Special Needs – Part 3

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sunsineFirst of all, thank you for joining me on my first “series” blog project!  I might have to try this again….it helped me focus and plan out my thoughts a little more.  Something which my hubby is always trying to get me to do lol.

So for our last part…how you can help!  A lot of people feel like the only way to help are in big…life changing ways.  Because of this, often people feel like there is nothing they can do to help out a friend who is raising a special needs child.  But remember, when life seems hectic and out of hand, it’s the small things that make the most impact.

So here are a few ideas you can use when helping out a friend in the special needs community.

  1.  Provide a meal.  You have no idea how amazing it feels to receive a meal from a friend when life seems out of control.  When a family has a full day of appointments, therapies or hospital visits, coming home and planning dinner is the last thing they want to do.  Providing a meal takes one task off their plate and allows them a chance to relax a little.  Not someone who cooks?  That’s ok!  Fast food, pizza or even a gift card is perfect too!
  2. Drop off a coffee or soda.  I don’t drink coffee, but I have heard from other mamas in the DS community who microwave their morning coffee multiple times before they have a chance to sit and drink it.  I’ve poured myself a glass of soda and by the time I got a chance to drink, the ice has melted and its watered down.  Bringing a friend a nice beverage is the perfect way to show them that you were thinking about them and figured they needed a pick me up.
  3.  Put a sweet note in the mail.  Words of encouragement can take a bad day and make it bright again.  When we received Peanut’s ASD diagnosis, I fell into a funk. However, I was bombarded with words of encouragement from dear friends and it honestly pushed me out of my pity party.  With their support I felt rejuvenated, and that I would have the strength to deal with whatever comes our way.  Peanut is part of an online special needs group.  We mail each other out cards and goodies to brighten the families day.  Each sweet mail she gets warms my heart.  The fact that someone took time out of their day, wrote a sweet note (Who writes anymore!) and took the extra time to mail it out…that’s huge!!  I keep each card I receive and cherish them!  Even if you can’t mail something out, a text or email goes a long way!  Just something that can let a family know you are thinking about them.
  4. Purchase diapers, wipes or even baby food.  Now, this is something you probably can’t offer to do…you might just have to do it.  I know when people have offered us, I tell them not to worry about it.  When a newborn comes into the world, the family is showered with diapers and wipes, things that they will need constantly daily.  Many children with special needs wear diapers well into their elementary age.  Some even as adults.  Now, there are programs that do help with this need, however, they are very hard to get into and most of the time they add more stress and appointments to the family.  But these items get expensive and they are needed daily.  Purchasing a small amount to help a family would go a long way. Juan and I buy our boxes at Costco and at first, we were worried she would outgrow them but she has worn the same size for the last year.  So diapers always help.
  5. Baked goods always make someone smile 🙂  I LOVE pretty much every baked goodie known to man.  However, when I bake them myself, I usually don’t really eat them.  But when someone takes the time to bake me something, it tastes even better.  I have a friend who makes the BEST Spiced Sugar cookies,  (she won’t share the recipe so I have to ask her to make them lol) last summer she was leaving for a few months, so she baked a whole bunch for me to freeze.  That way I could have a sweet treat whenever I needed it.  Can’t bake?  That’s ok!  Even a package of Chips Ahoy can hit the spot!  No one can be upset when they eat a cookie or cupcake right?

I’m sure there are a ton of other things that you can think of.  From experience, we’ve had a few meals provided, been handed cash while shopping for diapers at Costco, we’ve received unexpected presents for Peanut.  And even something as huge as our family car…it was given to us when Peanut first entered our lives because we didn’t have a vehicle big enough for our whole family.  From big acts to small words of encouragement, each special gift someone has shared with us has touched our heart.  small-acts

So now I want to know your ideas!  What special things have you done for others?  Or better yet, what special acts have been done for you?  Please share them in the comments or message me.  I’d love to hear how your family has been blessed!!

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Special Needs – Part 2

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IMG_2307Ok…so we are on part 2 of my first ever series blog.  Monday I posted part one which talked about the stresses and worries of a special needs family.  (Read it here if you haven’t already)  Today let’s discuss babysitting.

Ok…so I’m not exaggerating when I say that everyone falls in love with Peanut!  Honestly, spend 5 minutes with this girl and you are hooked!!  Because of that, I can easily think of at least 8 different people who I could call instantly and they would be thrilled to babysit!  So why don’t we take all these willing, loving people up on the offer?
There’s a few different reason…

  1. As some of you might know, Peanut’s daddy is slightly protective of her. (Slightly as in considerably!)  So from the beginning, he has been SUPER particular in who we’ve left her with.  I can name 4 people in almost 3 years who have watched her.  And two of those are grandma’s and one is Jojo (her big brother!)  Because of this, I haven’t even pushed the possibility of new options.
  2. Let’s say we do go out…we get a sitter and they come over to the house to make it even easier on Peanut.  Let’s say we are finally ready to actually go out, kid-free, for a few hours!  We are thinking, wow this might work!   And then we get the text.  Peanut has been screaming non-stop and they have no idea how to help her.  Now, why would I even think this would happen?  Because it has!  Peanut is a creature of habit.  She eats the same breakfast each day, she naps around the same time, daddy does bedtime change and I sing her a song and put her in bed.  Same thing each night.  When things get switched up on her, she often has no way of dealing with it.  Usually, this freaks others out…freaks us out too sometimes!
  3. Ok, so the last reason, we do go out.  The babysitter stays with Peanut and things go great!  She seems happy, no meltdowns, all is happy and well in the home.  So we are gone a few hours and enjoy our time.  We get home, sitter leaves, and we go about our normal night time routine to get her in bed.  Cue meltdown!  It’s almost like Peanut just realizes that we were gone and her whole night was different than normal.  She will now be up and upset for about 2 – 3 hours.  When we finally do lay her in bed, she will cry constantly.  Making it a very long, loud and tiring night.  So much for a relaxing romantic date night.  Again, this is from experience!

So you can see, getting a babysitter to get some time away isn’t really always the best option for us.  I’m not going to lie, there have been times when none of these reasons have played out and yes, we did have a few nice hours alone.  But more times than not, one of these things play out.  The odds are not ever in our favor!  

So you can see how having a special needs child, changes simple date nights for many families.  Throw in children with oxygen needs, feeding tubes, wheelchairs, or are older and not potty trained, and it makes, even more, worries and stress.  You get to the point where just leaving your child with a good friend or trusted teen is not an option.  So…what are you suppose to do?  Yup, stay home and just never have moments away for just each other…..

NO!!  Of course, that’s not the answer.  The key is getting creative.

Something Juan and I have talked about, but haven’t looked into yet, is the option of finding a certified babysitter through special programs offered.  These caregivers are CPR certified and trained to specifically work with children with special needs.  You can find programs like this in your area.  Some are available for little or no fees.

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Another way Juan and I have been able to sneak away is with the help of Jojo.  He is 16 and very responsible and loving to her.  As long as I feed and change her, he is good with her for an hour or two.  We’ve used these times to go grab a coffee, go grocery shopping, or even meet up with friends.  I know not everyone has access to a Jojo, but you’d be surprised how many teens are responsible enough to help out when needed!

Lastly, don’t underestimate the fun of a late night stay date!  This is something Juan and I try to do when we have the energy to stay up late.  After the kiddos go to bed we watch a movie that doesn’t include porcupines singing or superheroes blowing up someone.  A few times we’ve done a very late night dinner, or just simply a glass of wine and dessert.  Anything to have a moment together that doesn’t include kids.     

Why is this important?  Because what kind of parents can we be to Peanut if we are not on the same team?  Marriage is tough!  It takes a lot of work and effort.  It is very easy to let it slip aside and focus on everyone else.  But one day the kids will move out or be even more independent.  Juan and I will be left with an empty home and just each other to focus on.  If we do not take the time now to work on us, we won’t make it without the distractions.

So to all the special needs families out there, please do not feel guilty when you just need a moment away from your babe.  If its to reconnect with your love or just a moment to yourself, do not feel guilty!  Your child needs you to be taken care of as much as they are.  Just like when you are in the pool, you can’t save someone else if you are drowning too!  Set time aside to recharge your batteries so that you can have the energy necessary be an even better parent than you already are!

 

Special Needs – Part 1

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IMG_2218I’m not a series kind of person. But I’ve had a few blog post ideas in my head and kinda feel like they all tie into each other. Today we’ll discuss the special needs family, Wednesday – Baby Sitting and lastly Friday – what you can do to help. I will try hard to not repeat myself through this 3 part post…so please bear with me.

My hubby Juan and I have been married almost 17 years. We started out young, and due to that, we have faced a lot of challenges and obstacles. At one point we did have a short separation, but we found our way back together and have been stronger since. We thought we had handled all the different stresses imaginable…until Peanut came into our lives. Let me explain!

img_1193.jpgPeanut has brought so much joy and happiness to our family. On a daily basis, we have so much fun playing and snuggling with her. As a whole, she really did complete our family.

However, along with her being special needs, this has also brought countless doctors appointments and therapy sessions. It’s taken us away from the big kids days at a time. It’s taken a hit in our finances (Having to travel 2 hours away for each doctor apt.) as well as purchasing special toys or items helpful for her therapy. At times we joke because it’s usually just Juan and I with Peanut and we say she probably looks at her siblings as her cousins. It’s a joke…but it’s also sad. We hate having to be apart so often or feeling like the big kids are being left out. But we have amazing kids and so far they have been totally understanding when it comes to our travels. Especially since this summer they went along with us for appointments and realized how boring our trips really are 🙂

Because of all of this, it has put a lot of stress and strain on our marriage. By the time we have a chance to spend any time together, we are exhausted and irritable. With Peanuts lack of sleep, we are often going on around 4 hours of sleep per night. We haven’t gone on an actual date (kid-free dinner, not grocery shopping, or dropping off kids) in about 5 months, and haven’t had a night alone in almost a year! We are worried about her health, her progress, and ensuring she is receiving all the care and services she needs. Top all that off with 3 older kids who are active in school, Juan’s job as a youth minister, my photography work, family, and church, we are pretty much tapped out. Our marriage has basically taken the back seat to everything and everyone else.

With only the help of God, we are still holding on strong. But it’s definitely not how we would hope our marriage to be.

So what is my point for sharing this? Not for your pity or sympathy, but to help you understand what goes on in Special Need families. I’ve known other families who have children with special needs. Prior to Peanut, I could never even imagine the daily struggles and stresses they face. They always seemed to have it put together and happy. And you know what, they probably were. We try to not pretend we are ok…but we do all of this because we love Peanut! It’s the things you do to make your children’s lives a little better. The stress, the fears, the sleepless nights, are done all out of love. Do we wish we had the time and more energy to put towards our marriage, of course! But we are praying that this sacrifice now will all be worth it in the long run.158a312a31311f961b1c440b7c8266be--cerebral-palsy-quotes-down-syndrome-quotes

I don’t feel that this is something only our family is going through. I’ve spoken to other mamas and I can hear their exhaustion. Some families are separated for months at a time. Their sweet babes have been admitted to the hospital countless times, they are facing life-threatening surgeries and working so hard each day to help them grow. Often times Juan and I feel so blessed that Peanut has not struggled as much as other kiddos her age. So many families are struggling just to keep their lives together. And I know from experience, they often feel alone and secluded from loved ones around them.

Because of this separation, Juan and I have seen a great need in our area for the special needs community. Currently, Juan is setting up a plan for us to start a Podcast for families just like us. We are hoping this will help families like us share our stories and experiences and educate each other. I recently got to work with some other local mamas and we are in the process of establishing our own Down Syndrome Network. Our church will be hosting a Night to Shine this February for all individuals with cognitive or physical disabilities over the age of 14 in our county.  Even this blog has opened us up to other families that we would have not been able to connect with otherwise. All these things are just small opportunities to connect families together who often feel exhausted and alone.

 

Weighted Blanket

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IMG_2152Last week a light bulb came on in my head.  After yet another meltdown, I realized the one thing we hadn’t tried yet with Peanut was a weighted blanket.  Knowing these can run from $150-$300, I knew it wouldn’t really be in our budget to purchase right away.  So I looked to our Instagram friends for help.  I asked for recommendations, but each one still seemed way out of our already tight budget.  I wasn’t thinking it would be something that we would be able to do right away.  Until I got a DM.  One of my followers spoke to her neighbor and sent her my way.  She informed me that they tried the weighted blanket with her son a few years back.  Unfortunately, it didn’t work with his sensory issues, but she held onto it hoping one day she could pass it on to someone who needed it.  I was so thrilled and offered to pay for it, but she said no. She told me to just pay it forward and help another mama out one day.  I honestly was almost in tears!  Here was this stranger willing to help my baby girl in more ways did she know!!  I am honestly floored by how much love that has come Peanut’s way.

So what is a weighted blanket?

The science behind weighted blankets is called deep touch pressure, or DTP for short. DTP is the term for gentle weight distributed across your body. You can get the benefits of DTP from things like massages or hugs.

Deep Touch Pressure has been shown to reduce activity in the nervous system, which helps give a feeling of calm.

It’s also beneficial because a few studies show that DTP can increase serotonin levels in the blood. Serotonin is important for mood regulation, brain development, sleep, appetite, aggression, and sensory processing.

These two benefits combined make weighted blankets a great option as a drug-free way to calm down. Whether that is before bed or after a stimulating activity, weighted blankets can help alleviate anxiety and bring a sense of calm.

Basically, its like being wrapped in a tight warm hug!  It helps children focus on just one thing, the blanket, and allow all other senses a chance to calm down.  It helps tremendously with children with Autism and ADHD.

I wasn’t sure if Peanut would like it or not.  But I felt like we just had to try.  When it first arrived, I draped it on her…she laughed and moved away.  She didn’t dislike it but I didn’t see it changing her mood.  I’ve been trying off an on just to get her used to it.  It wasn’t until last night that we finally saw the benefits.

IMG_2144It was getting late, and Peanut’s mood was starting to shift.  We had been playing with the blanket with the big kids…(Jojo LOVES it btw) so when Peanut came to sit between Juan and I, we slipped the blanket over her.  Almost instantly we felt her body relax!  She snuggled with us for about 20 min (which is unheard of normally!!)  When she realized she was getting tired, she instantly pushed the blanket off and climbed all over us lol.  But it was nice to see her senses calm a little.  I put it on her again while she was sitting alone and almost instantly she relaxed.  I was so excited to see that the blanket worked!  I’m hoping this will give her some focus when she if feeling overwhelmed or having a sensory overload.

Once the weather starts cooling off outside, I plan on taking it with us out, to help when we are in noisy areas.  Again, I am so grateful to this amazing woman who reached out to a stranger.  Her kindness will always be remembered and I will definitely be paying it forward!

 

Product Review – TwistShake

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Hi friends!  It’s a new day and we have already taken steps to get services to help Peanut with this new diagnosis.  We are being proactive about it and hope to starting new techniques to add to her therapy. Today is a good day 🙂

It’s been a while since I posted a Product Review.  There are definitely some amazing tools we’ve been using with Peanut and I hope to review them soon.  But today I wanted to start with a non-special needs geared item.  19-5979cf5a4ed2e

Let me introduce you to TwistShake  It is a company from Sweden that just recently starting distributing here in the US.  They produce bottles, sippy cups, kid cups and pacifiers that are all BPA-Free.  They are not only safe and effective, they are adorable as well!!  So much so I am hoping they develop an adult cup because I love it so much!!

Peanut was given a sippy cup to try out.  I was so excited about this because we have struggled getting Peanut to use a cup.  She has mastered straws but has had a lot of difficulties with cups.  She struggles lifting them correctly as well as closing her mouth enough to get anything out of them.  It is something we continue to work on.     IMG_1912

I was thrilled that she was actually excited to try the TwistShake.  I filled it with frozen mixed fruit because it is still pretty hot outside.  I gave it a good shake and helped her get a good first drink.  She loved the taste of the sweet water because I really don’t allow her any juice.  She kept handing the cup back to me so I could help her drink it more.  She has started making progress on holding it correctly and doing better about closing her mouth around the spout.

What makes these cups so special?  It has a Fruit Mixer that allows you to infuse your water with berries or fruit safely without worries of seeds or chunks.    From their website:

Fruit Mixer – mix your favorite fruits or berries and water, shake, and wonder at the fantastic flavors that have infused your drink. Healthy and delicious!

Also for letting us try it out, they gave me a Coupon Code to share with you!!  If you love the bright neon colors (like the one Peanut has) use code RAISINGPEANUT40 to save 40% off.  They also just restocked these adorable pastel colors!!  We already ordered the Mint Green and can’t wait to receive it!!  Use code RAISINGPEANUT20 to save 20% on any item pastel collection.  Also, free shipping on any orders over $25!  SCORE!!  Remember, these are not just for sippy cups, these codes work on bottles, kids cup and pacifiers.  Peanut has put her stamp of approval on TwistShake!  So go order yours!!

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Our new Journey

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Peanut had her Autism evaluation today.IMG_1995

Let me first start by saying, currently I am feeling numb and crushed.  This has been a very emotional day for us…I think maybe me more so.  The test was conclusive that Jana’s current assessment scores are reflective of her having moderate to severe Autism (In CA they are not able to legally diagnose until the age of 3.)  So what does a dual diagnosis mean?  It means even more changes.  She will now need to add ABA (Applied Behavior Analysis) to her therapy schedule.  She has a chance of being non-verbal and/or limited communication.  It can further delay or impair her mobility and walking, her fine and gross motor skills and her overall development.  With this dual diagnosis, the chance of her attending a mainstream school is now in question.  She will most likely never be able to live on her own, she will probably never create a deep relationship with someone to marry, and I have no idea what her developmental goals will be now.

IMG_2002Listening to the doctor list off where Jana fits developmentally in different areas felt like she was stabbing me in the heart.  To hear my precious 27 months old has an overall age development of a 5-10-month-old was devastating!  I knew she was delayed…obviously, but not that much!  It took every bit of energy I had to hold it together while she listed off Peanuts delays.  With each new test result, I saw more and more dreams I had for her vanishing away.

I am part of a FB Down Syndrome/Autism support group.  I went to them almost immediately for help.  I felt broken and alone.  The amazing family I’ve found in our Down Syndrome community suddenly felt so disconnected to us.  She will no longer be experiencing what most of those kiddos experience.  As they continue to develop and grow…she will stay the same.  She has never “fit” with typical kids, now I feel she doesn’t fit with kids with DS either.  A mother responded to me and it touched exactly what I was feeling…

I think we all feel that way when getting that second diagnosis. It is like getting the wind knocked out of you, again. Just like when I heard that my son had Down Syndrome although the second diagnosis it was a shorter time to get through the feelings of “loss”! I tell people when you hear your child has Down Syndrome, you go through a time of mourning the loss of a typical child. When you get the Autism diagnosis I mourned the loss of a typical child with Down Syndrome. It’s like before your child is born you dream about who they will become and what they will do and then, bam, Down Syndrome. Then you think, look at all of these young adults with Down Syndrome doing amazing things, then BAM, that second diagnosis! Now what do you dream? One day at a time, sister. Create my own dreams each day. My son is 15 and even though he’s non verbal, he touches everyone’s heart that has the opportunity to know him and changes people’s lives for good. I know that sounds strange, but people tell me that all the time. Keep up the good work.

Right now I feel stuck.  Right now, I no longer know how to IMG_2014dream for Peanut.  I feel like we are starting from day one again.  New obstacles she will face, new setbacks, new fears we must now conquer.  Just thinking about how much harder life will be for my sweet girl now brings me to tears.  She had to work hard with “just a DS” diagnosis.  Now she has to work even twice as hard…to still be drastically behind her typical and DS friends.  This really sucks!  There is no other way to put it.  I don’t want this diagnosis.  I do not want to fight with our Regional Center to add ABA.  I don’t want to add yet another specialist we need to see on our already busy calendar.  But we will do it!  I told myself I am allowing this weekend to be sad and have a small pity party…but when Monday comes along, it’s back to business.  I will do everything imaginable to help my daughter be the very best she can be.  If that means she will only reach a 3, 5, or 10-year old developmental stage, then I will always cherish my forever baby.  I will support her, love her and cheer her on along the way as she makes her own dreams.  She will still be a world changer…you can bet on that!

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

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