Friday, October 11, 2013

Special Needs Spotlight || Julianna, Blake and Nathan



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Quick note from Miggy here...Hi everyone!  I hope you like the new look!  Personally I love it.  We're still working out a few kinks, but hopefully everything will be smooth as butta soon enough.  Thanks lovely readers for your support.  

I am so honored to be a guest on your blog, Miggy. I have been inspired by the special needs spotlights and admire all those who have special children. My name is Kera, and my husband Joel and our three kids live in Southern California. Joel is a high school English teacher and I stay home with my kids, the best job in the world! Julianna is 9, and has varying needs on the autism spectrum, which include sensory processing disorder, anxiety, speech delay, gross and fine motor delay, mild Tourrette’s, stereotypic movement disorder, to name a few. Blake is 6 and was born with mastocytosis, a rare blood disorder. And Nathan is 10 months, born with a bilateral cleft palate and Chromosome 22 microduplication. The best part is they all have red hair, and tempers to match! We certainly get a lot of attention, everywhere we go, for more reasons than one!

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Miggy:  Kera, thank you so much for sharing your family with us today. So wow--you've got 3 children who all have varying forms of special needs! Like you said in your email, you've got your hands full.  Can you give us a glimpse of what it has been like to discover each of your child's special needs and how you've coped with the realization each time?

Kera:  I’ll start with Julianna, my oldest. She was born on her due date, Dec. 6th.  The first words I heard from the doctor were, “She’s a redhead!” She was beautiful, and was placed on oxygen for about 9 hours due to meconium at birth.  I began to notice little things when she was a baby—she liked to wiggle her feet and hands a lot, and stiffened her legs spontaneously.  Then she began shaking her head and flapping her arms.  She didn’t smile as often as she should but started talking at 10 months.  I tried not to worry, but when she didn’t crawl until almost a year old, and wasn’t walking by 18 months, her pediatrician referred us for physical therapy and early intervention services.  Also, a neighbor who was a speech therapist knocked on my door one day and said, “I think your child has autism.”  I had a good cry with her, and then a good cry as I held my little baby girl, and then did tons of research.  In my heart I didn’t think she had autism, and over the years we have discovered that she just has traits, not full autism.  But this was the beginning of trying to find answers for her.  I wouldn’t say there was one single discovery, but many as I have taken her to different doctors and had her evaluated by different specialists.  It has been a journey, and continues to be one.  I think time has made things easier, though I still have many moments where I feel like I just can’t cope with the reality of her needs and wonder how far she will go.

Blake, my second child, was born at a healthy 8 pounds 15 ounces, and again the doctor announced another readhead!  He was born almost 3 years after Julianna, November 16th. We noticed at birth that he had two small spots on his abdomen that looked like birthmarks.  The doctors didn’t think anything of it, so we took him home, happy to have a new baby boy.   It wasn’t a few days before the strange symptoms appeared… his entire body would flush and turn red as a tomato, and he would scream and wriggle and cry like he was in pain, a few times a day. He then started to blister on the spots and some others that we found on his head.  We took him in to the pediatrician right away and they thought it was impetigo, and prescribed some cream. When that didn’t work, and the symptoms persisted, they referred us to a dermatologist. Fortunately we were able to get him in the next day instead of 4 months later, which proved to be a blessing after we found out his diagnosis.  The dermatologist took one look at him and said, he has mastocytosis, (http://www.mastokids.org/) a disorder where there are too many mast cells in the blood which contain histamines that release into the skin and cause spots, flushing, and blisters.  They prescribed an epi-pen because these flushing episodes can sometimes cause a baby to go into anaphylactic shock and possibly die!  They even said that we were so lucky he was seen that day, because his particular case was on the extreme side, and there was a possibility that he could have had serious complications had we waited just 4 months.  He was given an antihistamine to control his levels.  His symptoms persisted until he was about 2 years old, where he continued to develop more spots, mostly on his torso, but the spots will fade and disappear by the time he reaches adolescence, we are told.  Needless to say his first two years were filled with scary moments and lots of doctor visits.

Nathan, my little baby boy, was born on December 5th,  one day before his big sister’s 9th birthday, and one ounce heavier than his big brother, and again, another redhead!  When I tried to nurse him, he didn’t seem to want to latch on and was making a strange clicking sound.  The nurses noticed he was having a lot of mucus discharge from his nose and mouth, so they went to suction him, and when our baby didn’t come back after an hour, I began to get nervous.  Soon we saw three nurses come into the room and tell us that Nathan had a bilateral cleft palate (http://www.cleftline.org/parents-individuals/).  My heart sank!  We had prayed so hard to have a healthy, normal baby, and waited a good while before we had another one!  We were soon visited by many doctors and specialists.  In the hospital a whole team worked with me to see if we could get him to nurse, but were unsuccessful.  So they sent me home with a hospital grade pump, special Mead Johnson bottles, and syringes, tubes, and pacifiers.  My number one concern was: how is my baby going to eat and gain weight?  His first few months proved very challenging as I learned how to feed him and decided to pump exclusively as well, and took him to see many doctors and specialists.  He may need speech therapy, special dental/orthodontic care, and continues to be seen by many specialists each month. He had surgery to repair the palate almost two months ago (which I will talk more about) and is improving.



Miggy:  I've had to admit that from time to time I've worried about having additional children with different special needs.  Of course I know that in the long run everything would be fine and love would prevail, but it's still a worry.  What would you say to a mother who discovers she too will have more than one child with special needs?

Kera:  To be honest, it is really, really hard!  I don’t think anyone can understand how hard it is and this causes me to feel alone quite often, but thanks to a wonderful husband, family, and friends, I always have a listening ear when I am struggling.  With my oldest, I went through a denial period when she was 2-3 years old.  I didn’t want to think anything was wrong with her.  I even terminated services that I already secured through the local regional center because I wanted to believe she was fine.  A year later, when I realized she really wasn’t okay, I wanted that help back. (It took me 4 years to get it.  Every service I had tried to get for her has been a battle to the end, but she’s my daughter, and I will do anything to help her.)  I was in the end of that denial period with Julianna when Blake was born, dealing with his flushing and blistering which was very challenging and draining.  Once Blake’s symptoms improved two years later, I was worn out!  So we waited a while to discover if/when we were supposed to have another child.  We wanted to be at the right place.  Exactly 9 years to the day after I found out I was expecting Julianna, I discovered I was pregnant with Nathan. We prayed and prayed that this baby would be okay.  So when Nathan was born, I was floored to find out he had something, too.  I thought there was no way we would be given another special child.  What really helped me cope was that Julianna’s services through the regional center and school were all in place.  I didn’t have to worry much about her anymore—I had finally gotten her everything she needed, literally weeks before I gave birth to Nathan, and Blake was in school all day.  So when Nathan’s doctor visits piled up, and I had to figure out how to feed him, I wasn’t as stressed, because my kids were older and in a better place.  I knew I could handle this new little baby and give him the care he needed.  I truly feel like we have been guided in every decision and challenge we have had with our kids because we have been prayerful and faithful.  And interestingly, Nathan is almost an answer to prayer concerning Julianna, because of his Chromosome 22 duplication. We have been told that this duplication can cause different symptoms in another sibling of the same family, and we are in the process of having Julianna tested for the same duplication.  Nathan could be our answer to where Julianna’s issues come from!  If this is true, any more children we conceive would have a 50% chance of inheriting the same duplication, though it does not always cause any symptoms. We will find out soon. Geneticists are fascinated by our family.


Miggy:  How do your children's needs affect your day-to-day life?  

Kera:  With Julianna, she needs help dressing, bathing, and grooming, and little things can set her off into a major tantrum.  She hates change and still struggles socially.  But I treat her just like any other child—she is in a regular classroom with a 1:1 aide and doing great.  I have the same expectations for her as I do with her brother.  She just needs a little extra help in some areas, and I am always working on improving those areas for her.  Blake’s needs are not as extreme as they were when he was a baby.  His spots are still there, but I don’t even notice it anymore!  Nathan’s needs were challenging as a younger baby, as I learned to feed him using a special bottle and have been monitored closely by doctors on his weight and development.  Sometimes I am gone the entire school day to take him to specialists.  It’s amazing how many doctors work with this little guy!  And I thought my daughter had a lot!  Like all mothers, my children seem to run my life, but that’s the sacrifice we make to care for them. It’s draining and frustrating at times, but I don’t give up!


Miggy:  What are the biggest worries you face for your children?

Kera:  Oh, you had to go and ask that, did you??  Well, who doesn’t worry about their kids, special needs or not?  With Julianna, of course I worry what her potential is, and am I doing enough to help her reach her potential?  Or, am I doing too much?  Will she ever marry and have children, and be able to live on her own (she already talks about this and believes she will).  But will she actually do this?  This is the biggest thing I worry about, because in her little heart, she thinks she can and will do everything like a normal child and someday adult, but when I watch her, I know that there’s just something missing that makes me wonder if she really can achieve those things.  So then I go back to the, am I doing enough?  It’s a vicious cycle.  All I can do is take one day at a time, teach her one new skill at a time, and continue checking off that list until I am confident she can.  And of course I worry about what the middle/high school years will be like for her.  Will she have friends who will watch out for her and really show they care, because she cares so much for others?  I just want people to treat her like everyone else and for her to feel loved and accepted.

With Blake, my only worry is that he will be made fun of because of his “spots.” You really can’t see them unless he’s swimming, and even then he wears a shirt to protect him from the sun. Because they don’t fade until adolescence, there could be some challenging situations ahead for him.  But since he was little, and started asking what the spots were, I always told him, those spots make you special. And to this day, he still believes that.  I even caught him telling Julianna this a few months ago when she asked him why he had spots.  Otherwise he is a great kid, and a little too smart for his own good.

And with Nathan, my current worry is over a fistula, or small hole that formed after his surgery because the palate did not heal properly.  His surgeon has never seen it after one of his surgeries, but often corrects them after other kids develop one from a different surgeon.  So my little Nathan broke his surgeon’s perfect surgery record!  They do think the hole will close up on its own, so we are just hoping and praying it will; otherwise he will have another surgery.  His surgery was VERY difficult because he had a wide cleft, and the recovery was horrible.  I almost took him back to the hospital a few times because I worried he wasn’t eating enough, but we got through it and he is doing much better.  Because he has the microduplication of chromosome 22, doctors are watching him closely to make sure he develops normally.  So far he is ahead on all his milestones, is very social, and starting to say some words, but this duplication can cause delays in many areas, and also heart and kidney problems, so he will need an echocardiogram and ultrasound very soon to rule out any problems there.  And of course I worry that his speech will be affected by the cleft palate.  It is just a wait and see right now for him.  He is very tiny, in the 1st percentile for his weight, so I am trying to fatten him up now that he can eat like a normal baby!


Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Kera:  I wish I could be more like you, Miggy!  I need to be better at seeing the humor in things.  But of course there have been some instances… one that stands out is Julianna’s current “phrase” she repeats.  Not sure if her repetitive phrases come from the Tourrette’s or autism traits, but she usually has certain phrases she repeats when she is mad, sad, frustrated, etc.  But right now she says, “I love you!”  What a nice thing to hear from your special daughter, right?  Well, try hearing it every single time she is done telling you something.  For example, “Mommy, can I have some yogurt?”  Me, “Yes.”  Julianna, “I love you.”  She inserts those three words after everything she says to every person in the house.  And most of the time she even says it just because!  And if you don’t answer her, she will keep saying it until you do.  Talk about annoying to her little brother!  I never thought I would have to tell my child to STOP saying, “I love you.” It has become so frequent that my husband has even started saying she needs to stop! I just have to laugh about this one.


Miggy: How can people best approach or respond to your children or your family as a whole? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Kera:  On the outside, my children look very normal, and for the most part, they are well behaved in public.  But of course there are times when they are not, especially Julianna, and I have gotten stares and eyes rolled in my direction, and audible gasps, and even one time in Wal-Mart after an episode by my daughter while standing in line, I looked right at the people in front of me and said, “She has autism, OKAY???”  I was stressed and embarrassed, but mostly hurt because people need to be more understanding.  My daughter looks normal but then behaves like a much younger child sometimes and people assume I am a bad parent, when this is entirely not true.  I don’t want my kids to go around with a big label to explain their needs, because really, what I want is for them to be treated just like anyone else in the world, with respect and understanding.  This is a big reason why I keep my daughter in a regular classroom with an aide—I want her to learn from regular kids and model their behaviors, dreams, and goals.  She is making so much progress this way.  And for the most part, people don’t treat her any differently at school.  Having special children has made me much more understanding of other families in the same situation—if I ever observe a scene while I am in public, I just smile to myself because I know what they are going through!


Miggy:  Some people might feel singled out or 'why me?' about having 3 children who all have special needs, yet one thing that impressed me in your email was when you said, "...the best part is they all have red hair. We are so blessed!" I would love to hear why you feel so blessed and what you want others to know who may wonder why you feel that way.

Kera:  When my baby was born, I definitely felt the “why me” come crashing down for a little while. But then I started to think how honored I was to have such unique children who are each teaching me about tolerance, acceptance, and patience.  I have been to almost every specialist out there, and a person on the new team of doctors for Nathan even remarked, “You could almost have a medical degree by now with what you have been through with your kids!”  I was chosen to be their mom, not anyone else, which means I have the capability to care for them in the way they need to be cared for.  And these three kids are strikingly beautiful!  Almost every day I ask myself how I got such beautiful redheaded children.  They are special because they are mine, and I don’t even see their needs anymore.  I see them for who they really are.


Miggy:  What's the biggest lesson you've learned since becoming a special needs mom?

Kera:  This has to be the hardest question of all.  Wow.  Maybe that many things are out of my control, and that’s okay.  In my own personal life, I like things to be controlled, planned out, and predictable.  But with my kids, everything is up in the air, unpredictable.  I can’t control my daughter when she’s having a major tantrum, but I can control how I react.  This is something I am still struggling with.  I get angry and frustrated, often, when she has these episodes and there is nothing I can to do help her! I don’t know when Blake’s spots will disappear.  I don’t know how my baby’s speech will develop, or if he has any other delays that I don’t about yet.  So what I need to do is just let all these unknowns go and focus on one day at a time, being a better mom each day. That’s about all I can control, is what kind of mom I am to my kids.  So I will continue to learn this lesson throughout my life!

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Yes Kera, I do think you've earned an honorary medical degree!  Thank you so much for sharing your beautiful children with us today.  First, I'm glad you said that honestly, it's been really hard.  I'm sure it has been hard and for other families who may find themselves in a similar situation, it doesn't really help to sugar coat.  That being said, I'm also glad to hear about the positive things you've been able to focus on, because that's true too!  And I love when you said, "I was chosen to be their mom...which means I have the capability to care for them in the way they need to be cared for."  So, so true and I'm glad you remind yourself of that.  Thanks again and please give those adorable kiddos squeezes from me.  

If you or anyone you know would like to participate in the special needs spotlight please email me, or have your friend/family member email me directly, at thislittlemiggy at gmail dot com.  

Have a great weekend!  

15 comments:

  1. Hi Miggy! I love your blog and the new format looks awesome. One thing though- the font on this post is super difficult to read. Do you think you could change it to something else? Thanks!

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  2. Robin--Yes! Totally agree...have already talked to my designer about it. I'm glad I'm not the only one...thanks for the feedback.

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  3. Hi Miggy, I ditto Robin's comment, the main body text font is really hard to read. But the redesign is beautiful!!!

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  4. Miggy, the post looks great! I hope it wasn't too long. I tried to keep it short talking about 3 kids! Thanks again for the opportunity! I have lots of friends with special needs kids, too. I'll have to spread the word.

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    1. Thank you for sharing the story of your children. I love all of these spotlights but yours has got to be one of my very favorites! I appreciate your honesty about how it can be really hard sometimes but what a great perspective you have about it all. Here's a virtual ((hug)) from one special-needs mama to another.

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    2. Thanks so much, Heidi! I really appreciate your kind words. It's interesting hearing from people I don't know, because it makes me realize that maybe I am doing something right!

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    3. Kera--it was great--in length and content. I really loved hearing your perspective, the good and the bad...and it seems like a lot of other people did as well. Thanks again!

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  5. Gosh I love these interviews. About this one in particular, I noticed the honesty. Kera was so honest about the tough- it makes it so you really believe her when she says she feels blessed and that she sees her children without their needs. It's strikingly brave, I think. And I'm glad she says she has a good husband and family and support system because I'm sure it can be so hard sometimes!
    Thanks Kera- hang in there- you are inspiring (and I don't say that lightly).

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    1. Thanks so much, Kayli! I appreciate your thoughtful words. I never really thought of myself as inspiring, thank you! Just doing what I need to do for my kids.

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  6. Love the site, think it looks great! But just chiming in, it's super hard to read with that font.

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    1. Agreed! Will fix that soon. Thanks for the feedback.

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  7. Anonymous2:11 PM

    Hi! I just wanted to say that I love reading your blog. The new font hurts my eyes though.

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  8. As a friend of Kera's, I just want to say how proud I am of the wife, mother, and woman she is. She has always been a strong and capable person. Her children and husband are so lucky to have her. Her honest spirit comes across in her great writing. I'm planning to share it with others who can benefit. Thanks for interviewing her.

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  9. Wow! She is amazing. Having one special needs kiddo is exhausting for me at times, and she does it with 3! And she has a super cute family picture.....I can't seem to keep my buns in gear and get one of our family! Keep up the good work with those cute kids.

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