The Common Cold

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Let me introduce you to this little beauty, Jordan Grace.  Jordan’s mama and I are IG friends and have become close recently.  Our older girls are even PenPals now 🙂  As you can see, Jordan Grace is not only gorgeous, but she also has Down Syndrome.

A few weeks back Jordan’s mama, Maria, shared this photo of Jordan.  She had to rush her sweet girl to the ER because just like Peanut, a simple cold for Jordan can become horrible.  As I’ve mentioned before, children with Down Syndrome have a very narrow airway in their nose.  Because of this, any congestion can really affect their oxygen level as overall health.  Peanut has had two hospital admissions due to this.  IMG_3452

In the caption of the photo, Maria expressed her frustration about sending children to school who were sick.  She was obviously devasted that her sweet girl needed a trip to the ER because of a simple cold.  As a parent, it is so frustrating to do everything you can to keep your child healthy, only to have another parent send their sick child to school and spread the sickness.  Especially when your child doesn’t always have the capability to fight the infection.

Well, somehow Yahoo! found this post and did an article about it.  Apparently, starting a huge debate about children going to school sick.  They only gave a partial explanation and made sweet Jordan Grace out to seem like this fragile child who needs to be in a bubble.  Let me tell you, Jordan Grace is FAR from fragile!  This girl is strong, independent and overall healthy!  Poor Maria has been bombarded (not only on Yahoo! but on her IG account as well) from people attacking her.  Saying things like it is not their responsibility to protect her child, to what kind of mother sends a kid whos that weak to school.  At the time of writing this, there are currently 1,163 comments on Yahoo! almost all negative towards Maria.  I honestly had to stop reading them because I was getting more and more angry.  She even blocked her IG feed to stop the negativity coming directly to her.

Let me explain to you what happens when Peanut is admitted.  First, they start with a Deep Suction to remove the built-up congestion in her throat.

Deep suctioning means going past the posterior pharynx with a catheter, through the vocal cords, down into the patient’s airway (trachea!), and applying suction, to remove thick secretions that are making it hard for your patient to breathe.

In layman’s terms, they stick a long skinny tube down our daughter’s nose into her throat and suction all the build-up out.

Image-1This process is done multiple times throughout the stay until Peanut is able to clear the congestion herself or with the help from Daddy and the NoseFrida.  If you have never experienced your child going through this, count your blessings!  It’s absolutely horrible and heartbreaking!  Google it if you are curious.

Most of the time an IV is needed to provide fluids and medication.  By this point, she is usually dehydrated some and they often struggle to find a vein strong enough for the IV.  One time it took 5 different tries before they were successful.  That’s right, 5 times they poked her with a needle only to try again.  If her Oxygen level is below 93 they also use a nasal cannula taped to her face to administer oxygen.  She is hooked up to not only blood pressure and O2 monitors, but heart monitors as well to watch her heart beat.  The last hospital stay we were admitted 4 days, 5 the time before.  They are unable to release her until her oxygen level stays above 95 while she is sleeping for over 8 hours.

I’m not sure what care Jordan Grace received this time, but I wouldn’t doubt it was similar to what Peanut goes through.  It is not as simple as taking your child to be seen by their pediatrician and given some medication.  In our case, it also includes a 2-hour car ride to the children’s hospital.

This is why something like a simple cold can be devastating to a family who has a child who struggles to fight it on their own.  Does this mean I expect you to make sure my child stays healthy?  No, not at all.  All we are asking it that you take a moment and try to put yourself in our shoes.   Please try not to send your sick child to school and spread it over to the other children.  Have some courtesy when you drop them off at daycare, the church nursery or yes, at school.  Even simply informing the caregiver that your child is ill will help.  At least then maybe they can try to keep an eye on your kiddo and try to isolate them a little from the other kids.

This isn’t something that only the Down Syndrome community deals with.  Lots of children have immunity issues and can not fight simple colds as well as typical children.  By the way, a comment compared this to children with nut allergies.  He mentioned that it wasn’t his responsibility to make sure the kid with a nut allergy is fine, maybe they just shouldn’t be in school.  Peanut’s big sister Jaylen is like the other 5.9 million children with food allergies in the US.  If she even touches a Walnut she will break out in hives, have an asthma attack and go into anaphylactic shock.  Eating it will result in full anaphylactic shock within seconds (its happened before) and she could die if not treated immediately.  So no, it isn’t his responsibility to make sure my child with a nut allergy is safe, but I would hope as a fellow parent he wouldn’t want to harm a child when it can easily be avoided.

Can I just address another thing, let’s stop bashing other parents!!  I’ve been in Maria’s shoes.  Having total strangers attack you as a parent is devastating.  No matter how much you ignore them, it hurts.  Maria did not ask for this article to be posted or for her IG account to be posted for millions to see.  She didn’t ask the thousands of strangers to judge her as a parent and express their opinions about her daughter.  The web has made us all mean, cruel and stupidly brave.  You would never attack another mother to her face, just because you are sitting behind a computer screen doesn’t make it any better!!!  If you can’t say anything nice then just SHUT UP and keep your opinions to yourself.  Trust me, we all feel like we are failing as a parent without you pointing it out to us!

Yahoo! Article: Mom’s plea for parents to stop bringing sick kids to school sparks heated online debate

 

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Eary Signs

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A lot of people have asked how we came to the realization to have Peanut evaluated for Autism.  Because so many symptoms overlap between Down Syndrome and Autism it can be scary and difficult for parents to tell the difference.

It’s important to notice the early signs and speak to your doctor about them.  We got very lucky because her Pediatrician is a developmental specialist and works with children with special needs.  He was able to point out things we hadn’t really noticed and encouraged us to have her evaluated fully.

One major flag we noticed was how often Peanut will sit and play repetitively with random objects.  Her favorite is clothing.  She will sit and “sort” clothing (any cloth material really) for hours and hours if we allow her to.  Something that we thought was adorable, became a huge red flag.

Yesterday I was able to record her doing this repetitive play.  You’ll see she focused constantly on putting her ring toys into a small teacup.  There is no reasoning, there is no joy, there is just repetitiveness.  At the time of my recording, she had already been doing this for about 30 minutes.  She continued for about 30 more.  I try to engage with her, ask to have a ring or even put the ring in the cup myself.  But nothing breaks her from this trancelike play.  She ignores me, maybe looking my way a little, but for the most part is content with this action.

So what is the issue with this?  If you check out this article Learning to treat repetitive behaviors in autism

Intense interests often interfere with a child’s ability to socialize, because other children cannot relate to them, leading to further isolation.

If we allow Peanut to continue in the repetitive play, she can become so focused on it, and miss out on other opportunities.

hugShe alsoimg_3310 has the tendency of bringing her hands up to her face when she is anxious or stressed.  Someone pointed out that it looked like the hug emoji.  It seems like a cute, sweet way to describe what she is doing, but we’ve learned that this means she is starting to feel overwhelmed or tense.  It’s these non-verbal cues that have helped us prevent Peanut from having full meltdowns when she is struggling with the environment around her.

During infancy or toddler years you may see:

  • Repetitive motor behaviors (fingers in mouth, hand flapping)
  • Fascination with and staring at lights, ceiling fans or fingers
  • Extreme food refusal
  • Receptive language problems (poor understanding and use of gestures) possibly giving the appearance that the child does not hear
  • Spoken language may be highly repetitive or absent

(source: Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know)

Peanut often puts her face as close to the lights on her toys as she can get.  She focuses on the flashing lights and colors.  She can go one day to the next and refuse to eat the same food.  It’s not even a taste issues.  It’s purely a dislike for the food in general.  This even happens sometimes with her all-time favorite food, french fries.  It is very difficult to get her to turn our direction when we call her name.  She also does not wave hi or bye, blow kisses or point to things she wants.  Lastly, when it comes to language, she is almost fully non-verabal.  The few words she used to say pretty often have regressed and she is now down to Mom, Dad, No and “I done.”

As you can see, the signs for Peanut having Autism have been there from the beginning.  Often times, even typical children will fall into these red flags randomly.  But if you feel like your child shows multiple signs, pretty consistently, you might want to speak with a specialist about further testing.

It is very difficult to come to terms with the fact that our children might have more obstacles to overcome.  I had an extremely hard time when we received our Autism diagnosis.  But our job as parents is to help our children become the best the can be.  Sometimes that means, accepting things we do not want to hear, and relying on a specialist to help guide and direct us when things are wrong.

We’ve heard comments like “Isn’t she already receiving therapy?  So whats the point of the second diagnosis?”  Well, the point is huge!  She does receive plenty of therapy for Down Syndrome, now she will gain therapy that focuses fully on Autism.  ABA (Applied Behavior Analysis) is a very intense, daily therapy that will help her function in day to day life.  This will focus on all aspects of her day from eating, playing, learning and handling stressful situations.  Without this specialized therapy, her progress can delay even more.

The most difficult part (apart from acceptance) is research.  Currently, there is very little information on Down Syndrome ASD dual diagnosis.  Because of the overlap and common traits, it is still difficult to determine a cause.  Even recently we were approached to participate in an early Autism diagnosis research program, only to be told her Down Syndrome status automatically disqualified her.  So currently my job has been to not only continue educating myself in Down Syndrome but also in the Autism Spectrum Disorder as well.  By doing this, I can hopefully understand the best way to help Peanut grow and develop.

To the parents of a possible duel diagnosis child, please do not get discouraged.  It is scary, it is overwhelming, and yes, it is heartbreaking.  But as I’ve said before, you are not alone!!  There are support groups for this situation and other families who can help guide you through it.  Hang in there!!

FB Support Group: Down Syndrome-Autism Connection Support

Down Syndrome-Autism Connection

Happy Halloween!

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Today is Halloween and the last day of our favorite month! This morning Peanut will be attending a Harvest Festival at her school.  This is always fun because we get a chance to interact and play with other children with special needs.  Then tonight it’s off trick or treating!

This past weekend we participated in our local Buddy Walk.  We had 45 members of Peanuts Buddies walking with us and quite a bit more supporting us in spirit.  She even made our local newspaper and TV news!

Check out the news feed here: http://www.kyma.com/news/parents-of-kids-with-special-needs-face-special-challenges/647324756

Our little star totally has a way of captivating anyone who meets her!!

November brings a few more doctors appointments and a busy schedule…but for now we want to wish you a safe and fun Halloween!  Peanut has never really had much candy so tonight she might be in for a surprise 🙂

 

 

21 Non-Down Syndrome Facts about Peanut

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It is still October which means it is still Down Syndrome Awareness month!  This

Saturday we will participate in our 3rd Buddy Walk as part of Team Jana.  In our area, this event is pretty small, but I love that so many of our friends and family come out to show their support for our girl!  It’s something we look forward to doing all year.

But today I wanted to do something a little different.  Even though Down Syndrome is so much a part of Peanut’s life, she is so much more than a diagnosis.  So today I wanted to help you learn a little more about our amazing girl.  So you can see truly why she is just so amazing!

21 Non-Down Syndrome Facts About Peanut

  1. Her favorite snack right now is Mini Nilla Wafers
  2. Her favorite tv show is on Netflix, called KAZOOPS.  If you haven’t seen it check it out.  It has a little Beatles Yellow Submarine feel to it.
  3. She LOVES books!  She can sit and flip through them all day.  Her favorite are the ones that have a touch element and she always makes sure to feel each page.
  4. She only plays catch with her Daddy and big sister.  She’ll toss it my way every once in a while, but with those two, they can sit for hours playing with the ball together.
  5. Which brings us to…..SHE IS A DADDY’S GIRL!  From day one this girl had Daddy wrapped around her finger.  I get picked first every once in a while, but I think that’s just to make me feel better 🙂
  6. Peanut is a people watcher!  She loves to sit back and observe what is going on around her.
  7. Sitting outside is something we try to do every day.  She loves crumbling up leaves and just watching cars go by.

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  8. She will watch The Secret Life of Pets, Home or Hotel Transylvania 2 every day if we let her.
  9. Peanut loves pasta!  This is somewhat of a new food she now will eat but she is definitely a fan.
  10. We have a peanut-butter and honey sandwich every day
  11. Bath time is the best part of the day
  12. Although she is very loving, she is very particular to who she will allow to hold her.  She definitely has to feel safe and trusted before she will allow someone to interact with her closely.
  13. She has a thing about putting her hand down peoples shirts.  We think its a touch sensitivity when she is tired.  Almost like how newborns like to have the skin on skin contact.
  14. She loves her animals.  We have 2 dogs and 2 cats, I think the cats are her favorite.
  15. Every night before bed, she has to play on mama and daddy’s bed for about 20 min.  We both have to be there and she gets upset if one of us gets up.  I think she enjoys the full attention we both can give her at this time.
  16. She has somehow learned how to open my phone and likes to look at herself on the camera
  17. Mirrors!!  Though she is not vain, you might catch her giving herself lots of kisses if she has time in front of a mirror 🙂
  18. She is becoming a daredevil.  She loves to somersault, be thrown in the air, climb things and even hang upside down.  Though, heights do seem to worry her a little.
  19. Taking after her big sister, Peanut loves music!  She will sit and play on her piano and then look up at everyone to make sure they are applauding her masterpiece.
  20. She seems pretty seriously mostly but loves making others laugh.  Also, she makes others work for her giggles but mama knows the secret spots.
  21. Peanut is loving, intelligent, strong-willed, determined, playful, thoughtful, funny, adventurous, charming and beautiful inside and out. IMG_2969

When Reality Smacks You in the Face

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IMG_2983The past few weeks we’ve felt like Peanut has been making a lot of progress.  We’ve seen some of her vocabulary return.  (Now saying Mom, Dad, No, I Done and signing mine)  She’s been making a lot of strives in her walking.  Standing almost constantly on her own and even trying to take steps fully unassisted.  It’s been so easy to see her accomplishments these past few weeks!!  It would be impossible for me to explain to you how proud I am of her.

Then today happened.  She will soon be starting school once a week for four hours.  This will take the place of her twice a week in-home therapy.  Because of this, her worker wanted to see how she would be in a school like setting while other kids are around.  So we had her therapy session in the classroom with 4 other little ones doing their own thing.  Jana wasn’t expected to participate with them, they wanted to see how she would do with the distractions and noise.  Now, I am very happy to say that the distractions didn’t bother her that much.  She was still able to listen to the story time, interact with her therapist well and even participated in a music time with the other kids.  That was wonderful to see.  She seemed to be fully unfazed by the situation.  Until you stopped to look closer.  I noticed almost instantly how antsy she was becoming.  She struggled sitting still and was easily frustrated when things weren’t going the way she wanted.  Because her vocabulary is so limited, when she is upset, she grunts and even throws things to show her agitation.  I watched my little girl get so frustrated and upset at her therapist because she couldn’t express herself correctly.  I watched her cry out, see the frustration in her face, become highly irritable because too much was going on around her.  As her therapist made Jana complete the activity and put toys away (all the while Jana was fighting back) I wanted so bad to just grab her and say that is enough.  So much of me just wanted to take her away and not make her work so hard for the simplest tasks.

To say it was not a very successful therapy session would be an understatement.  When we got into the car I almost broke down in tears.  When I looked back at my sweet girl and she was still so agitated, pulling at her shoe, grunting at me, my heart broke.  I can’t imagine how difficult it must be for her to not be able to communicate with us.  To not be able to tell us that she doesn’t like something or just wants to go home.  How scary it must be inside her little mind to feel like no one understands her.  To want to give up so badly but have the adults around her pushing and pushing for more.

Part of me wants to protect her from all of this.  To cancel all therapies and just let her be the happy go lucky girl she can be.  No longer pushing her almost constantly to reach new goals and new skills.  I know that if I were to do that, she would be very delayed later in the future.  It would hold her back so much.  But you know what, part of me is ok with that!  I would love and support her no matter what she could do.  I would keep her in this little protective bubble and love her just as she is.  But that’s not fair to her either.  My job is to help her be her very best.  I don’t have a clue how I am going to be able to handle the intense ABA therapy she will one day start.

There is no easy answer.  This is what Down Syndrome and Autism do.  It makes the world a lot scarier place for our little ones.  It makes every task a little harder and every achievement so much sweeter.  I hate looking into my babies eyes when she’s looking at me like “Mama please don’t make me do this.”  I hate turning away when she screams during therapy.  I hate how sometimes she is so frustrated with the work, she gets upset at me for making her be there.

IMG_2965For every goal she reaches, there will be 5 more put in that place.  Every new ability, skill or goal will be worked on and pushed for weeks before we see progress.  Every time I feel like maybe she gaining leverage.  Maybe she just isn’t that far behind in her peers, reality smacks me in the face and I see how much more she has to work towards.  I hate that!  I hate that she works SO HARD….so hard…and yet she is still 10 steps behind from everyone else.  I am so proud of who she is, the fighter that is inside of her.  But man…..oh man…do I wish I could just make it easier on her.

Sorry for the rambling.  Remember, this blog is more for me than anyone else.  Thank you for letting me get this all out and cry a little.  Peanut is napping, and once she wakes up I will continue with pushing her to do a little more.  I know one day all this pain will be worth it!  I might be her toughest coach, but I promise I’m also her biggest cheerleader!

 

 

Schooling

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Currently, Peanut attends Physical Therapy once a week for 30 minutes, in-home therapy twice a week for 1 hour and soon will be adding Speech and OT every other week.  (These are the two therapy’s that are 2 hours away…but that’s another postThis has been our schedule basically non-stop since she was just 4 months old.  But coming in the next few months…it all will change.

Technically her PT stops at age 3 (May 18′).  That’s how our local regional center has in place.  Our therapist has insisted that she will do everything to make sure Peanut’s therapy continues if she is not walking consistently on her own.  She tells us that her job doesn’t end until Peanut is independent.

Now, next month she turns 2 1/2 years old. Based on our regional center standards, this means her twice a week in-home therapy ends and she starts pre-school once a week for 4 hours.  For most children, I think this is probably a perfect transition.  For Peanut, I just don’t think she’s ready.

Let me explain why.  I’m not being that typical overprotective mother.  Peanut has no issues at all being away from me so I’m not expecting major issues there.  Also, with the added travel and new therapies, I could use a small break.  However, she is currently not walking independently and is non-verbal.  How in the world will she thrive in a school setting??  How will she ask for what she needs?

This is my main concern: When you leave Peanut alone, for the most part, she will beIMG_1348 perfectly fine and entertain herself.  I’ve seen it happen.  While she’s in our church nursery, or even home with a sitter, if you give her space she will be content and have no issues.  The reason for this…her autism diagnosis.  Peanut will not voluntarily engage with someone.  Not even with us really.  She needs to be pushed to interact and get out of her bubble.  Because of this, if the adults in the area are busy with children who are crying or other things, they can easily see her as happy.  Our worry is that she will be forgotten in the hustle of 10 other children with special needs.  Because she seems so happy, will they even notice her?  We have the option to say no to the pre-school and continue with in-home therapy.  But no matter what, when she turns 3, that service ends.

This has been my stress for the past few weeks.  I’ve done a lot of research about homeschooling children with special needs.  Unfortunately, I still feel lost and unsure of where to even start.  There are positive and negatives to keeping her home and sending her off to school!  We do not live in an area where there is a good reputation for schooling for children with special needs.  There are a few amazing special education teachers, but most that I know are for older students and we would still be fighting the school for services.  At the same time, I don’t want my fears to hold her back from the chance to thrive in a school setting. IMG_2481

So what is the answer?  No, really, what is it??  I’m at a loss right now!  So much of Peanut’s progress relies on us.  If we make the wrong decisions it can affect her tremendously.  This is what sucks about being a special needs parent!  The pressure of not failing is tough!!  Often times I catch myself throughout the day just praying “Please help me be the mom she deserves!

Please, please, please….any advice you can give me would be appreciated.  Do you know anything about homeschooling?  Have you dealt with difficult school systems?  Does your child just not fit the typical “standards” for special education?  Any words of guidance will be helpful!!

Jana’s story

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IMG_2658We’ve recently gained quite a bit of followers.  Because of that, I wanted to take a moment to share once again a little about Jana’s (Peanut) story.  Also, with it being Down Syndrome Awareness Month, it seems pretty appropriate.

Almost 4 years ago I started having an overwhelming desire to parent another child.  Juan and I were already proud parents of 3 amazing kids (Joey, Mason & Jaylen) and didn’t have any plans to have more.  But for whatever reason, I couldn’t shake the feeling of having another.  Month after month I would fall into a deep depression when my cycle arrived.  I would beg God to just take this desire away from me.  It was destroying not only me but our marriage as well.  My poor husband had no idea how to help me through this, or why I was even so set on another child.

Soon my heart changed…I convinced Juan that we should become foster parents.  That maybe we were just being called to love a child even for a short time while their family got their life on track.  Truthfully, he was hesitant about this with good reasoning.  He was just so worried I would not be able to understand that it would be all about reunification.  But, he knew how much our community was in need of foster parents, so we went ahead and went through the process of becoming certified.  I was so excited to finally welcome a young child to care for.  I felt like finally, this desire was making sense.

So we waited…and waited…and waited.  In a community where foster parents are turning away children because they are too full, we still had not received one call.  To say I was stressed out was an understatement!!  Why were we not being called?  Why are we still waiting?  I soon started having a recurring dream.  I was holding a baby girl that I knew was mine, but I didn’t give birth to her.  I never saw her face, I just knew she was ours.  This added to my anxiety and stress.  Again, we had no idea why all this kept happening and were desperate for relief.

Then on June 22, 2015, our social worker finally called me.  I remember the conversation almost fully.  She said they had a young baby in their system.  She was roughly 3 months old (later finding out she was only 1 month) and needed a forever home.  This wasn’t a typical foster placement.  They needed to find an adopted family because this little girl had Down Syndrome and needed stability.  She informed me that they were struggling to find someone who would look past the diagnosis and take her in.  She was hoping we would be that family.  She had me call Juan right away and see what he thought.  I held my breath after I told him the situation, praying he would feel the same way.  Almost instantly he said “YES!  We’ll take her!”  I called our worker back and after 2 days, we finally met our baby girl!IMG_2644

After countless hours of researching Down Syndrome, I had prepared myself for the worst.  I am ashamed to say that I was expecting a child who would be deformed and ugly.  How horribly wrong was I!!  She came to us bundled up in her car seat, a tiny little thing only weighing about 6 lbs. (hence the name Peanut)  I asked our worker if I was allowed to hold her, she replied “Of course!  She’s yours!”  When I held her, I didn’t see diagnoses.  I saw the perfect little angel.  She had the most beautiful almond shaped brown eyes, sweet button nose, and perfect color skin.  Honestly, I saw her big sister in her almost instantly.  When my husband held her, I swear I saw magic happen.  Those two bonded instantly!  She was immediately Daddy’s little girl.

I didn’t instantly feel connected to her.  Part of me was terrified they would take her away.  But that first night will stay with me forever.  We had just fed her at 3 am and she laid asleep on my chest.  I turned to Juan and told him, this was it!  This was the dream I had been having all those months before.  God had been preparing my heart for this special moment.  She was always supposed to be ours…we just had to wait!

IMG_2585It has been almost 2 years since Jana’s adoption finalized.  I am still amazed at how she came to be with us.  I am still in awe at her beauty and love.  I am still forever grateful to the workers who gave us our baby.  Peanut is special!  This girl has a way of making everyone she meets fall in love with her!  She captivates hearts and brings so much joy to those around her.  She is strong, independent, strong-willed and loving.  She has brought so much happiness to our family.  We’ve had people ask if we understood what we were getting into.  As if she would break our family apart because of the diagnosis.  They can’t see the love that our older kids have for her.  The laughter that is heard in our household on a daily basis.  The patience and kindness she has taught each of us.  Down Syndrome does not define Jana.  She is so much more than that!  She amazes us daily and we are so honored that she picked us to be her forever family.

It hasn’t been easy.  A lot of stress, pain, and worry comes from Down Syndrome.  We’ve had countless doctors appointments, nonstop sleepless nights, surgery, and hospital admissions.  But let me tell you, this girl is worth it!!  She has completed our family.  She was our missing piece that we didn’t realize was gone.  Down Syndrome did not break us apart, if anything, Down Syndrome was the one thing our family was missing.

Daddy Post – STOP BRAGGING & START ADVOCATING

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IMG_2351Every time parents get together to talk about their kids an all too familiar battle begins to take place. My child is better than your child because… My daughter started to walk at 10 months old. Well, my daughter can say complete sentences and she’s only 11 months old. Then you have the one golden child in the group; my daughter just built a life-size replica of Noah’s Ark in our backyard. Ok So I exaggerated a little bit but you get my point right, we all love to brag about our children’s accomplishments.

This past week Jana had another assessment appointment. This time it was to assess her for Speech Therapy. I will be honest, I am really starting to hate these assessments. They are hard to handle at times. The last assessment was at the Autism Center and it was really hard to not break down when we received the results. Nobody wants to hear about how far behind their child is and how many more additional services they will need. This assessment was another one of those appointments and momma was having a hard time. She didn’t do or say anything wrong, she just wanted to brag about her baby. She wanted to brag about the time Peanut said specific words (kind of), pointed to the horse (possibly accidentally), brought her the toy momma asked for (etc). Momma wanted to brag about her baby, just like any other momma and daddy would.

Bragging about your child in itself is not a bad thing but it can be detrimental to your child’s treatment if the timing is not appropriate. In order for your child to receive the appropriate services then the accuracy of the assessment is important. In order for the assessment to be completed appropriately then you need to provide accurate and truthful information, no matter how hard that may be.

Let me explain. You see although your child may have said that one word that one time it does not translate to a completed mile marker. When you are answering the questions provided by the assessor you need to ask yourself. Were my child’s actions intentional, appropriate to the situation and repetitive? Or were my child’s actions a one-time event. That does not mean that you can’t be proud of the action but does that translate to an achieved goal? I understand that we want to be proud of our children and brag about their accomplishments and by all means brag away. If you’ve looked at any of our accounts for Peanut you know we love to brag about her actions and share her accomplishments. However, when it comes to assessments, take a step back and really think about your child’s actions, behaviors, and concerns. Think about those fears that you have, the questions you are afraid to ask and concerns you are scared to inquire about and ask away. As painful as it may be at the time, in time the benefits will be visible. You see, the only way your child will receive the services they need is if you advocate on their behalf. You are not only your child’s parent, you are their biggest supporter and advocate. So don’t be scared, advocate away.

img_2531.jpgAdvocating for your child is not only about requesting services and calling about appointments. Advocating is about being truthful about your child’s actions, behaviors, and your concerns even if it hurts. You are your child’s biggest advocate. No one knows your child and their needs better then you do.  Although your service providers, behavior coaches, social workers, support staff may have good intentions for their recommendations they also represent their organizations, you don’t. You are there to represent your child and advocate for them. Don’t assume that others will do the same. I know that Jana’s service providers have grown to love her but not one of them loves her more then I do, cares for her more then I do. Because of this, I should not expect them to be a louder voice for her than I am. I am here to represent her, advocate for her and if that hurts you or intimidates you, I’m sorry. We can still be friends, just don’t get in the middle of a parent and their child.

So please continue to brag and share all of your child’s accomplishments no matter how small they may seem. We will cheer right along with you and continue to offer support and encouragement. And when it’s time to get down to business be your child’s loudest support, voice, and most important advocate.

Down Syndrome Diagnosis

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IMG_2523Our story is a little different than a lot of other families in the Down Syndrome community.  We knew about Peanut’s diagnosis before we had any emotional connection to her at all.  Honestly, we could have easily said no to taking her…a few others did.  But because of this, I often wonder if Peanut’s birth family knew, and if they didn’t, did the doctor’s contribute to their fears?

I have heard countless stories of how a family received a diagnosis.  Starting from in-utero where abortion is instantly pushed.  One mama told me that every doctor’s appointment she went to, the push for abortion was there.  She was told all about how her child would struggle, the health issues, the problems that will come.  They couldn’t understand why she just wouldn’t listen and “get rid of the problem.”

I’ve heard stories of parents finding out after birth that DS was now a reality to them.  Some have shared stories of the doctors being scared to even look at them.  They give the diagnosis as if it is a death sentence.  Leaving the family feeling lost and alone, and “stuck” with a broken child.

Did Peanut’s family fall into stories like these?  Did they have a health care provider only focus on the negatives of DS and not share any positive?  Did they make them feel that Peanut wasn’t capable of their love?  I wonder, if they received a positive outlook on DS, would they have chosen to keep her instead?

Why is the diagnosis story so important?  Because now more than ever before, we are seeing a diminishing lower of DS births due to abortion.  As well as thousands of children with DS awaiting their adoption.  Could some of this have been prevented if the health care providers provided accurate information?

Organizations like the Down Syndrome Diagnosis Network are working diligently with healthcare providers around the world to help them deliver a DS diagnosis correctly.  They are working with families as they process this scary information, and provide support and love when it seems hopeless.

Individuals with Down Syndrome live much fuller longer lives now.  No longer are they being shipped off to hospitals to live out their lives alone and experimented on (yes, something that happened often just a few decades ago).  Instead of the life expectancy being in the mid 30’s, adults with DS are living far into their 50’s and 60’s.  A lot can attend college, hold jobs, get married and even live alone with low supervision.

IMG_2522Receiving a DS diagnosis is scary!  I cannot stress how much, how utterly terrifying it is to find out your baby will have to work harder and experience more health issues than typical children.  Parents often feel very overwhelmed and worried they will not be able to handle what comes next.  With this, decision based on fears and emotions are being made and families are not given the full story beforehand.

Down Syndrome is not a death sentence!  Down Syndrome brings joy, laughter, happiness and love to our world.  It has it set backs, hardships and pain, but man oh man, does the good outweigh the bad!

 

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!!