ENT

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Yesterday we headed back up to San Diego to see one of our favorite doctors.  Peanut’s

ENT at Rady’s, Dr. Brigger. He is an amazing doctor!  She loves him and he always does so great with her.  He was the one who removed her tonsils and adenoids and discovered her narrow trachea.

We weren’t sure what to expect at yesterdays appointment.  We know she needs to have her trachea repaired.  We know he wants to try to do it before her ASD is fixed this summer.  But other than that, there is no plan in place.

He started off the same way he does every appointment.  He checked and cleaned her ears.  Not sure if you know this or not, but children with DS are prone to have a lot of wax buildup in their ears.  A lot of this comes from having the narrow ear canal.  So each time he sees her, he uses a small scraper, holds her down, and cleans her ears.  Usually, it doesn’t bother her much.  With the exception of being held down, she actually does great for her doctors.  It’s a simple procedure and doesn’t hurt her at all.  Yesterday though, you would have thought he was cutting her ear open.  She screamed, yelled and cried the entire time.  Only stopping once she was up in our arms again, all smiles and giggles.

IMG_4686Because of the screaming though, he was able to hear her airways when she gets worked up.  (Dr. Brigger, we hear that pretty often, stop by anytime!)  He was actually pleased with how she sounded.  Apparently, loud is good.

He is insistent that we do another sleep study.  We tried to explain that if she slept the 5 hours they need to monitor, we probably wouldn’t be seeing him.  He didn’t think that was reason enough.  So now I have to schedule another one…they will hook her to about a million wires and monitors, put her in a strange crib and tell her to go to sleep.  I’m sure Juan will have fun with that. 🙂  Nope…we’ll both be there.  We have this “If I’m going down, I’m taking you with me” kind of relationship. lol

He also wants to wait to see how her appointment with her cardiologist, Dr. Fagan,  goes in March.  She will be having an EKG and Echocardiogram done to determine the plan for her surgery.  Both doctors will work out a plan and go from there.  IMG_4713

I’m not sure what the trachea surgery installs, but we have a feeling its pretty invasive.  We think that is why he is trying to push it back and consult with Dr. Fagan first.  These are two very big procedures she needs to have done, but that I am dreading!  I can’t imagine how the recovery will be!

So now we just wait.  March will be a big month for us.  As well as February, we have a big youth trip as well as hosting The Night to Shine in our area.  Sometime this year you might catch Juan and me in a coma from exhaustion.  Not sure if that fits into the schedule though….

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Safety First

Recently I got a chance to chat with a beautiful mama named Carrie. Her son has Autism who, like Peanut, is non-verbal. He uses a speech device that helps him communicate. Because of this, she wanted to make sure he could be properly taken care of in the event of an accident. So she made him a medical car seat cover. Since then she has made many for other families just like her. We do everything to protect our babies, but what if we can no longer communicate their needs?

I spoke to Juan about it. He used to be an EMT/Firefighter and he said things like this would really help a first responder. Their first concern is children in the car. So if there was a way they can help or communicate better with the child, it can make things go a lot smoother.

So now I have something for Peanut to help communicate her needs in the chance I won’t be able to. But it got me thinking, this is so important for even typical kids! Thank God we’ve never been in an accident, but if we did, I would have wanted the first responders to know who the kids are.

She even adds if there are songs or things that might calm a child down. Just something small that could help your child in a time of crisis.

If you would like more information on the seat covers please head over to HenryDarling and if you use PEANUT at checkout you can even score free shipping!! We love supporting small shops ran by mamas in the community.

Looking Good

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Its been a big week for Peanut!

First, you saw on Monday that she has been making great progress with her walking skills  This morning she has been averaging 10 steps by me only holding the monkey leash on her back!  Her confidence is growing and I can see her making, even more, IMG_4603strives the more we work on it.

Wednesday was huge!!  Peanut went to school for the first time!  Her in-home therapy sessions will now stop and she will attend class once a week for 3 hours.  So even though she loses the one on one help, she is able to socialize and learn alongside some of her buddies.  This has been something Juan and I have been terrified of!  I have not missed a single therapy session with her.  I can’t even think of a time where I’ve been home and she wasn’t!  If I was freaking out, I don’t know how Juan held it together!  Tuesday night we went and got her a new lunch pail and prepared for her big day.  We had no idea how she would do.  Would she freak out when she realized we weren’t there?  Is 3 hours too long for her?  Will she get overwhelmed with the new environment and kids?  Everything was up in the air!

IMG_4506We arrived and she walked in like a pro!!  Using her shopping cart, she checked things out for a few minutes, then walked right over to the table, sat down and looked at her teachers like “Ok, let’s get started!”  She blew us away!  Just like a big girl, she was more ready for this new journey than we were!  We stuck around for a few minutes but wanted to give her some space.  We left the class and our Peanut in the hands of her therapist.  (It wasn’t horribly bad btw…her regular in-home therapist Maria was with her the whole time!)

When I arrived to pick her up, they said she did great!  They were even surprised considering it was her first day!  I was so excited to see her messy and exhausted.  She crashed on the way home and took a good 3-hour nap.  I count that as a good day 🙂

 

Yesterday we headed up to San Diego to see her GI doctor.  This was our 6-month return visit to monitor her growth and weight.  We had been concerned about her size and weight gain.  Throughout the past year, she has consistently been around 21 lbs.  She has worn the same size diapers (size 3) and size 18-month clothes.  Basically, she hasn’t grown.  This has terrified me because she SHOULD be getting bigger.

6 months ago when we first saw the GI, they had us add high content fatty foods to her diet.  This brought in regular PB and honey sandwiches, pasta, chicken, veggies, avocado, whole milk, grass-fed butter, and lots of cookies and snacks.  Truthfully, our girl can eat!  But her size basically looked the same.  IMG_4567

So yesterday heading into the appointment we were worried.  Discussions about doing a scope or biopsy had taken place during past appointments.  They wanted to monitor her first to see if the diet would help at all.  Guess what….. it did!!  She gained a whopping 11 oz and grew about 1/4 of an inch.  Now, that sounds like nothing.  We were still concerned it wasn’t enough.  But they said the goal was for her to gain 5 grams of fat a day, and she gained 7!  So she passed the goal set.  The doctor informed us that since she is active and hyper (literally didn’t sit still during the whole visit) that is why she is burning her calories.  They were very happy with her progress.  We have an appointment set up for May, but other than that, the worry is gone!

So all in all this has been a great week.  I’ve been working diligently on getting my story down on paper….or computer I guess.  Well, see what goes from that.  But it has been very therapeutic.

I see some big things happening for our family this year.  We still have a big appointment next week with her ENT to discuss her trachea surgery we’ve been waiting for.  Pray for that about that please!  As well as her cardiologist appointment coming up next month.  She’s a busy little girl 🙂

Monkey on her Back

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I have a confession to make.  You know those safety harnesses that you sometimes see parents using while their kid runs around the mall.  Let’s be honest, they are basically leashes.  Well, anyway, I used to really judge anyone who used one.  I looked at is as degrading to the child.  Treating them like a dog.  I mean, I just couldn’t understand why the parents couldn’t teach their child to not run away or simply hold their hand while they walked.  That’s what we did to the big kids, it seemed simple.

How closed minded was I?!  I had no idea if the child had a disability and maybe it was their only way to have some freedom.  I’m sure that’s not the case for every child who uses them, but still, it just shows how uneducated we can be about differences.  I feel so horrible that I ever looked down on another parent, not knowing any details of their life or situation.

So whats my point?  Well, Peanut is now the proud owner of a Monkey Baby Leash.  And I LOVE IT!!  Last week her therapist and I were talking about possibly using something like it to see if it would give Peanut the confidence to walk on her own.  So far we had been lightly touching her shirt, but it was enough for her to think we had a hold on her.  Making her able to take 3-4 steps.  We kinda thought the leash would trick her mind into thinking that she was secure and being held.IMG_4486

So with the magic of FB, I found one for only $5!  I jumped at the offer and purchased it right away.  After a quick bath in the washing machine (using super hot water and color-safe bleach) we tried it out.  Instantly she took about 4 steps!  We were thrilled.  But I didn’t want to push it.  She has the tendency of getting mad when we push her to new things or change our approach.  So we only used it during good moods.  Last night she surprised us with taking 6 good steps with it.

So this morning I took our new pal to our PT appointment.  Her therapist was excited to try it out on her and we were so proud of the progress she made.  Not only was she taking 7-10 steps now, but she was also stopping, adjusting herself and even walking sideways to get where she wanted.  All we had to do was tell her we had her, and let the leash slack.  The harness kept her feeling secure, and she had no idea that this was all on her own.

Once again, the progress to getting her to walk independently has improved.  I am so excited about what this could mean for her.  Not only independence but also more integration with kiddos her own age.

So, lastly, I want to apologize to any mamas I judged by using the baby leash.  I don’t know your story and I shouldn’t have assumed I knew more.  I will use this leash every day, everywhere, if it means that my girl can walk.  We are excited about this new development and just anxious to see where it takes her.

Here are some videos of her therapy session:

How a $12 baby doll and a doctor set made my Christmas!

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At almost each therapy session or evaluation, we cover whether or not Peanut is correctly playing with toys.  Usually, this is easy answered…no she doesn’t.  Toys get thrown, shaken, sorted and more often than not, they are put in her mouth.  This has been where the differences between Peanut and her other Down Syndrome peers has been evident.  Although sometimes its a milestone children with Down Syndrome hit later than typical kids, the majority of them have no issue with pretend play.  I’ve watched her buddies dance along with toys, stack blocks, race trucks and even sang karaoke.  These are all things I’ve noticed them developing, and Peanut staying behind.  This is all part of her Autism diagnoses.  Another separation from her peers.

I found this in an article about Autism Play.  (Why Do Autistic Children Play Differently?)

Lack of symbolic play skills. Symbolic play is just another term for pretend play, and by the age of three, most children have developed fairly sophisticated tools for engaging in symbolic play both alone and with others. They may use toys exactly as they’re designed—playing “house” with a pretend kitchen and eating plastic food. Or they may make up their own creative pretend play, turning a box into a fortress or a stuffed animal into a talking playmate. Children with autism rarely develop symbolic play skills without help. They may enjoy placing engines on a track, but they’re unlikely to enact scenes, make sound effects, or otherwise pretend with their toy trains.

Lack of social communication skills. In order to be successful in pretend play and imitation, typically developing children actively seek out engagement and communication, and quickly learn how to “read” the intentions of other people. Children with autism tend to be self-absorbed, and have little desire to communicate or engage with playmates.

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Which is exactly what I see in Peanut.  She sees the object as just an object, not what the possibilities could be.

Enter in a cute little-naked baby doll!  I found this doll on Amazon and wanted to try it out.  Randomly she has been intrigued by dolls.  Some of that is probably because I started watching a baby girl named Ava.  Peanut has loved hugging her and “helping” me with her every day.  So we wanted to try it out.

81dxviid4vl-_sl1500_.jpgI also purchased these magic baby bottles.  You remember these right?  You turned them upside down and watched your baby doll “magically” drink it all up.  I was very hopeful that Peanut would be able to learn how to feed her baby just like the good little helper shes been with Ava.  (Fyi, she has never fed Ava, she has handed me the bottle and even tried to drink it herself lol)

I was not expected what actually happened.  Almost immediately she hugged her new baby and kissed its head.  Seriously, I almost cried!!  Then I showed her the baby bottle.  I told her that her baby needed to eat and showed her how to put it in its mouth (it doesn’t actually have its mouth open enough to put it in).  I made yummy noses and told her the baby was hungry.  She took the bottle from me, first tasted it herself and even licked her lips as if she drank it.  Then she fed the baby!  Well, the bottle was basically up the babies nose and in its eyes, but I took it as a successful feeding 🙂

Truthfully, I could have screamed!!!  Here she was, doing something I honestly wasn’t sure she would ever do.  She was pretending that this sweet baby doll was real, and needed to eat.  Proud was an understatement.  She was acheiving something we were told she may never do! Image result for fisher price doctor kit

Now lets just to the doctor kit Santa brought her for Christmas.  Since she sees doctors at least once a month, we thought it would be a good way to make things less scary for her.  We really wernt expecting much from these.  Figured she would do her regular sorting or toss them around.  We were SO surprised that she first took out each toy carefully and laid them in front of her.  I sat with her and showed her what each toy did.  We checked her ears, listened to her heart, took her tempature and despensed medicine.  (Yea, we thought the shot was a syringe for meds…lol.)  This time she didnt copy my actions, but she handed me each toy to check her again.  Her sister came to join the fun and suddenly Doctor Peanut was in!  She took her blood pressure and allowed big sissy to check her.  Once again, there she was PRETENDING!!!  Our little girl was reaching a milestone that we have been working towards!!!  My heart almost exploted!!!

This has given us so much hope for our little Peanut.  Not only in just how she interacts at school with her peers, but also how she continues to develop.  Her Autism diagnosis did throw a wrentch in our plans for her.  But, it didn’t put her life on hold!  She will continue to reach new milestones, she will continue to surpise us and blow us away.  Our Peanut is tough and whenever someone tells her she cant do it… it gives her the modivation to prove them wrong!

Find Peanuts toys on Amazon:

School Specialty 16540 Lots to Love Asian Baby Doll, 10″ Size

Toysmith My Sweet Baby Magic Baby Bottles

Fisher-Price Medical Kit

New Year

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Happy New Year!  I pray you all brought in the new year surrounded by loved ones with IMG_4333much laughter and love.  Peanut, of course, was up way past midnight!  She had no idea what we were celebrating, but had so much fun watching our surrounding neighbors light off fireworks 🙂

2018 has a lot in store for our Peanut.  First, she will be starting school this month.  She’ll be going once a week for 4 hours until she turns 3 then will start full time.  We are still nervous about this, but feel like it is worth giving it a shot.

She returns to see her ENT this month as well.  We still need to determine when she will have surgery to fix her narrow trachea.  Praying this surgery will open her airways and HOPEFULLY allow her to sleep better.

We’ll soon be returning to see her Cardiologist.  We need to have an EKG and Echocardiogram done so see the condition of her heart.  Currently, she has a PDA (Patent Ductus Arteriosus) causing the right side of her heart to be slightly larger than her left.  This should be fixed by a procedure that goes through her femoral artery and we are praying they won’t need to open her chest.  From what we know, this should take place this summer.

This year is a new year.  And even though we are not the ones who do resolutions, I feel that this is a year of change and big things for our family!  We are trying to fully trust Gods way by allowing Him to guide us fully.  Last time we made this comment as a family, Peanut entered our lives…lol.  So who knows what will happen.

Also, Juan has encouraged me to share my story.  So I’ve been writing…a lot.  At first, I thought it was all going to be focused on Peanut.  She is so much a part of who I am and my daily life.  However, my story shows so much of God’s grace and forgiveness.  I feel like He is guiding me in a totally different way.  I don’t know what I’ll do with this writing when I’m done.  Maybe it will sit on my computer, maybe it will be published.  Either way, I am trusting in God to be open and share what He has done for me.

Truthfully, when I started this blog, I wanted to share so much of the joy and love Peanut has brought to our lives.  I haven’t really focused a lot on our faith here because I didn’t want to alienate or discourage others from reading it.  But, honestly, Peanut is the perfect example of Gods love and grace.  I cannot share the true beauty of her, without sharing how much God has worked in our lives.  So, for those of you who aren’t the “Christian” type, I apologize if my writings are more focused on our faith.  I pray that you continue to follow along with us.  I’d be happy to chat with you about any questions or disagreements you might have.  But I will continue to welcome and love you as you join in this journey with us.

Its a new year!  A fresh start…I don’t want to be in the same place next year.  So, let’s get this journey started!

 

Helpless

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Around 1:30 last night I broke down in tears.  Some of it was because of full complete IMG_3821exhaustion, but the majority of it was because Peanut was still not asleep.  For two nights in a row, she has not gone to bed earlier than 2 am.  For the past two days, she has not napped longer than 1 hour.  That literally puts her asleep for around 14 hours in the last 48 hour period!  Shes two…she should be sleeping around 14 hours a day!!!

But last night just broke me.  I watched her through the monitor.  Constantly moving and basically full of anxiety.  She was yelling (not crying…just yelling) randomly out of frustration and there was nothing we could do about it.  If we pick her up the cycle would start all over.  She will get extremely hyper wanting to play with us, we’ll put her back in bed, and she’ll sit there again for about 2 hours.  We can’t hold her to put her to sleep, she just refuses it.  So our only option is to let her be and wear herself out.  Now, don’t get me wrong, as soon as crying starts and she’s upset we go get her.  But for the most part, she sits for hours just playing with her blanket, her hands, looking around the room.  She’s obviously exhausted, but nothing helps shut her little brain off in order for her to relax.

This event happens almost every night, but man I felt so so horribly helpless last night.  As I watched her rock back and forth, my heart just broke.  How horrible it must be for her to want to sleep so badly but just can’t.  We’ve tried countless essential oil combinations, sleep lotions, diffusers, humidifiers, weighted blankets, sound machines, light machines, long baths, everything we can think of.  But nothing helps.  Nothing helps her calm down enough to just rest her little head and allow her to sleep.

Her insomnia is caused by both Down Syndrome and Autism.  Most children take melatonin or sleep medication to help with this.  Due to Peanut’s heart condition (that will be fixed this summer) we are not allowed to give her any sleep aid.  Because she stops breathing at least 10 times per hour, medication will not allow her body to wake itself up to breath again.  So that leaves us each night praying she will sleep.  Not just for our own sanity, but for her overall health.

IMG_3839We’re not sure how she continues to function like she does.  I’m currently watching her put a blanket over her head and peek over at me under it.  She is always trying to make us laugh 🙂  She is wanting to snack almost constantly because eating is soothing for her.  But that also means she mad at me when I refuse to let her eat the whole box of cereal.  Currently, her beautiful brown eyes have little bags under them, she’s anxious and jittery and it will be a few more hours before she’ll let me lay her down for a nap.  A little while ago she let me hold her in my arms, she cuddled into me for a few minutes and sighed.  I felt like she was telling me “I’m so sleepy Mama!”  Nothing I can do will help my sweet girl sleep.  That feeling of helplessness will stick around a lot the next few days.

This is it!!  The one thing I would change about Peanut.  The one thing I would remove from her….the one thing I truly hate that Down Sydnrome/Autism has caused, insamnia.  I am just so tired of watching our girl be so so tired!

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

 

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 🙂