Hannah’s Second IFSP

Two weeks ago Hannah’s two Birth to Three teachers, Maureen and Anne, came over to write Hannah’s new IFSP. It wasn’t as bad as I was making it in my head (see previous post). I knew they were going to ask us for a new goal for Hannah and the only idea I kept going back to throughout the day was for Hannah to crawl. It’s a goal that’s farther out than the typical 6 month range but I don’t see any reason not to dream big.

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There will be quite a few steps to reach this goal. First, Hannah will need to learn to go from sitting to laying down without toppling to the side, doing a ninja roll, and looking around to see if we noticed. We’ll also need to work on her arm strength, which means more tummy time even though she loves sitting. The hope is that she’ll eventually start to pull her knees to her body while she’s pushing up with her arms. I can’t remember the rest of the steps but I know the team will remind me as we go along.

Aside from the main goal, Maureen listed other developments that we should be working on:

For playtime, we want to see Hannah banging toys together or against something else (the floor, highchair). We know she can grab toys with either hand, as well as move things between her hands, but now we want to see her reach across her body to grab something. This means strategic toy placement and being active participants in her playtime as opposed to solo playtime in an activity gym or bouncer. We should also give her multiple toy options and let her choose the one she wants to play with.

In the social/communication department we want to see Hannah continuing to give us pre-communication signals. For example, if we’re bouncing her and we stop, Hannah will keep bouncing to communicate that she wants it to continue. I think Hannah already does a great job of communicating when she’s done with her bottle (swats it away from her face), wants more baby food (reaches for container and whines), or wants more tickles (grabs your hand and pulls it to her).

I asked about Speech Therapy but Maureen doesn’t think it’s necessary at this time because Hannah is vocal and makes B, D, and M sounds. What we can do to help her speech is have conversations with Hannah so she can learn about back and forth communication and responding. I think most of us do this anyway but we’ll make sure it’s a regular occurrence. We’re going to start basic sign language like “more” and “eat,” which Maureen will discuss with the daycare teachers next week. Hopefully they’ll be on board with it since they see Hannah 40+ hours a week and have the most opportunity to practice with her.

In the two weeks since the meeting we’ve also moved Hannah out of the baby tub. The kid loves it! She’s particularly interested in the drain of all things. Since Banana’s focused on something lower than her I’ve been having a hell of a time trying to wash her hair. I even bought a little visor off of Amazon but it doesn’t make a water tight seal around her head. She doesn’t seem to mind cups of water streaming into her face but she looks a little rough when the bath is over…

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It Finally Happened: The R Word

I’ve been dreading the day someone uses the R word around me. Butterflies in my stomach, lump in my throat kind of dread. I thought I had a good idea of how I could respond calmly, stern yet polite. I was completely shocked by who ended up saying it to me and the ability to respond was nowhere to be found.

I was involved in an unnecessary customer-caused crisis at work. A coworker and I were discussing the customer’s needs with a Sales rep, someone I hadn’t met until that moment but will be working with often.

Instead of saying ridiculous, absurd, poorly planned, shit-show, or even cluster-f*ck, he called the situation we were in “retarded.” My physical reaction caught me off guard. My hands turned to fists, my shoulders tensed, and I felt like I’d been slapped in the face and punched in the stomach. I looked at my coworker and saw a look of shock on her face.

Shortly after, the Sales rep and I were standing in the office making forced small talk while we waited for someone. I told myself I could casually bring it up in conversation…

“Oh, you live in New Jersey? I used to live there! By the way, using the R word is disgustingly offensive.”

The more I strategized, the madder I became and the less I wanted to look at him, speak to him, or help him. Clearly not acceptable behavior while at work. I put on my big-kid gloves and swallowed the emotional vomit until the customer’s problem was handled and I could have a minute alone. After a couple hours, I was finally able to retreat to the privacy of the company’s lactation room and let the pent up emotions run wild.

I was mad because, not only did this guy offend me within the first three minutes of our conversation, but he continued to be rude and pushy for the remainder of his visit. It annoyed me that someone so unworthy of my energy had affected me to that degree. (I found out the next day that other coworkers who helped resolve the customer’s problem were also irritated by the guy’s behavior and offended when they learned what he said.)

I was embarrassed because I felt like a hypocrite. I’m guilty of using the of the R word in my pre-Hannah life. Instead of saying drunk, stupid, or lame, I shamefully used “retarded.” I even caught myself saying it a few times after Hannah was born. I always knew it wasn’t a polite word to use; however, it somehow seemed acceptable in the privacy on my own world. If I’ve never been perfectly politically correct how can I expect the same from others?

I was worried because we’re almost 9 months into this journey and I wasn’t ready to hear that word. I wasn’t ready to defend Hannah. I didn’t want to hold back tears while desperately trying to lecture someone on which slang words are appropriate. It was instant defeat. I feared I’m not the advocate that Hannah deserves.

That night I told Pete the whole story and let myself get worked up again. We talked about how it’s a word that means so much to some but absolutely nothing to others, and that we should prepare ourselves to continue hearing it used unnecessarily. I can only hope that next time it happens I’m better prepared to spread some serious awareness.

CDSC 30th Annual Convention

I’m baaack.

I wish I could say last week away from the blog was productive and full of exercise, cleaning, writing, and fun family adventures. In reality, it was a busy week at work and I fueled myself with leftover Halloween candy, causing me to fall asleep every evening after putting Hannah to bed and wake up sometime between 8:30 and 9:30 pm in a total haze.

I was dying for this particular week to end because I was looking forward to attending the CDSC’s Annual Convention. My parents came up to join me while Pete and his mom tag-teamed watching Hannah. The convention was great and made me very excited to attend a national one in the coming years.

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The schedule was broken up into 3 sessions with 5-6 different program options, two were held before lunch and the Keynote speaker and the third was after lunch. At the very end of the day the older kids with Ds presented the posters they worked on during their Self Advocate sessions. The day ended with a presentation by Mark Hublar.

Session 1

10 Things Every Parent Should Know about Birth to Three – tips on effective ways to deal with disagreements or an unresponsive B23 team. The moral of the presentation was to check B on your IFSP if you don’t agree with it and your team has 30 days to resolve.

The IEP is the Key to Effective Services – main message was most IEP’s are significantly flawed and that parents must hold teachers to higher standards of accountability

Session 2

Mindfulness, “Learning to Surf Life’s Waves” – total bust, it turned into a mini-therapy session with 10 minutes of meditation techniques

American Academy Pediatric Guideline Review – detailed overview of every area where a child with Down syndrome needs health supervision based on consensus recommendations of a panel of AAP geneticists and pediatricians

Keynote speaker 

Amy Allison, Executive Director of the Down Syndrome Guild of Greater Kansas City. See recap after the break.

Session 3

Planning for the Future of Your Child with Special Needs – an overwhelming amount of information on how to plan for Hannah’s financial future

Knowing the Red Flags of Vision and Learning – evaluation by an ophthalmologist is “better” than seeing an optometrist, but strongly recommended an optometrist with experience in behavioral and developmental vision care

Presentations by Self Advocates

Most people left before this but I wanted to stay to show support and get an idea of what the life of a teen with Ds is all about (basically friends, school, Taylor Swift).

Presentation by Mark Hublar

At 51 years old Mark is an amazing self advocate. He lives on his own, drives a moped and car, has a job, and travels the country to speak, lobby, and campaign for Down syndrome awareness.


Amy Allison’s presentation focused on how to build your tribe and touched on getting through IEPs, and how to raise a strong self advocate.

Build your Tribe

Drain your moat – don’t put yourself on an island

Teach by example – using People First language, etc.

Provide strategies – help your tribe

Check ego at the door – what you want might not be best for your child

Give second chances – but third chances are rare

Focus on today & don’t borrow trouble

Make & share your long range vision

Make friends with your neighbors before you need them for an emergency

If you want people to support your child, you need to support their children also

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IEP

Make an “All About Me” book

Bring treats and a picture of your child

Are you making extra work for them?

Celebrate successes together

360* approach to behavior

Find the professional who wants your child

Have an exit strategy when trying new things

Volunteer and join PTA

Raising a Happy & Strong Self Advocate

Develop good social skills and coping skills

Ask for help and make mistakes

Have disabled and typical friends

Set bar high

Recognize potential & challenge them

Break the prompt, praise, and reward cycle

31 for 21: G is for Grabbing

Pete and I are fully aware that Hannah won’t hit developmental milestones at the same time as her typical peers, and that when she does, the moments might be sweeter than they would for typical parents. I must be the world’s biggest sap because even the smallest signs of progress cue the waterworks.

Over the last few weeks Hannah has developed a huge desire to grab all.the.things. More specifically, grab them with both hands. This is a big step for her because she had a tendency to only use one hand at a time, and usually favored her left. My dad, Jeep to Hannah, also noticed a difference in motor skills between the two hands. If she was under an activity gym, the left hand would smash the toys and the right hand would try to grab them. (Our Birth to Three teacher, Maureen, said it’s common for motor skills to develop differently.)

I started to notice the grabbing when Hannah was in a seated position. As I’ve learned, this is because babies will feel more comfortable using their arms if their heads and torsos are secure. Anyway, in the car seat she’ll grab the blanket before I can even place it on her lap, or she reaches up to grab the plush fish dangling from the handle. When she’s in her rock n’ play, she goes absolutely nuts when she sees her cloth book Fuzzy Bee and Friends, crinkles the pages, whips the book around, munches on it. With both hands.

So far the best demonstration of her grabbing skills was in the bath the other night. What you don’t see in the video  is an extremely proud momma with tears in her eyes. A momma that loves to see the pure joy in her daughter’s eyes for a cup. A momma smiling so hard because her little one wants to grab something while holding on to another item. A momma that clearly needs to bring a box of tissues everywhere she goes.

Click here for video in case you missed the link above.

31 for 21: D is for Down Syndrome

Did you know there are three types of Down syndrome?  Trisomy 21 (nondisjunction), translocation and mosaicism.

TRISOMY 21 (NONDISJUNCTION)

Down syndrome is usually caused by an error in cell division called “nondisjunction.”  Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two.  Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate.  As the embryo develops, the extra chromosome is replicated in every cell of the body.  This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21.

TYPICAL CELL DIVISION

Typical Cell Division

TRISOMY 21 (NONDISJUNCTION) CELL DIVISION

Nondisjunction Cell Division

MOSAICISM

Mosaicism (or mosaic Down syndrome) is diagnosed when there is a mixture of two types of cells, some containing the usual 46 chromosomes and some containing 47.  Those cells with 47 chromosomes contain an extra chromosome 21.

Mosaicism is the least common form of Down syndrome and accounts for only about 1% of all cases of Down syndrome.  Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome.  However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

MOSAIC CELL DIVISION

Mosaicism

TRANSLOCATION

In translocation, which accounts for about 4% of cases of Down syndrome, the total number of chromosomes in the cells remains 46; however, an additional full or partial copy of chromosome 21 attaches to another chromosome, usually chromosome 14. The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome.

As usual, this information is from the NDSS website

31 for 21: A is for Advocate

ad·vo·cate

Noun

a person who publicly supports or recommends a particular cause or policy

synonyms: champion, proponent, spokesperson, campaigner, fighter, crusader


Advocate is one of the many words that has been added to our vocabulary since Hannah’s birth. Like any parents, Pete and I will always be our child’s biggest supporters. Advocating, however, is not just supporting your child – it’s fighting for them. You don’t back down. You’re a gladiator.

We already had to try our hand at this advocating thing when we insisted that Hannah’s heart surgery needed to be sooner than planned, and thankfully that fight was pretty easy. There will be more to fight for as Hannah grows up. We will be on the front lines in the battle for what’s best for her and she will be there right along with us. I hope to raise her with enough empowerment to advocate for herself one day.

The Aftermath of Hannah’s Diagnosis

This post is essentially what prompted the idea of the blog. Every word existed in my mind for months but it took weeks to actually write them all out. Then it took another week to work up the courage to sit here, ready to give the world a piece of my heart. There were a lot of tears and a lot of chocolate was consumed in the making of this post.


My heart was broken when we received Hannah’s Down syndrome diagnosis. It was as if the labor contractions I had experienced just 30 minutes earlier migrated to my heart with the sole goal of demolishing it. The emotional shock was so overpowering that it made my body ache. I was physically present but my mind was disconnected from reality, like it was all a dream. It’s a sensation I hope to never experience again.

Hannah was kept in the nursery for testing, then transferred to a children’s hospital in the evening. It was about 36 hours before I saw her again, the strangest and most depressing 36 hours of my life. My soul hurt and my heart was empty, crushed. Every positive emotion connected to bringing a child into the world was cancelled out by an equally powerful negative emotion. The strongest of all was fear. I was afraid no one would love Hannah. I was afraid I wouldn’t love Hannah.

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Hannah’s ride to the children’s hospital

I practically ran through the hospital’s parking deck the morning we went to see her. My stomach was sick from a mixture of nerves and adrenaline. I needed to see my baby. I needed to fill that emptiness. I needed her to put my heart back together. One look at her chubby face and she had me. One look and I knew I’d love her unconditionally until the end of time.

My love for Hannah didn’t change the fact that I felt cheated and the grief of losing the daughter I was expecting hit me hard. Even though I now know the grieving period is normal and expected, there are days that I’m ashamed of my weakness and embarrassed by my ignorance.

An innocent Google search to learn about my daughter overwhelmed me with an endless supply of statistics and probabilities that did nothing but encourage more anxiety and uneasiness. Family members writing in Down syndrome forums said the children in their lives were miracles and blessings. I thought these people were insane. How could a child with physical and cognitive delays be a blessing? You were blessed with a life of exclusion, stares from strangers, a child that can’t and won’t be able to do the simplest things? I was sure these people were lying to themselves. Hannah’s wasn’t a special baby – she was a Special baby. She had a defective heart. She was broken.

I blamed everyone for Hannah’s extra chromosome. I told myself we should have waited longer after our miscarriage, that my body clearly hadn’t understood the science of multiplying cells. I blamed the doctors for never noticing any signs on the ultrasounds. I blamed my obstetrician for assuring me that my genetic test results were good enough. I blamed myself for not trusting my gut and insisting on an amniocentesis. I blamed God. It felt like a punishment, a life sentence of hard labor for two people who were already working hard. I didn’t understand why God would give a child with special needs to a couple that was not financially or emotionally strong enough to handle her.

Daydreaming about the future would spiral out of control. That one chromosome plagued every thought and crushed every dream. Hannah would have friends as a toddler, while she was still cute and her delays were shrugged off as being young. After a few years the cuteness would wear off and our friends would stop inviting us over. It would be too hard for them to have us around. Our only friends would be other families in the Down syndrome community. People would stare at us in public, feeling pity not empathy, for our sad lives. Hannah would struggle in school and spend recess and lunch alone for more than a decade of her life. Afternoons would be spent in therapy and doing physical and mental exercise instead of chasing friends in the backyard, squealing in delight. Hannah would live with us her entire life. There would be no retirement. We wouldn’t get to cash out at 65. We wouldn’t have a child to take care of us in our old age. We would not be grandparents. We would only be Mom and Dad.  

One day the grieving stopped. When Hannah was about 3 months old a coworker asked me how she was doing. My response was a single word – perfect. It was true. Hannah always was and always will be the most perfect human being in the world. I was the broken one. I had no experience with the world of special needs prior to Hannah and had no concept of what Down syndrome meant for our future and for Hannah’s life. As I educated myself I became disgustingly aware of my ignorance. I didn’t know we joined a community of beautiful and courageous families. I didn’t know there are advocates whose life work is to spread awareness. I didn’t know to stop seeing Down syndrome as a disability.

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I still have bad days and struggle to drown out the ‘what ifs’ and ‘how comes’. I see children younger than Hannah practicing a skill that she’s not ready to attempt. Comparison is an ugly game and we will rarely win. The future still scares me. If I’m not careful my imagination will push me over the edge into a sea of hopelessness. I remind myself that Hannah will run around with friends. She will ride a bicycle. She will be included in school. She will go to college. She will do all these things and many more but she will do them when she’s ready. No one will rush my baby and no one, God help them, will limit her.

When I look at Hannah I don’t see Down syndrome. I see a little girl who wakes up every morning with a smile. I see the determination in her eyes to grab a toy just out of reach. I see a scar that reminds me of how much she struggled during her first few months of life. While I’m not at the point where I can say Down syndrome is a blessing, I know that Hannah is. Every day I am thankful for the time I have with her. I am thankful that her heart defect was repairable. I will get to see her grow up, unlike so many families who have lost children. Hannah was given to us to teach us about true love and compassion, to make us strong, and to spread joy (which she already does so well). I would never take Hannah’s extra chromosome away from her. It is the foundation of her life. Without it there would be no Hannah and I can’t imagine my life without her.

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12 Weeks after Surgery

This past Friday marked 12 weeks since Hannah’s AV canal repair surgery. It’s amazing how time flies when you’re not looking for signs of heart failure.

The week before the surgery we traveled to Virginia Beach for my sister’s wedding. We had the cardiologist’s approval for the long road trip and the wedding festivities were a welcomed distraction. It was the first time Hannah met my two brothers and most of my extended family. We were there to celebrate the union of two people in love but I was also celebrating the beginning of Hannah’s new life.

The rehearsal dinner was in a private room at a local restaurant. I didn’t know most of the people in the room, only the bridal party and some familiar faces from the bridal shower., but everyone knew of Hannah.

Hannah was a perfect dinner guest. She was quiet and there was an empty corner for her to play on a blanket. She loved to stare at her hands. There was nothing more marvelous than the back of her own hands. I had to interrupt play time to give Hannah her meds. Three times a day we fought with Hannah’s tiny mouth, tricking her into opening it, navigating around her tongue, trying different techniques to get her to swallow the sugary liquid.

I fished through the diaper bag for the two bottles and a syringe. I always started with the easy one, the one that made her smack her lips for more. The second one had an artificial banana flavor that even made me cringe. I wiggled the syringe to the corner of Hannah’s mouth and released a drop or two. Rest and repeat. Rest and repeat. Rest and repeat.

I suddenly became very self-conscious and wondered how many people were watching us. Sitting in a room of normal people with their normal lives I was giving my baby medication to delay heart failure. How did this become my normal? Counting grams of gained weight and milliliters of milk consumed. Listening for labored breathing and checking to make sure she was still breathing. EKGs, echocardiograms, and pulse oximetry. Waiting in exam rooms and waiting for a surgery date. Four long months of normal.

One week after surgery we had a different baby and our normal changed. 

Hannah loves to eat and hates to nap. She refuses to snooze the day away when there’s so much playing to do. A few thirty-forty minute power naps are all she needs to feel refreshed and energized. Hannah would spend all day in the activity gym if she could. She rocks and rolls and flips and spins. She whacks and kicks her toys with force and pulls them into her mouth. Anything that goes near her mouth must be tasted. On Saturday while I was changing her diaper, my left hand holding her feet up, she pulled her feet towards her face, guided my forearm to her mouth, and gnawed on it like the world’s cutest zombie baby. When it is time to eat, at prompt three hour intervals, seven ounce bottles are guzzled faster than she used to laboriously drink three ounces. The hearty burps and belches are music to my ears.

Her cries are loud and long-lasting now. Hannah’s first ever baby meltdown only lasted ten minutes because she didn’t have the energy to keep crying. It happened in the early evening and knocked her out until morning. The new Hannah can wail and, of course, the first time she showed us we were hanging out with friends. Forty-five minutes of shushing, bouncing, rocking, rejecting bottles and pacifiers, and sweating (me and her) for no apart reason. Four nights in a row. Poor Gamy was ready to move out. We’re fortunate she doesn’t demonstrate her new skills that often.

Normal is easier now and much more fun. A heck of a lot chubbier too.

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Doctors and Daycare

This was the busiest week we’ve had with Hannah since her surgery. Apparently I lost my mind one day and thought it was smart to schedule two doctor appointments and start daycare all within 3 days.

Monday was Hannah’s fourth BAER hearing test that was actually completed. Even though the results of the first three tests ranged from really bad to pretty good, they were easy to administer because pre-surgery Hannah could sleep like a champ. A test with post-surgery, 6 month old Hannah required planning and a killer bicep workout for momma.

I fed Hannah an hour earlier than usual that morning hoping she’d be borderline hangry when we finally got set up in our room. The audiologist applied the electrodes to Hannah’s forehead and behind her ears and left us to eat and snuggle. Hannah was nearly finished with her bottle and kept drifting off to sleep; however, anytime I’d move the bottle away from her mouth, she’d jolt herself awake and stare at me. She clearly knew something fishy was going on.IMG_5304

I wasn’t having any success rocking her to sleep in the chair so I hoisted her up against my chest for some slow dancing and serenading. This is Hannah’s go-to sleep position but it kills my arms because she turns into dead weight. Once Hannah was asleep it was impossible to move her into a different position without waking her up and/or pulling off the electrodes which meant another 40 minutes of bicep quivering. It was worth the workout because Hannah finally has 100% hearing in both ears!

Tuesday was Hannah Banana’s first day at daycare! I was not at all surprised that I cried while getting her dressed and giving her a pep talk (be nice, make friends, don’t be stingy with the smiles). I went in a little early to meet the teachers and discuss Hannah’s physical abilities and limitations, Birth to Three visits, and her general likes and dislikes. Grandma also stopped by to see the facility and wish her Sweetie Pie a good first day. After a half day on Tuesday and a semi-half day yesterday it seems like Hannah is adjusting very well and she even learned some new noises to make.

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Yesterday was a pediatrician appointment to follow up on Hannah Banana’s post-surgery weight gain. I enjoy going to the pediatrician monthly because I get to ask my random questions instead of turning to Google for help. After confirming that Hannah’s height and weight are perfectly on track (82nd percentile for children with Down syndrome/50th for typical children) I asked the doctor about normal vs abnormal spit up, the super cute drool rash Hannah’s been sporting lately, and got approval to introduce cereal/oatmeal. While playing with Hannah’s crazy hair, the pediatrician noticed that the left/back of Hannah’s head is slightly flat, which is no surprise since she favors that side.

After work, Pete and I discussed the last three days while we played with Hannah. At one point we talked about how she’s still “crying it out” for 10 minutes or so most nights and for naps on the weekends. I told him it was more of a fussy cry now, rather than the bloody murder screaming when we first implemented the plan, so it didn’t worry me (or the pediatrician). I should have known I would jinx myself! I gave Hannah her bedtime bottle and gently put her in the crib while she was barely awake. As soon as I turned to leave she woke up crying. The crying turned into screaming and I couldn’t wait the full 10 minutes to check on her. The poor girl was sweating and crying real baby tears. I couldn’t let her cry like that after being such a good girl all week.

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I should have known this fussy face was bad news

I scooped her up and held her tight. She instantly stopped crying, wrapped one arm around my neck and one around my shoulder, and burrowed into me. There are times, like last night, when Hannah wants to snuggle so badly that her body melts into mine. I didn’t realize that I need to cuddle her just as much as she needed to cuddle me. We hugged and rocked and her breathing finally slowed down, her exhales trembling slightly. We sat in the dark, melting in to each other.