff. One thing that really warmed my heart was the multiple, first name greetings my son received from so many as we walked the halls and visited the rooms. As I mentioned earlier, Benjamin attended some free days over the summer, but it was clear that he was already known and loved by the staff. Paths to Independence is a small school, but it has experienced rapid growth. When it made it's initial launch five years ago, they had one student enrolled. By the end of the year they had four full-time students and several part-time students. They received their accreditation the following year, and they are beginning this school year with 46 students, spanning elementary to high school. In the school's own words:

Paths to Independence was founded to offer a supportive school community for children with autism and their families. We believe all students can learn and focus on helping each child develop as much independence as possible in all aspects of his/her life. PTI believes all children will thrive in an appropriate environment, so we will exhaust all possible options to help a child succeed. Paths to Independence believes that a strong family is essential for a child's success. Part of our mission is to give families and students the tools they need to be a full part of their communities. Paths to Independence accepts all children with an autism spectrum disorder.

  

At the time of this writing, Benjamin has attended seven full days of school, and so far it's been a wonderful experience. He is thriving within the intentional structure of the days as he works on realistic goals physically, socially, and educationally. His classroom teacher is a gentle, grandmotherly woman with a big heart for the children and years of experience. He does very well with her. He is also quickly becoming a favorite among the aids! Each morning I drop him off in the big, circle drive where a few of them are waiting to escort students inside. My son gives me an affectionate goodbye and does his little happy dance of bobbing up and down, all geared up for another day of school. They love it! I pick him up in his classroom each afternoon and find him calmly working one-on-one with an aid. He is always delighted to see me and commences his happy dance once again! 

We are already seeing some little signs of breakthrough in his attention and socialization. One day after school last week his teacher told me that Benjamin happily engaged in play with her using a sensory ball for ten minutes! This may not seem like much to some, but it has been a big deal for us if he will do something like this for even two minutes. The next day he even chose the sensory ball over a snack, and this kid NEVER turns down food!

The most touching moment for me thus far came yesterday when I dropped my son off for the last day of the week. His teacher was intentional to come out and stop me before I could take off. We had a meeting with her before the school year began, and I had mentioned that I wrote a book about our early journey with Benjamin. I told her I would be happy to bring her a copy, if she was interested, so she could have a better understanding of our son's history. She happily agreed, and I gave her a copy at the end of last week. Yesterday she told me that she had already finished reading it and had passed it along to some of the aids. She found it touching and inspiring, and with tears in her eyes she told me that it brought back some personal memories as she began to unfold her own story...


She told me that one of her children, a daughter, was born with a congenital heart defect (as was Benjamin). At first my heart sank, thinking I knew where her story was going, but I was wrong! Her daughter had open heart surgery while she was in the third grade, and was one of only three children in the USA to survive this particular surgery up to that point in time! She said that my book brought back so many memories--things she had not thought about for years. It was then that she revealed to me the most stunning part of her story. Her daughter is the founder and director of Paths to Independence! I never even knew they were related! She said to me, "The Lord knew she had important things to accomplish." WOW!

I thanked her for sharing her story and told her how very thrilled we are to have Benjamin attending PTI. She re-emphasized how well he's doing and how happy they are to have him. He is their first student with the dual diagnosis of Down syndrome and autism, though she and her daughter have both worked with children with Down syndrome in the past. I mentioned that I am learning that this is a good dual diagnosis to have because the Down syndrome often helps as a buffer for some of the struggles associated with autism, especially in areas such as socialization, affection, and overall temperament. (Now I realize that there are many other factors that come into play with this as well, such as home environment, personality, cognitive ability, etc...). She affirmed this observation and said that her daughter has always been excited to have children with Down syndrome present with children with autism because they often become good role models for behavior. They feel they are already seeing this at work with Benjamin. 

As we said our goodbyes, and I drove away, my heart was overflowing with gratitude to the Lord. Each morning as I drive my son to school, one of the things I pray is that he will be blessed AND be a blessing. In such a sweet and unexpected way, He was showing me that my prayers are already being answered. It's going to be a great year! 





Saturday, July 22, 2017

The Nature of Trials

I really enjoy the memory app on Facebook. You know--the one that shows you what you posted on that day in previous years. It brings a smile to my face to look back on memories, some of which I may have forgotten. Sometimes it's a sweet picture of the kids, sometimes it's a funny memory of something said or done, sometimes it's a word of encouragement from a dear friend, and sometimes it's a reminder of the Lord's amazing faithfulness. It's good to remember our history. It reminds us of mistakes made, lessons learned, and victories won. It reminds us that seasons come and seasons go. It reminds us of what is truly important in life and often brings fresh perspective.

Recently some of the memories showing up on my Facebook have been bittersweet. There was a picture recently of Benjamin as a newborn in the NICU, hooked up to oxygen as I touched his tiny hand.
 

There was also a post about me passing long hours in his hospital room following open heart surgery and my longing to hold my baby in my arms again and bring him back home.


On the day the heart surgery memory came up, I was in need of some fresh perspective. Summer's are difficult for Benjamin. Though he has been able to attend an Extended School Year (ESY) program through the school system, it is only for half a day, and it does not last the duration of the vacation time. He doesn't do well with the change in routine from the school year. He gets bored and frustrated at home, leading to extra whining and sometimes more aggressive behaviors. Many days are just plain hard, and I can feel my frustration mounting. However, when I was reminded of the difficulties of my son's first shaky months, my perspective began to shift, and I was filled with gratitude for my beautiful, miracle boy, and the privilege it is to have him with me. In that moment I dropped whatever I was doing, found my son, and just loved on him for awhile.


In the midst of these memories, I've been considering the nature of trials. No person is immune from seasons of hardship, some great and some small. Ultimately, though, that's what they are--seasons. It's hard to keep this in mind when we're in the middle of the turmoil. It's hard to see anything beyond our own present pain. It's fresh, it's raw, and it's real. It often feels all-consuming. In the latter half of Psalm 30:5 we read, "Weeping may endure for a night, but joy comes in the morning," (NKJV).

When Benjamin was fighting for his life as a newborn in the NICU and shortly after when his little body was fighting to recover from open heart surgery, it was difficult for me to see anything beyond the hardship and pain. I didn't have the awareness of what the future would hold. I didn't know that in eight years time my overwhelming trial would be a memory on my Facebook feed, reminding me to pause and give some extra cuddles to my healthy, growing son. I couldn't see the beautiful chaos of my life today with three happy, loud, energetic, and beautiful children I am privileged to call my own. 


However, there was one thing I did have even on the darkest of days--HOPE. I had hope because Jesus is King. I had hope because Jesus is Savior and Healer. I had hope because Jesus is the eternal Lover of my soul. I had hope knowing that He is always with me, and I never have to walk anything alone. I had hope because my God is good, even when my trials would try to scream otherwise. I had hope knowing that whatever the length of season, my trials are ultimately temporary because I am of the company of those redeemed by the precious blood of Jesus with the promise that one day, "...God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away," (Revelation 21:5).

It is true that trials come and trials go. Seasons shift and change, often completely out of our control. This present season will also one day become a distant memory. The future will undoubtedly hold both joy and pain. In every season, though, whether full of difficulty or delight, I want to maintain the proper perspective. In every season, I want to live with the constant reality of my deep need for Jesus. This whole life is temporary, but God is eternal. And because Jesus lives, I can have hope at all times!









Saturday, July 1, 2017

Downright Delight!

As a mother, one of my greatest joys comes from seeing the delight in the faces of my children when they experience something new and enjoyable. This has been especially true with Benjamin. He may not be able to verbalize his happiness and excitement, but he clearly communicates these emotions through facial expression, body language, and sound. Whatever emotion he feels, he expresses fully with nothing held back.

We recently took a vacation up north to visit my husband's family. It was a long, 12 hour drive that we opted to make during the night while our children slept. All three of them did remarkably well with the changes in schedule, location, and normal diet during the week we were away. The entire visit was an enjoyable one, but the definite highlight came on our last full day when we drove to a nearby lake with Shawn's dad and grandparents. His dad owns a small motor boat, and our kids were about to enjoy their very first voyage on the water!

We took Benjamin for the first ride while the younger two played on the beach playground with their great grandparents. From the moment the wind hit his face, he was hooked!




He grinned ear to ear the whole time, watching the beautiful scenery speed by as the boat cut through the water. He made his happy sounds and bobbed up and down with delight. He smiled at me and at his daddy as if to say, "This is amazing! Why haven't we done this before!" As we witnessed the thrill on his face, we were wondering the same thing.

 

After Benjamin finished his ride it was time to take the other two out. Meanwhile, Benjamin kept his great grandparents hopping as he happily wandered around the park and picnic area. Joelle and Josiah weren't quite as enthusiastic as their big brother. Joelle is my cautious child, so she was already nervous to begin with. I got a smile out of her when we first sat down in the boat, but once the loud engine started, she placed her fingers firmly in her ears and kept her head down for most of the ride. Oh well...


Josiah wasn't sure what to think either. He wasn't a fan of the bulky life jacket, and he didn't much appreciate being held in my lap when we would rather be moving. He had been immensely enjoying his swing ride on the playground prior, and he was getting pretty sleepy. In other year or so we will probably get a more enthusiastic response from him.


Before calling it a day later on, we decided to take Benjamin out for one more joy ride. And by joy ride, I mean JOY ride! The water had gotten a bit choppier as the wind picked up, and we got splashed a time or two. He wasn't sure what to think of the cold spray, so his grandpa pulled him onto his lap where the wind shield offered a bit more protection. (I didn't fair so well in the back seat...) The choppy water made for a bumpier ride, and Benjamin thoroughly enjoyed every minute of it! They say a picture is worth a thousand words, and the pictures I captured during that last ride say it all. I honestly can't remember that last time I witnessed this level of pure excitement and joy in my sweet son!




As I said at the beginning, witnessing delight in my child's face is one of my greatest joys. This simple boat ride created a cherished memory for our family that we will enjoy for years to come. Thanks for letting me share our little outing with you today, and I hope I made you smile!



Saturday, April 29, 2017

He is Still My Son

For months—if not years—I tried to ignore the signs. It was easier to make excuses. It was easier to brush them off. It was easier to assume that the behavior patterns I was seeing in my son were all related to Down syndrome or simply personality. But no matter how hard I tried, my suspicions grew…

As a two-year-old, one of Benjamin’s favorite pass times was to sit and twirl his little high-lighter yellow, stuffed gorilla in his chubby, little hands. He would study it from every angle, entirely absorbed and fascinated. It was pretty darn cute, though we always tried to encourage more interactive play. As a seven-year-old he still continuously seeks out plush toys (monkeys and Elmo are his personal favorites, but anything with limbs will do) so that he can obsessively twirl them or chew on their limbs. It is no longer cute but concerning. 

As a three-year-old, his fascination with light-up, musical, baby toys and the spinning of his See-n-Say, seemed age appropriate for his current level of play. He loved the repetitive patterns of the sounds and lights. As a seven-year-old, his interest in toys has not progressed, and he his favorite toys remain the same. They have become the common background noise in our home.

When Benjamin was only a few years old I would attend play dates with him so he would have the opportunity to be around other children. He showed little to no interest in them, but I chalked it up as his young age and current developmental level. After years of opportunity for peer interaction at school, and now the presence of younger siblings at home, he still displays little to no interest in playing with other children (unless they can sing him “Wheels on the Bus” with the hand motions)! So much of the time he seems to be off in his own little world. 


For so long I have been aching to hear my son say “Mama,” or any purposeful word for that matter. As the years slip by, his non-verbal state becomes more heart-breaking, but I continue to hold onto hope that one day he will speak.

When the repetitive hand-flapping surfaced a year or so ago, my suspicions grew even more. As a member of various Down syndrome support groups on social media, I was also becoming increasingly aware that our life with Down syndrome looks VERY different from others. But still, I struggled to admit my concerns. I was afraid that giving voice to them would solidify them, and was I ready to face that reality?

Finally, I realized that I was being selfish. I wanted to resist what I was sensing because I didn’t want to deal with the pain that may result. Benjamin is my son whom I love with all my heart. Nothing will ever change that, and understanding what is truly going on with him will make it easier to give him the help he needs. So, with a deep breath and a new resolve I told my husband, “I think we should have Benjamin tested for autism.”

There... I said it…I can’t take it back again. Shawn was surprised and resistant at first. He had been making the same excuses. He feared facing a dual diagnosis as well. I explained to him my reasoning, and before long he relented and even supported the new quest.

Where to begin? I began by contacting the pediatrician’s office, requesting a referral for testing. I was shocked by the response I received. “There is no reason to test Benjamin for autism since he already has Down syndrome. It wouldn’t change anything.” EXCUSE ME!!! At best this response was outdated ignorance. Not to be deterred I reached out to the local support group. I was referred to a child psychologist who would not require a doctor’s referral and whose services would be covered by Benjamin’s insurance. Thus, began a several month process--largely due to scheduling gaps caused by his full caseload.

There was the initial consultation with my husband and me, there were mountains of paperwork and questionnaires to be filled out, there was a one-on-one observation session with Benjamin and the psychologist, there was a joint observation session in which my husband was present and able to answer questions, and finally, there was the ending consultation that I attended while the psychologist reviewed the official results with me. This last session was less than a week ago at the time of this writing. Going in, I expected him to tell me that Benjamin is indeed on the spectrum, but I was hopeful that it would be a mild case. It was both surprising and disheartening to hear him say that my son has autism spectrum disorder level 3—the highest level. He did assure me that this can change as our son grows and develops and as we continue intervention services with him. But still…my baby boy is faced with another daunting hurdle after having been through so much since he was born.

That evening after Benjamin was asleep I snuck into his room and lay down beside him. I held him, and kissed him, and prayed over him. I told him how very much I love him. He is still first and foremost my son. A new diagnosis does not change that and never will…

This is the same little boy who opened my womb, giving me my first positive pregnancy test after over two years of trying and countless tears of longing to conceive, finally making me a mother…

This is the same little boy who flooded my heart with an intensity of love and a pain I never knew was possible when he entered the world fighting for his life…

This is the same little boy who defied the odds and was nurtured at my breast for over two years…

This is the same resilient little boy who has overcome challenges both medical and developmental, all the while teaching me that what others may perceive as little things are cause for big celebration!...

This is the same little boy whose favorite things are his See-n-Say, “Wheels on the Bus,” Elmo, and stuffed monkeys, (not to mention food!)…

This is the same little boy who has always loved to have Mommy sing to him as he holds onto my neck and bobs up and down, dancing with delight…

This is the same little boy who has flooded my heart with joy every day with his sweet smile, contagious laughter, and affectionate hugs…


This is the same little boy who re-ignited my passion for writing and became the inspiration for my first book Reflections from Holland: A New Mother’s Journey with Down Syndrome

This is the same little boy who has given my husband and me the opportunity to connect with a beautiful community of people over the years who we may have never met otherwise…

When Benjamin was a newborn fighting for his life in the NICU, we knew very little about Down syndrome. So, what did we do? We began to educate ourselves. We allowed ourselves to grieve. We reached out for support. We prayed. And above all—we LOVED our son. We took to heart the wise advice from a dear friend to “Celebrate your son every day.”


We are now at a new crossroads with Benjamin’s new diagnosis. Presently, we still know very little about autism. So, what will we do? We will begin to educate ourselves. We will allow ourselves to grieve. We will reach out for support. We will pray. And, most importantly, we will continue to LOVE our son. We will choose to celebrate him every day, through good times and bad. After all, at the end of the day, Benjamin is still our son, and he is enough!