Dual Diagnosis

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(Written 9/14 11:30 pm…posting 9/15)

Late night post…IMG_1967

Honesty time! Tonight I am scared. Tonight I am close to tears as I fill out paperwork for Peanut’s appointment tomorrow. I’m terrified of the results we might receive, and what they will mean for Peanut’s future. A mama told me today in a FB group, “No matter what the results are, Peanut is the same beautiful baby she was yesterday!” Even typing that brought me to tears. Why is this appointment so difficult?

Peanut is being evaluated for Autism.

Duel diagnosis is still somewhat new within the Down Syndrome community. Up until 10 years ago, it was unheard of. Even now a lot of doctors do not feel that a child with DS can be diagnosed with Autism as well. New research is developing and helping families get the support and answers they have needed. Roughly 5-7% of children with DS are diagnosed with Autism and that number is not fully accurate because of incomplete documentation. Because of symptoms overlapping it’s very difficult for a specialist to diagnose correctly. Often Autism gets overlooked because a lot of symptoms can be tied back to DS.

IMG_1973So why is she being evaluated? Well, it is something we considered around a year ago. We’ve noticed small traits (hand flapping, OCD, food issues, meltdowns, lack of vocabulary) and we kind of blew it off. I think we were scared it might be true. However, when we switched pediatricians this past summer, he suggested the evaluation. Her doctor also specializes in Developmental Disorders at Rady Children’s. We had seen him a few times during our Down Syndrome Clinics and just loved how he treated Jana. When we arrived at his office the first time, he had us complete a survey that I didn’t have a clue what it was for. After we were done, it flagged him to have Jana tested. He reassured us that there was still a high possibility that her symptoms are simply from DS and to not worry. Easier said than done.

Now let me explain. I am not against having a child with an Autism diagnosis. I’ve known some pretty amazing kids who are on the spectrum, so it’s not that I will be ashamed at all! My struggle is Peanut. She already works SO hard at everything. She is already in multiple therapies to help her develop. She already has odds against her. Does she really need more?!? Having a dual diagnosis will change everything! From adding new therapies, changing how her current therapies are structured, even schooling when that comes around. Especially in our area! Where services for DS and Autism are abysmal. I don’t want my baby girl to have one more thing she has to fight. Life is tough on her as it is. Adding this would just make it tougher. She deserves a break!IMG_1975

I don’t even know what to hope for tomorrow. Of course, I’d love for them to say she isn’t on the spectrum. But at the same time, I know it will answer a lot of questions we’ve had about her development. I just want to make sure we get a chance to do the best things for Peanut. To give her all the tools she needs to be the best possible girl she can be. I know this won’t change who she is. Jana is amazing! I am honestly blown away by her. This won’t faze her one bit! My girl is a fighter…I just have to learn from her strength and keep up the fight!

More info on Duel Diagnosis: NDSS

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Mama Guilt

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IMG_1794Lets talk about Mama Guilt.  You all know what I’m talking about.  Are you spending enough time with your kids?  Do you cook enough?  Are you involved enough?  Are you working too much?  Are they too independent?  Are they not independent enough?  And so on….

Now lets add in a special needs mom… Are they developing correctly?  Do they need more services?  Are you pushing too much?  Are you not pushing enough?  Do they need another specialist?  Do they have too many specialist?  Are they close to reaching milestones?  Are you holding them back?  Will they be able to attend school?  Do you want them in mainstream class?  Are they healthy?  Are you educating yourself enough?  Are you talking to them enough?  And so on…and so on…

Welcome to the life of a special needs parent.  It is full of worry and stress that you are not doing enough…or doing too much.  It’s trying to find a balance of letting your child be a child…and pushing them to do all their therapeutic needs.  Its a constant fear that you are the reason they are behind and fear that they will never catch up.  Honestly, its an odd feeling of having it all together and falling apart at the same time.

Today I got hit with mama guilt….bad!  We traveled up to Radys (2 hour drive) to have Peanut evaluated for Occupational Therapy services.  It is not offered at all in our area so that means we have to get it elsewhere.  She started the evaluation asking about her eating habits.  Some of her issues have come from the GI appointment we had so she wanted to address those.  So she had Peanut eat (snacks at therapy?! Peanut was in love!IMG_1796 Instantly she told us that Peanut doesn’t chew her food properly.  She chews with only her front teeth and is unable to manipulate the food to chew with her molars.  We’ve noticed she chews in front…but had no clue it was a problem.  She said because of this, she is having a harder time eating different foods (Meat for example) since she needs her molars to break it up.  Also, when we explained how she seems to gag when she drinks water (almost like shes drowning) she instantly came to the conclusion that is was also because of her low muscle tone in her mouth.  She said the water is difficult to swallow so she cant manipulate the water correctly to swallow the way she should.  Which explains why she often throws it up as well.  LIGHT-BULB!  Seriously, it all just made sense.  All the worries we’ve had and struggles getting her to eat, this lady provided us with answers in less than 15 minutes!  She helped us come up with techniques to do with her and recommended other foods to try.

Instantly my mama guilt kicked in.  I even asked her if she was worse off then we imagined.  We had no clue her eating habits were a problem and causing the other issues.  I felt horrible that I didn’t fight more to get her into OT sooner.  That I didn’t do enough.  That I failed her!  Are these logical fears?  No not really.  We’ve been asking almost every doctor we see why she gags when she drinks.  We’ve told them about her eating sensitivity.  I’ve fought with our local agency to get approved for OT.  It took 5 months of being on the phone constantly fighting to get her appointment.  I understand I did these things…but the guilt doesn’t.  When it comes to Peanut’s therapy and progress, I take the reign.  Juan is involved all along, but I’ve made it all my responsibility.  That also means, I feel like if Peanut is delayed more than she is expected to be, its my fault as well.  Almost in tears I sat and listened to more therapy techniques we need to start her on at home.

When we got in the car the first thing Juan told me was this isn’t my fault.  He knew exactly what I was feeling.  He saw the look in my eyes and tried to reassure me that Peanut is doing good.  He wanted to take some of the weight off my shoulders so I understand that we do everything we can for her.IMG_1797

I honestly think its because I am so terrified I will fail her.  The big kids just learned things naturally.  I didn’t have to walk them through simple things step by step.  Jana has to be taught almost every new milestone.  I’m so scared that if I don’t do things correctly, she will be even more behind than she should be.  I know this isn’t just my fear.  I’ve spoken to a couple of other special needs mamas.  We’re not sure if this fear ever goes away!

Maybe that’s the price that comes with being a special needs parent.  Maybe that worry and guilt makes us appreciate every tiny victory.  It’s what helps us keep fighting when it seems hopeless.  To attend every therapy session, every doctor’s appointment, every meeting to get your child where he/she needs to be.  The guilt drives us to do more when we feel like giving up.  The guilt makes us be better parents.  I would take all the guilt and more if it meant I get to see Peanut live a long happy life.  She is my motivation to be better.

Btw…she will be starting OT 2 times a month.  We just have to wait about 3 weeks for the evaluation to be processed then put on a wait list for therapy to start!capture1.png

Daddy Post – Value in Life

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Written by Juan – Peanut’s DaddyIMG_1303

Lately their has been a lot of talk about Iceland due to a recent report by CBS. The CBS article addressed how Iceland is trying to eradicate Down Syndrome completely. Iceland’s stance is that all women should be made aware of the possibility of their child being born with Down Syndrome via screening. Since the screening was introduced in 2000 nearly 100 percent of women who receive a positive diagnosis have chosen to terminate their pregnancy.

IMG_1337Although we are talking about Down Syndrome, the underlying question we must address is the value of life.

I remember shortly after my wife and I adopted our daughter I was asked by a Dr. “If her mother knew that she had down syndrome, why not just terminate the pregnancy instead of putting her up for adoption?” I can honestly say that I had to walk away because I was afraid of how I would respond.  This question also made me stop and think. We brought Jana into our home at 1 month old, tiny (since the name Peanut), cute as can be and full of life. Jana’s first year of life was very eventful. She required medical treatment outside of our county (2 hours away) and initially we had appointments several times per week. Jana had appointments at the Down Syndrome Clinic along with several follow up appointments with ENT, Cardiology, Pulmonology, Pediatric Specialist, Blood Screenings, and a few hospitalizations due to respiratory and low Oxygen concerns. In order to attend all of her appointments (which I insisted) I had to file for FMLA coverage.  I very quickly used up my 160 hours of vacation time I had accumulated and we accumulated over $4,000 in debt due to travel, hotel stays, specialized testing (still waiting reimbursement). I don’t say this for attention, but for understanding. Although my wife and I focused on her well being, others were not able to see past the hardship. At times we would only sleep 2 to 4 hours per night due to her sleep apnea, taking shifts as needed and pulling all nighters on weekends. We were afraid to talk to friends and family at times because we were afraid that people would judge Jana, or feel like we did the wrong thing by taking her in. We spent as much time with our other biological children (Joey, Mason, Jaylen) keeping them informed of her status, pending tests and upcoming medical procedures in order to address their concerns for their sister and our family.IMG_0904

I’m not going to lie, it was hard. Being away from our other kids at times for days, nights, weeks, lack of sleep, minimal time with my wife, financial stress and being helpless to help our daughter at times. Through all of this, not once was the value of Jana’s life questioned. Their were no regrets about her adoption. From the moment that she was placed in my arms by the social worker we bonded and a life long connection was formed.  What I came to realize though was that others were not able to see past her diagnosis, past her appointments, past the zombie like appearance we sometimes reflected due to lack of sleep. They looked at us with pity and at times questioned our decision.

At that time Jen and I made a decision, to share our experience with others. Jana’s blog was created and we began to post as many pictures of her as possible. Initially we were unable to post anything due to her “foster” status but we walked the line as much as possible. We wanted to introduce our friends, family and the world to the Jana that we instantly fell in love with. We wanted to help others to see past her diagnosis, and fall in love with the same “Peanut” that we fell in love with instantly.  We wanted them to see her smile which brightened our day, hear her laugh which instantly made us smile, see her progress (even if minimal) and share in our pride for her hard work and accomplishments. We posted as many pictures and videos as possible in order to introduce the world to “Peanut”.

IMG_0728In fact, just this past week Peanut found fame, with some of her video’s being posted by several sights and views quickly climbing above 1 million, 2 million and now somewhere above 5 million. With those views came many comments of support and encouragement and of course discouragement and questions of the value of her life. If you know us personally you know how protective I was (AM) of my peanut. My initial desire was to respond out of emotion but as I read the comments I was saddened. Not because of what was being said but because of how much these people were missing out on. You see, they did not know my Peanut. They questioned her progress, “She’s taking a few steps using a walker, big deal” not knowing that these simple steps were a result of months of hard work and support from others who love our JANA as well (PT, in home therapy etc). I felt bad for those that were so shallow that they were unable to see past her diagnosis, were unable to see her beauty and share in her love. And then something happened. Some of our online friends began to reply “Hey, that’s Peanut”, “That’s Peanut and she’s made so much progress”, “That’s peanut and you need to read her story on her blog”. Others began to step up and defend my daughter, because they had also invested their time in her and had fallen in Love with who she is.

In her short life (2 years) peanut has changed our life for the better. She has brought our family closer. She has taught us about overcoming adversity, working hard to achieve small steps (literally). She exposed us to an amazing community of support online, provided us with the opportunity to meet some amazing families and loving children. We have shared our story with others, prayed for families we have never met and cried for families we may never meet. All this was possible for one reason. Jana’s biological mother saw past her diagnosis and found Value in her life. Although she was aware that she would be unable to address her medical needs she made the selfless decision to place her daughter up for adoption and not terminate her pregnancy.IMG_7539 (1)

Choosing life not only changed our life for the better it has also allowed Jana to impact the life of others worldwide through her smile and her laugh. In her short time here she has helped us gain a better understanding of the value of life. What Iceland is failing to recognize is that that they are not just eradicating Down Syndrome in their country. They are killing a beautiful life who may happen to be born with Down Syndrome. You cannot debate the potential of that life when you never give him/her the opportunity to live. In her short life Jana has taught us so much more about “abilities” despite being labeled with a “disability”.

Is this the World We want?

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Some of you may or may not have seen the articles and reports about Iceland and Down Syndrome.  Currently about 3-4 children with DS are born in Iceland PER YEAR!!  Yes, that’s right…each year only 3-4 amazingly special kids are given the chance at life.  Often times the only reason of these births occur is because the early screening was wrong.  Because of this, Down Syndrome is almost fully extinct in some countries.

Check out the article here: “What kind of society do you want to live in?”: Inside the country where Down syndrome is disappearing

Why is this important to us?  Because this epidemic is spreading.  These early screening are also being used in Australia, Europe and the US.  The need for “perfect children” is taking over the desire for life.  Doctors are pushing termination on new mother’s when they are uninformed and emotional.  I’ve spoken to a few new mama’s who said almost every Doctor appointment they have they are asked multiple times if they are sure they don’t want to abort.  This is horrible!!  The value of any life is not cherished anymore.

I understand, I know DS is NOT for everyone.  This is a lifelong, stressful, scary, and amazingly beautiful commitment.  But to say that Jana’s life is less valuable than our other children is ridiculous.  God has a plan and a purpose for her that is bigger than any of us can imagine.  She and all her other DS buddies make our world a better place.  Their determination, their tenacity and joy is contagious to those around them.  To eliminate them from our society would be detrimental to us all.

The problem is not these mama’s who are confused and scared.  All parents are terrified when they find out their child has something wrong with them.  The problem starts at Doctors who push termination.  Instantly they view DS as a defect that should be removed.  Instead of educating these families of the new progress the DS community has had.  Adults with DS are productive, happy members of society now.  Things have changed in the last 30 years and that should be encouraged not down played.

I saw on twitter a quote I want to share from actress Patricia Heaton (@patriciaheaton).

“Iceland isn’t actually eliminating Down Syndrome.  They’re just killing everybody that has it.  Big difference.”

We need to remember that ALL LIFE MATTERS!!  This shouldn’t just be a discussion of DS termination.  This is life termination.  Our lives are ambushed daily but the petition to be accepting, tolerant and loving to those around us.  But yet, when a innocent child is born with slight differences, we instantly want to throw them away.  Where is the respect for these tiny lives?  Where is the love for life?  downrightperfect

Recovery

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IMG_1336Peanut had her tonsils and adenoids removed on Thursday.  The doctor said it was successful.  During the procedure he did a scope as well…and because of that we will be monitoring Peanut a little more until a plan is in place.  Don’t want to go into details about it right now.  After we see him in September for her follow up I’ll bring you into the loop.  Right now we are focusing on getting Peanut back to 100%.

So far she has been doing pretty great.  We only stayed in the hospital overnight because she was eating and drinking enough.  We were actually incredibly surprised at how great she has been.  We expected the recovery to be horrible.  It seemed like things were progressing quickly.  Then last night hit!  First she was so uncomfortable that she didn’t lay down until 1:30 am.  Honestly Juan and I passed out so we are not even sure what time she finally fells asleep.  However, at 4:30 she woke us up screaming.  After more Motrin and some snuggles, we finally got her back down around 5:30.  She woke up again around 11 and has been miserable since.  She is refusing to eat or drink because swallowing hurts so much.  Its so hard seeing her in so much pain and not being able to help.  We are praying this drop passes.  We were prepared (kinda) that the 4th or 5th day after surgery is always the worse.

IMG_1380So right now Peanut has been our focus.

Then the craziest thing happened yesterday!  Peanut went viral!  Like legit…over 1 million views!  How did this happen?  I’m not really sure.  We have her videos going through a company called Newsflare.  Because there have been so much bullying online against the DS community, Newsflare monitors when the videos have been downloaded and notify us.  So two UK media sites posted her walking video on their site and it went crazy.  As soon as I saw it and saw so many comments my heart stopped.  In the past I’ve read horrible hateful things on some of Peanut’s buddies images and videos.  I was expecting the worse.  There were a handful that I read that filled me with anger.  How people are so mean is beyond me.  But was surprised me was how many people stuck up for Peanut and attacked those mean people right back.  Now, I can’t condone words that were said, but it touched my heart that strangers stuck up for our baby girl.  She received so much love and support from so many people.  I’ve always known Peanut is destined to change the world!  She has already changed it for those who love her.  I am honored to be her mama and watch the world fall in love with her to!  Who knows, maybe one day you’ll be watching her on TV or seeing her beautiful face in a magazine ad 🙂

A Nervous Mama

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IMG_1265So the day is almost here.  Surgery day!  Peanut will check into the hospital at 6 am on Thursday morning to have her tonsils and adenoids removed.  I know, this is a simple procedure and its not a big deal.  Let me tell you, to a mama of a 2 year old…this is a big deal!!!  We have to hand our baby girl over to strangers and pray that they will return her to us safely.

I just finished reading this article… Anesthesia & Down Syndrome  and now my anxiety is even higher!!  My husbands response was “Stop reading these articles, pray and trust that God will take care of her!”  I know that God loves Peanut even more than I do.  I understand that He has a plan for her far bigger

than I can ever image.  I just need to stop focusing on

myself right now…and remember my job is to rely on Him.

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Please keep us in your thoughts and prayers this Thursday.  We for sure have to stay one night however the Doctor did tell us there is a possibility of a 2-3 night stay.  I will try to keep you posted.

 

Every good and perfect gift…

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card1FrontWhen Peanut came into our lives we were fully aware of her diagnosis.  We had the option to say no.  We had the option to say Down Syndrome was not for us…and no one would judge or really even know.  Truthfully, a few other families before us said no.  Thank goodness they did…because if not we wouldn’t have had the option to say yes.

I’ve recently spoken to a couple of mamas who were struggling with their prenatal diagnoses.  They know when their sweet baby is born, they will face a multitude of issues.  They have doctors and health care providers constantly asking if they would like to terminate the pregnancy or set up an adoption.  As if this child is less worthy of love and life because of the Down Syndrome.  Instead of these mama’s receiving support from their doctors, they are pressured into decisions they are not prepared to make.

You see, when a new family receives a diagnoses of any kind, especially Down Syndrome, they need to first grieve the loss of the child they had prepared for.  This is extremely common.  Some new families struggle bonding with their children right away, some cant seem to see past the diagnoses, and some cry for days on end.  All of these reactions are completely normal.  No one wants their child to be “different” in the world.  We never want them to have to see specialist after specialist, prepare for surgery at young ages, work harder than anyone to just achieve simple milestones.  The idea of having a special needs child is terrifying, but let me tell you, the joy overcomes the fear!

I want to speak to the new mama’s out there.  I know right now you are scared.  You are feeling alone, secluded from your friends and family, you feel lost and worried that you will fail your child.  You are confused about the services your child needs, scared your mess something up and will affect them forever.  You are terrified of the future, not just theirs…but what will yours be now?  You are scared that no one will love and accept your baby as much as you do!  I know you are feeling a world win of these and more, because I have felt the same.  But I want to tell you, you are not alone!  You have a community of mamas at your finger tips.  They will cheer with you at each new milestone, they will worry when doctors apts come up, they will cry surgery is needed.  They will pray and love your child almost as deeply as you do.  They will send you encouragement and love, because no one else in the world understands what your facing as much as they do.  You are not alone!  Your child will grow and become a star in the world.  A special piece of humanity that God just had bigger plans for.  You will experience more love and excitement than you ever have faced.  You will learn to see joy in the smallest achievements and feel love when words cannot be spoken.    Your child will make you stronger than you ever realized you were and help you love even deeper.

I want to leave you with this poem.  Its kinda been passed around the DS Community a bit.  But it is there perfect example of what it is like to be in this special club.  Hold your head up high mama!  God pick you out of everyone to raise this special angel.  Be proud of this honor!  Not many people get to join our club 🙂

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Bye Bye Walker!

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IMG_0936Yesterday Peanut said good-bye to the walker our Physical Therapist gave her about a year ago.  We walked into therapy with it, walked out without it!  No…this doesn’t mean she is walking on her own now!  But we transitioned to another “walker”  Even though she walked like a pro in her walker, our goal with Peanut has always been to move her into something that is more of a toy (baby stroller, cart, wagon) instead of the medical walker.  This will give her more independence as well as not draw huge arrows to her to show everyone that shes “different.”

Last week, while hanging out at our friends house, we had Peanut try out her daughters shopping cart.  I was worried it was going to be too tall or even tip a little and then she would be scared to try it again.  But nope!  It was perfect!!  She voluntarily pulled herself up on it and took a few steps.  Instantly we knew we needed one of our own!!

So we purchased the Melissa and Doug Shopping Cart  It is a little more pricey than we would normally pay for a toy.  However, it is super sturdy, wont tip and realistically because of her size, Peanut can use this for years!

I took it with us to Physical Therapy to show Betty and she loved it!!  She is even planning on purchasing one for her to use there.  Since this has been the only thing Peanut has ever walked with on her own, it is worth transitioning her to it full time.  So now my job kicks in!  We are helping her use the cart as much as possible.  Planning on taking it with us wherever we can and encouraging her to be more independent with it.

I was so proud that she has made this progress!!  I feel like we have been pushing her for this for forever!  This past month she has really found her strength.  There’s no way to determine how long she will still need assistance to walk, but she is heading in the right direction.  Part of me is terrified of her fully independent and running around everywhere!  She’s hard to keep controlled as it is 🙂

So be on the look out for us at the store if your a local.  You might just catch Peanut shopping on her own 🙂

Don’t Judge

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summerspecial6Recently Peanut had a cancer scare.  We didn’t share this info with very many people, because we were praying it wasn’t a very big deal.  After attending the Down Syndrome clinic this past May, one of the specialist wanted to run blood work.  Remember I mentioned they tested her for Celiac Disease?  Well that came back clear and normal, however at the time her thyroid hormone levels were very low.  This could mean something simple as hypothyroidism, where medication is helpful.  To something more extreme as thyroid cancer.  Our doctor wanted to run testing again to make sure that Jana just wasn’t fighting an infection at the time.

We waited two weeks to re-take the test, and then another week to get the results back.  To tell you our stress level was through the roof is an understatement.  We were so terrified of the possibility of cancer.  I broke down completely instantly when I pictured my beautiful girl going through treatment, loosing her hair, having to fight non stop.  I’ve witness other families go through the same thing.  My heart as always broke for them.  Suddenly we were facing our biggest fear.  Thank the Lord, all the test came back clear!  They are going to be testing her again in 6 months to insure, but as of right now she is healthy!

So what is the point of sharing this?  During this very stressful time, I gained some clarity.  Already we have had people look at our lives and somehow pity us.  They see the stress, the doctors appointments, the sleepless lights and think we somehow regret bringing Jana home.  During this cancer scare I thought “Would you go back and change it?”  My answer was no.  I feel like God brought Jana to us.  He had a plan and purpose for her being in our lives.  And even if my time with her is cut short, even if the worst happens, having her is still worth it!  We would never even consider going back and telling our social worker no.  Jana has brought so much joy and happiness into our lives and honestly, we wouldn’t change anything about who she is or the experiences we’ve had.  summerspeical4

Life can change in an instant.  None of us are guaranteed another day.  I know as Jana gets older even more scary events will come our way.  This coming August we have to hand her over to a surgeon for her tonsillectomy/adnoid removal.  My point is, don’t judge a family by the struggles they are facing.  See past the pain and see the determination, the love and the faith that is getting them through it.

Guest Mama – Looking Back

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caleb7

I’d like to introduce you to Karen today.  Karen is a beautiful mama to a very handsome boy named Caleb.  I’ve been able to follow Caleb’s journey as he competes in the Special Olympics, travels to be part of DSA Programs, and overall as he just lives his life as a pre-teen boy 🙂  I love that I’ve been able to connect with Karen because she has been able to advise me when it comes to these rough toddler years Jana is going through.  Part of our DS community is learning from others and passing that knowledge down.  So I’m happy to give you the chance to meet Caleb 🙂

Looking back, and looking ahead….

caleb6Raising Caleb has been quite a journey so far. We were/are “older” parents to begin with, so…that. And he’s got a ton of energy, so….that! We didn’t exactly plan to have Caleb, 17 years after his sister, but I honestly believe he was sent to us for a reason. Those first days and weeks were filled with lots of emotion – joy, sadness, confusion, anger, concern, but most of all, love. We loved him from the first, but realized that raising him would be more difficult than raising a typical child. I say that not because we loved him any less. But because we know the world still has a long way to go to be an inclusive environment for our kids with disabilities –whatever they might be.

Those first days of his life would also be filled with doctor’s appointments, and therapy visits. We settled into our routine, and wondered if this would be our new normal forever (It isn’t). Later on, Caleb headed off to preschool, and mom-playgroups turned caleb4into playdates with friends. He happened to be one of two children with Down syndrome at our church preschool. Both of them were included in everything. We worked hard on developing communication skills to make that easier. Big-kid school came, and therapies were done in during the day, which made it a bit easier for mom.

Fast-forward to today. Some days, I have a hard time believing our little guy is already ten. 10 is a funny age. Halfway between toddlerhood and adulthood. Caleb’s on the cusp of puberty, and I have my fingers crossed that going through that with a boy will be a little easier than it was the first time J Jana asked me to share what our typical day looks like. It brought me back to a time when Caleb was little; being fascinated with the one lone mom who stayed in our BabyCenter Down Syndrome group. Her son was older, maybe even ten years old. What was their life like? Was it really #morealikethandifferent ?

caleb1For us, the answer is yes, and no. We still struggle with communication most days, and fine-motor skills. (Fingers crossed to work on shoe-tying and other independent skills over the summer). We work more on planning for his financial future than we did our daughter, making sure he had a Special Needs Trust, and now, an ABLE account. We have a binder with his medical life – specialists and insurance information – for easy access. We think about his future, and what that might look like – employment, government assistance, living situation, love life! We help him to understand the importance of good social skills as he gets older. We pray that he doesn’t have many encounters with bullies or overhear disparaging remarks.

caleb8However! Caleb leads a full and active life, filled with friends, sports, school, and community events (see my IG to see all he does!). We are thankful that even though he has a few health concerns (open VSD and hypothyroidism), overall, he’s a healthy kid who loves to do things and meet people. He loves to travel, and we’ve been some pretty cool places. He loves his family, most especially his niece Evelyn. He loves to help around the house, but could care less about showering (!). He likes movies and TV shows and books; trains and cars and nerf guns. We like to do things as a family, no matter how seemingly mundane. He loves his daddy – loves to do things with him.

If I had to pick just one word to caleb3describe Caleb, I think I would choose “Excited!” because he is! He’s shown us how to live life to the fullest, and what it means to enjoy every moment we can. He shows us what unconditional love looks like, and what true friendship is. 10 years into our journey…we’ve learned a lot. But there is still so much to learn from this little guy. So, my advice to you, looking back, is to learn all you can from your child with Down syndrome. Give them the tools they need to fly. Because the world IS changing. There are so many opportunities for our kids today. The world still has a long way to go to be totally inclusive, but I think we are heading in the right direction. Be ready for poss-ABILITIES!caleb2

Peace,

Karen