Tracking Rare Incidences Syndromes

For those of you that have children with a rare Trisomy (13, 18, 9, 14, 8, 16 etc).  Southern Illinois University does an annual survey tracking the children in an effort to provide information to parents.  They put together the results annually as well. 

If you are unfamiliar with them and haven't participated in the survey, I encourage you to do so as the more information from families the better.  I just did the update to the annual survey and it took me less than 10 minutes to complete.

For more information you can go to their website: http://www.coehs.siu.edu/tris/

Half Way Through HBOT!

We are officially into our last half of hyperbaric oxygen therapy treatments!  Finn has been doing such a great job although he will not tolerate the oxygen tube up his nose.  He is still getting benefits even without the tube. 

I cannot wait until the treatments are over.  It has been a challenging four weeks of picking Finn up from school early and dropping him off at Dan's work and then Dan takes him down to St Pete every night.  Driving back from St. Pete in rush hour traffic can take more than two hours - yuck!  I hate keeping the little guy cooped up for 4-5 hours a day but I think we have already seen some benefits!

For example, this morning Finn woke up, came down the stairs on his own and asked me to "eat" by both signing and verbalizing!  This is only the second time (the first time was last week) that Finn has actually
requested to eat. 

He has also said at least 13 new words in the past 3 weeks.  That is about a 20% increase in spontaneous words.  He has been telling me before he goes "poo poo" even though I still can't get him to on the potty.  He also acknowledges he is wet when I change him.

He has lots of self help skills at school and one of them is feeding.  He is making huge progress in feeding himself.  He fed himself a bowl of applesauce with a spoon with no help and managed to keep his shirt clean!  


The other huge thing is I told Finn that we could go outside if he could find his missing shoe.  He ran upstairs, ran down the hall to the playroom, and ran back to the top of the stairs smiling carrying his shoe!  So proud of him!  


In addition, soccer went much better this past Saturday.  He actually stayed on the field for his alotted time in the first half.  The coach helped tremendously and Finn even kicked the ball twice and clapped for his team!  He did make it down to the playground the second half and had no desire to go on the field, but what an improvement over the previous week!!!

So, I cannot say for sure that the HBOT treatments caused the positive results above, but they definitely are not hurting.  If we continue to see improvements, we will most likely buy an oxygen chamber for home.  The treatments he is receiving are free via Chamber of Hope.

Finn's #47 below :)

Walking

I love watching Finn and Camila play together.  Last night they were running around the house, hiding behind the drapes, laughing, screaming, holding hands dancing.  Simple pleasures of parenthood. 

A little more than a year ago, I didn't know who would walk first: Finn or Camila.  Finn didn't start walking long distances (more than 10-15 steps at a time) until about this time last year, but he didn't just start walking at 2 years and 4 months, he started running too. 

Finn is such a boy, we know he had been dying to run around outside and push his lawn mower, chase after birds and run from bugs.  He was able to climb from a young age, but Finn has a very cautious personality.  He is not a risk taker (well, wasn't until Camila came along). 

When Finn turned 2, he started walking a few steps between two people.  I asked his therapist if I can say he is walking now?  She said, I could say he is walking "short distances."  I repeatedly asked her when he would start walking all of the time.

Getting Finn to walk was not easy.  Its something we worked on every day.  Finn had a gait trainer that he wouldn't walk in.   We tried different orthotics and different shoes.  We used highly desirable objects aka cookies to try and coerce him over.  Nothing seemed to work.

Looking back, I think walking is just something you can't rush your child into doing.  Finn has low muscle tone and his joints are very loose and flexible.  He has multiple problems with his feet.  I was constantly worried that he would dislocate a hip or a knee.  Finn walked when he was physically and mentally ready.  

I do have a few tips that may help:

• Try getting your child involved in swimming.  We saw a huge confidence boost in Finn after he started swim lessons.  In addition, it got his body moving in a way it had never moved before.
• Try walking wings to help get your child in the right posture and help you as a parent with your back. We bought a pair on amazon.
• Try having them walk without the boxy shoes that fit over orthotics and maybe not using orthotics all together at first will help.  Some of those orthotics are so constraining and don't allow the ankle to be as flexible and mobile as it needs to be.  In some ways, I think orthotics do more harm than good through the crawling/walking phase but every child is different.  You can also ask if it would be ok to add hinges to them to allow for more flexibility. 
• My other words of advice are simply to hang in there and be patient.  If your child will be ambulatory, he or she will do it when he or she is ready and then you have a whole new set of problems :) 

Dan and I often talk about how we got to experience the joys of the "baby" phase a little longer than most parents.  I love that Finn liked to be held and babied for so long and I'm so happy with how far he has come, I do miss that phase!   

Finn walking up and through and down an airplane on his own :)

Finn and Soccer

So, we signed Finn up for co-ed soccer for three and four year old's.  We have a few friends with children on the same team and we thought it would be a great idea to introduce Finn to a team sport.  He had his first practice and game last Saturday.  I was exhausted in the first few minutes and in tears before long.

Finn is easily distracted.  Actually more than easily distracted.  He enjoys being around other kids and he is typically more interested in what they are doing than anything else.  On top of that, he is a wanderer.

Practice went ok.  Either Dan or I hung stayed by Finn's side and kept him with his team.  He kicked the ball a few times, but was mostly interested in holding hands with the other teammates.  This was all expected.

Then came time for the game.  Keeping Finn on the bench when it was not his turn to play was a challenge.  Especially, since we had Camila, our 15 month old, with us as well.  One of us was chasing Camila and one of us was holding Finn on the bench.  Then it was Finn's time to get in the game.  He immediately ran off the field and headed for the playground.  We took turns picking him up and putting him back on the field, but at this point, I think we were both exhausted and told the coach to put someone else in.

Finn really wanted to go to the playground and even though he "should have" stayed with his team while they were still playing the game, sometimes you just can't physically or emotionally make him do what he "should" be doing especially when you are already feel like you ran a marathon.  So Finn got to swing while the others continued the game.  Dan brought him back in time for the very end and he was so excited to get a juice box!!!  

It was clear to me that signing him up for soccer was a bad idea.  I tried to keep the tears in as I watched the other kids running around and talking to one another.  When we got home, Dan said he was really glad we signed Finn up.  I was actually surprised to hear him say this.  I was glad he said it because even if Finn never actually plays soccer, he is learning, he is being exposed to the sport, and he is playing with the other kids.  Then to confirm it was the right decision, Finn pointed to his jersey yesterday and was adamant about wearing it to school and then he brought me the soccer ball and we kicked it around for a bit.  These are the joys of being a parent of a child with special needs especially considering Finn just learned to "kick" this year.

We hadn't really told his coach anything about Finn before it started other than when I signed him up I wrote that he has developmental delays.  Dan let the coach know and the coach wanted to get Finn involved as much as Finn wants to be involved.  So, this Saturday, I have a feeling Finn will be doing lots of penalty kicks and throwing in the ball when it goes out of bounds.

Picture Exchange Communication System (PECS)

I first heard "PECS" from a colleague at work.  Her son was learning PECS at the Florida Autism Center of Excellence.  After she gave me the Cliff Notes version of PECS, I was convinced this was another method of expressive communication we could teach Finn.  I am surprised at how many parents of non-verbal children are unfamiliar with PECS.  It is such a great tool.


PECS is a great way for kids who are non-verbal or having trouble with verbal expressive communication to tell you what they want.  In its basic terms, the kids (or adults) use a picture to tell you what they want.  If your child is in school, you may want to discuss this with his/her teacher and have PECS included on his/her IEP.  PECS is commonly used in the ASD classes, but not as commonly in the VE classes.

Teaching PECS; however, is not as easy as it appears.  There is a standardized set of pictures.  You can purchase these on-line and print them or you can see if a therapist or teacher can print them off for you.



You start slow with really only one picture at a time.  In fact, at the beginning, it doesn't even matter if the picture is the object you are practicing with.  Phase 1 is basically teaching your child that if he/she uses the picture card, he/she will receive an item in return.  When you first start, you want to use items that he/she really wants.  We used cookies, train, olives, and bananas with Finn.  Food is usually a good place to start.

Then once your child understands the concept, you can then practice putting the picture in a binder and having the child go to the binder to grab the picture and hand it to you.  Again, using the correct picture at this point is not important, what is important is that your child understands that he/she needs to go get the picture and hand it to you.

Next, you begin teaching your child the pictures.  This can be a long process and it is never ending.  Once your child has mastered a picture, you can place it in his/her binder.



Eventually what will happen is your child will place pictures in a row to tell you what he/she wants.  He or she will "say" a sentence.  Each sentence begins with the "I want" picture.  Then it can get descriptive from there... "I want" "red" "car."



Finn has been using PECS quite successfully for the past few months.  He uses them when he doesn't know how to sign the word or how to say it.  It helps us as parents know what he wants when we are otherwise guessing.  We are still on stage 3 and not making sentences yet, but I'm sure that is in his future.

The great thing about PECS is that unlike sign language, most everyone can understand a picture with the written word on it.  Eventually, Finn will have a piece of techonology that will store all of the pictures so he doesn't have to carry around a binder wit hhim.  In addition, PECS is a pathway to verbal communication because you are reinforcing the sound of the word each time a picture is handed to you.

Please go to http://www.pecsusa.com/ to learn more.  They also have information on workshops and training.  You can purchase the software and binders there too are you can buy them on amazon as well.

I also have the PECS page link on my home page. 

Blue Painters Tape

Finn is a curious boy and a wanderer.  His teachers have trouble keeping him in the classroom, at an activity, and off of tables.  Then, they came up with a solution: blue painters tape.  They made outlines of boundaries for each station and at the classroom door.  At our last parent-teacher conference, we witnesses first hand that it works.  Finn was on his tippy-toes peaking around the corner outside the classroom door, but his toes never crossed that blue tape.  I think I am going to implement this tape inside our home.  I'm hoping this comes in handy, especially around the witching hour otherwise known as dinner time. 

I stumbled up on this article today written by a therapist at Independent Living.  http://www.independentlivinginc.com/its-more-than-just-painting/

What great ideas!

1. Use it as a boundary to improve body awareness. For example, if your child crosses the line you’ve made on the floor, you say “What part of your body crossed the line? Is it your right or left leg? Put it back behind the line…”
   
2. Make a hopscotch or ladder type design (1 foot per square) on the floor and instruct your child to hop on one foot to (the first, middle, last) square. Or have them stand backwards and jump to a specific square, they can also side step across the ladder.
   
3. Use the hopscotch or ladder frame, except this time have your child toss bean bags into the squares. Assign each square a different point value by taping the number into the center of the square.
   
4. Make a small square on the ground as a “fence” and using a straw, blow cotton balls into the square to “herd the sheep.”
   
5. If your child is clumsy, put a small piece of tape at the eye level of child on the wall, door, doorframe, etc… that the child runs into. Or put small pieces on the corners of coffee tables, desks, etc… The visual cue may help give the child feedback to move before bumping!
   
6. Work on balance and walking in a straight line by taping a 6 foot strip to the floor. Have your child walk on the line (like a balance beam).
   
7. Use as a marker to mark off goals for forward jumping. Place a few 6 inch strips on the floor and encourage your child to jump over/past the line. Gradually increase the distance and play “Let’s see how far you can jump!” game each day.
   
8. Use it as a visual reminder to stay in a designated area for safety and/or to improve participation during games/play. Tape an “X” or your child’s letter, “K” for Katie, on the floor. Encourage your child to “STAY on your spot/letter” when playing a game on the floor, doing homework, helping in the kitchen…etc.

These great ideas are all ways to help improve sensory awareness, walking, balance, jumping distance, attention and behavior all while having lots of FUN!!!

Learning Sign Language

Finn communicates with us in many ways.  Most often it is gestures or dragging me and pointing to what he wants.  Finn also signs - he probably knows about 100 signs, he uses some words, and we are also learning PECS (the picture exchange communication system).  People often ask me how I learn the sign language I teach Finn.  I have learned sign language 4 ways:

1) Therapists
2) The Deaf/Hard of Hearing Teacher from the school system
3) Baby Signing Time
4) Looking up words on the American Sign Language Website

I often see free sign language class information on therapists bulletin boards, but I have not personally attended any of them.  If you are looking for a class, I would recommend asking you therapist.  If I hear of an upcoming class, I will make sure to post it in the events page.

I am probably the most anti-TV person I know.  We have on TV only and it is upstairs in our "media room."  The kids are pretty much only allowed to watch Sesame Street, Thomas the Train, and Baby Signing Time videos.  I can't say enough good things about the baby signing time videos.  We got these fairly early on and even when Finn wasn't interested in them, I learned a lot of the basics.  They have catchy songs and are really easy to follow.  Finn and Camila both loves these 20 minute videos.  I love watching the kids sign along to the videos.   The website for the Signing Time Videos is http://www.signingtime.com

Keep in mind that if your child has any type of hearing loss he or she may be eligible to have a deaf/hard of hearing teacher come to your house from the school system.  This is separate from Early Steps, but talk to your Early Steps coordinator about it or don't hesitate to call the school system.  If your child is over three, he or she should get this service at the school he or she attends.  Make sure deaf/hard of hearing is on his or her IEP so he or she qualifies for these services. 

We had a really good deaf/hard of hearing teacher come to our house.  The biggest thing that sets this individual apart from the speech therapist is that they are educators.  She did not teach Finn "baby" signs, she taught him the correct sign which I think is so important so we don't have to reteach him the correct sign.  Even though he doesn't have the fine motor skills to do the sign perfectly, we understand what he is trying to say and eventually he will be able to do it correctly.  Just think of your child saying "Melmo" instead of "Elmo" or "Pagetti" instead of "spaghetti."  Same concept.

I try and use the signs I know with the kids throughout the day and if I don't know something that I think they would like to be able to communicate I look it up on the American Sign Language dictionary.  I love this website because it shows someone actually doing the signs instead of you having to guess the movement from a picture.  http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi.  There are also a ton of applications for your phone that make accessing this info so easy.

Lastly, making a book is very helpful.  Take pictures of familiar items in your house and look up the sign on American Sign Language website.  Put the picture of the sign on one side of the page and the picture of the object on the other side.  Finn loves looking through this book and identifying objects that are familiar to him.  You can always add more pages and it is cheaper than buying a book on signing!

Here are some examples of pages from Finn's book:

Kids love signing because it involves movement.  Its fun for them and its a great way to get your child to communicate.  It is also a bridge to verbal communication. 

Forgiveness

This article came to me by way of a good friend that has a special needs child. 

Have you ever gotten "that look" from a stranger when your child was having a meltdown in aisle five of the grocery? Have you even been "dodged" by a friend to get together, have a play date or just talk on the phone? Have you ever received advice from a well meaning aunt about your child's behavior that felt like a slap in the face? While trying to understand the questions of "how" and "why" regarding a child's special need, parents and families of those with disabilities need to find a sense of balance, peace and forgiveness.

by Holly Olmsted-Hickey, One Place for Special Needs

Forgive...Who?

You might be surprised that the first person to forgive is yourself. Try and rid your mind and heart of feelings of anger, disappointment or sadness.  “You didn’t ask for this to happen in your life,” says clinical psychologist Aimee Koerner-Frank, PsyD. of Charlie’s Gift Autism Center in Downers Grove, Illinois. “Circumstances happen.  Life happens.” 

Dr. Koerner-Frank speaks from experience.  While she is a clinical psychologist working in the special needs community she is also a parent of a son with Down syndrome.  Forgiving yourself will not only make a difference in your child’s life, but it will make a significant difference in your own life, too. “Quality of life is important to a special needs family,” says Dr. Koerner-Frank. “Being the parent of a special needs child has made me a better person and a better therapist.” 

Forgive that stranger

“Can’t you control your child?” You’ve probably been there: in the store checkout line with a screaming child dealing with glaring looks from strangers.  When the feelings of anger can no longer be ignored, is it easier to simmer in silence or lash out at rude strangers? Or is it easier to turn the other cheek, forgive and let it go?  It probably depends on which warrior parent you are speaking to.  

Living under a cloud of anger or exploding by making a public scene does not enhance your quality of life.  Ask yourself, is yelling at other people for thoughtless transgressions really how you want to live your life? The healthier approach is to forgive ignorant comments and let it go. Vent your feelings with a trusted family member or friend. Post the incident on a special needs group site with an understanding audience. 

“Life is too short to make a big deal out of it,” chimes in special needs parent Camille Gaughan of Carmel, Indiana.  “…and karma happens.”   When it comes into conversation, Gaughan explains her 11-year-old daughter’s mitochondrial disease in a very matter-of-fact way. Similar to muscular dystrophy, her daughter’s disease leaves her unable to convert nutrients into energy resulting in her inability to balance, walk or talk.  From her wheelchair she is able to communicate well with sign language and through a picture exchange system.  

Forgive your friend

”Something’s come up.” It is hard to see relationships change.  Someone who was once a close friend can drift away for many reasons.  Feeling dismissed or “dodged” by a friend brings on feelings of sadness, anger, and hurtfulness.  Trying to put yourself in your friend’s shoes might help.  For whatever reasons, your friend might feel he or she cannot support you emotionally.  

They may not understand your feelings of helplessness or hopelessness or feel overwhelmed by them. “I find it easier to forgive,” says special needs mom Susan Black of Columbus, Ohio, parent to a 10-year-old son with Down Syndrome.  “I have become a very non-judgmental person and wish others were more that way.  No one can truly understand the difficulties that a special needs child can add to your family unless they have a special needs child themselves,” she says. “I do not hold it against them and some day they may have an experience that will allow them to understand more fully and be more accepting,”

Forgive your family

Like some friends, there are a lot of close well-meaning and loving people in your life that won’t understand what you are going through.  Family members might try to soften the edges you feel by saying things like, “It’ll be okay,” or “Your brother did that, too, and he’s perfectly fine.”  

Statements like that may sound incredibly patronizing at the wrong moment, but know that your family is there for you.  Trying to normalize the situation is what people try to do when there seems to be an imbalance. Like friends, they cannot take away what is going on in your life, but they can listen to your life and times as they play out. Rather than feel resentment, use this time to gently educate and help them understand your world.

In some extended families, a relative may only offer harsh judgment and animosity. Every family gathering is filled with hostility and resentment. Katherine, a recovery counselor in Chillicothe, Ohio, helps people learn to forgive others “whether or not the offenders deserved to be forgiven.” 

“Resentment hurts the resenter far more than it hurts the offender,” she said. “Grudges are cancers in our souls. Forgiveness isn’t a gift we give to others, but a gift we give ourselves.” Katherine and others offer their own stories on forgiving family members in this Dear Abby column.

Does forgiving yourself or others mean you are giving in to the disability?  Parents and professionals both agree: absolutely not. To the contrary, forgiveness allows you to live a happier life without resentment and anger.  

“Forgiveness is not forgetting like it never happened, but rather letting go of the malice and anger that is poisoning the individual,” says the V. Rev. Dr. Steven C. Salaris, M. Div., Ph.D. of All Saints of North American Orthodox Christian Church outside of St. Louis, Missouri. “Forgiveness is not giving in but accepting the reality and actually taking control.”

What is the answer to the question of forgiveness?  It lies in the gift you give yourself for a better quality of life for you, your children and your family and friends.

More reading

Coping with stress - Articles on handling the daily stress of being special needs family
Taking care of yourself - Articles on taking care of you

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About the writer

Holly Olmsted-Hickey is the married mom of two boys, an autistic spectrum teenager and a typically developing six-year-old, each with their own gifts and challenges.  She is the Development Manager for One Place for Special Needs and, in her spare time, the leader of The Windy City Chicagoland Apraxia Network and blogger/writer at waitingroomtherapy.wordpress.com.  She drinks a lot of coffee, plays softball to relieve stress and enjoys an occasional nap. Reprint permission granted if you include: Reprinted with permission from One Place for Special Needs http://www.oneplaceforspecialneeds.com

http://www.oneplaceforspecialneeds.com/main/library_forgiveness.html

A Good Week for Finn

This week has been a great week for Finn.  Finn said two new words spontaneously - "friend" and "don't."  This may not sound like a big deal to a lot of parents, but we really celebrate these moments.  We are lucky if we hear one new "spontaneous" word a month so two in the same week is huge!

UPDATE - FINN SAID 5 NEW WORDS IN ONE WEEK!!!  - "FRIEND," "DON'T," "BUDDY," "HEART," AND "BOX."  ALL SPONTANEOUS!!!

In addition, Finn actually walked with me from the school to the car 3 days this week without me having to chase him.  This is a safety skill we have been working on and most days I am exhausted by the time I get to the car from the school entrance.  It seems silly to me to go through all of the trouble of getting the double stroller in the trunk, pulling it out of the trunk, walking it 50 feet to the school entrance, struggling to get it through the door and then repeat to the car when I have two children that are capable of walking that distance.

When I have tried having them walk holding my hands in the past, I usually end up carrying one of them on each hip and then I throw Camila in the carseat and shut the door while I straddle Finn with my legs so he can't run wild and then I run over and buckle Finn in his carseat and then back to the other side to buckle Camila in.  Seems like a lot of work!  So, it is nothing short of a miracle that Finn walked right by my side to the car and stayed at my side while I buckled Camila in.

He is tolerating the HBOT treatments very well.  I think he likes going and getting some one on one time with daddy.  They have a large dog that hangs out at the facility.  Finn and Camila both love dogs, but Finn has always been more of a dog lover from afar and he gets very nervous as the dogs get closer whereas Camila will pull ears, tails, and whatever she can grab while giggling like crazy.  Finn apparently feels very comfortable with this dog and will go right up to him and pet him and he loves holding on to his leash.

Lastly, his teacher called me and we made changes to his IEP this week with the goal to get more one on one services for Finn to really work on PECS and signing.  He gets one on one speech, physical therapy, deaf/hard of hearing, and occupational therapy every week, but he could use more just like most of the kids in his class.  I hope we are able to get Finn some more individualized support in the class room.

Achievable Community Interaction Therapy

I was introduced to Achievable Community Interaction Therapy at the last Sunshine Sunday held at the Glazer Children's Museum in Tampa. 

Achievable Community Interaction Therapy teaches classes including dance, baseball, yoga, bowing  gymnastics, handwriting, Tae Kwon Do, and basketball.  The classes are limited in size and are run by occupational therapists.   The classes are held in the Land O' Lakes/Lutz area.

The goals, per the organization's website:

1. Create Community Camps with individuals with special needs (pair 4-6individuals based on age, diagnosis, and level of functioning together for participation in weekly personal, social and/or vocational skills).
2. Adapt and give individuals with special needs a chance to explore a variety of personal, social, and extra curricular activities at a level where they will achieve success.
3. Develop meaningful peer relationships.
4. Unite and empower families to successfully venture outside of their homes, schools, and therapy clinics so they can truly enjoy and embrace all of life’s possibilities (within the family and also family to family).
5. Provide individuals with special needs participation in personal, social, and vocational activities in the REAL environment (unlike traditional one-on-one therapies).

The Tae Kwon Do camp, for example, is a 1-hour long class for 8 weeks.  It is led by a Tae Kwon Do instructor in conjunction with experience occupational therapists.  Age limit for this class if 5 years and older. 

I will warn you that the classes do seem a bit pricey.  The Tae Kwon Do class is $500 for 8 sessions and the Gymnastics class is $355 for 4 sessions, but when you consider the cost of therapy, it isn't way out of line. 

There is a $20 coupon on their website when you register for two "camps."

For more information, please go to http://www.acitherapy.com

Where to Get Your Child's Bloodwork

Finn has to have blood work quite frequently.  It is not as frequent as in the past, but still frequently enough for any three year old!

We have been through it all with blood work.  Finn has been so inflamed with eczema that they couldn't find his veins.  We have had other situations where they tried both arms, both feet, and both hands.  That was enough to bring any mother to tears even when her child wasn't crying.  Finn has even had blood work done when he was put to sleep for surgery and they still had a tough time getting the blood out at the hospital.

Luckily for me - Finn doesn't seem to mind getting blood work done.  We originally thought his pain tolerance was astronomoically high, but turns out his brain processes pain differently or I should say is slow to process the pain so he rarely cries.

Most doctors have told us to go to All Children's or St. Joes where they deal with children all day long, but I got to tell you, we have had really bad experiences at both of those places -not to say they don't get it right most of the time.

We have had 100% positive experience at the Quest lab on Sheldon near Westchase.  Sure, they can be slow even if  you have an appointment and the lady at the front is not always super pleasant.  But when it comes to getting the blood on the first try and making the actual blood drawing experience as pleasant as possible - Aida is your woman.  She has never missed, never leaves bruises and is just a fun lady to deal with.  She could totally be Cheech and Chong's sister so don't let her exterior fool you.  She is kind and awesome.

You can make an appointment or just walk in to this location. Quest Diagnostics Website

I wish I could take credit for writing this, but I can't.

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Julie Keon
June 29th 2011

http://www.whatiwouldtellyou.com/

Early Intervention

The early intervention system in Florida is called Early Steps.  I have a love-hate relationship with them, but mostly love.  Early Steps serves infants and toddlers from birth to 36 months regardless of their family's income.  The child will be tested and must have significant delays or an established condition (i.e. cerebral palsy, a chromosome disorder, autism, etc.)  To be enrolled in Early Steps the child must be found eligible through a screening process.

We went through the screening process with Finn when he was about 7 months of age.  His pediatrician and audiologist recommended we get him tested.  It was Finn's first standardized test.  The two ladies testing him were so wonderful and most of the test was me answering questions and some of the test was through their observation.  At this point in time, Finn had not yet been given a formal diagnosis so he did not have an established condition so we really needed him to "fail" the test.  Being honest, he barely failed and those two sweet ladies really did help him get approved.  We were assigned an Early Steps coordinator - this is he person that meets with you once a year to twice a year and the person you call to help get other services.  You want to have a good relationship with this person.

You will come up with an IFSP (individualized family support plan) - this is much like an IEP.  Here you lay out goals.  It is nice to include the therapist in this meeting.

So, Finn qualified for physical therapy 1 hr a week.  This means, a licensed physical therapist came to his daycare once a week and Early Steps paid the cost after our insurance ran out. When Finn turned one, he also qualified for occupational therapy and speech therapy each for one hour a week.  When Finn was two he was also eligible for a behavioral therapist for hour every other week.   

We were very fortunate that we were able to obtain three and half hours of therapy a week through Early Steps.  In addition to the therapy, Early Steps helped pay for Finn's first set of orthotics and they will pay up to $1,500 for hearing aids, hearing aid evaluations, molds, etc.

We were very lucky that we pushed for all of the hours of therapy Finn received through this program and Early Steps delivered.  Most families are not that lucky and usually only get 1 hour of therapy/wk through Early Steps.  My suggestion here is to keep pushing and to make sure they understand all of the issues.  The only reason we got Finn speech therapy at one year of age is because we had a swallow study done to show that he does not chew and aspirated when swallowing liquids.  Find out if there are steps you can take like that to get additional therapy. 

So for the first three years, you will be dealing with Early Steps.  Early Steps is a wonderful government program, but it does come with flaws.  They are understaffed which means some Early Steps coordinators may have a hard time calling you back.  If this happens repeatedly, don't be afraid to ask for a new coordinator.  We had four different coordinators and we had two that would call back right away and do anything to get Finn the services he need and two others that didn't seem to put forth the effort.

Early Steps also has a parent liaison.  Use this person!  They are familiar with Early Steps ins and outs and can also provide you with different resources and emotional support.  There are family resource libraries that include books, cd's dvd's, toys, etc.  In addition, Early Steps has set up play-dates and it is a good way for you to meet other families. 

Early Steps will also help you transition to the school system when your child approaches three.  This is an important time in your life and your child's and it is critical to have a good relationship with the coordinator so that he or she can really help you with this transition.  For me it was difficult, there were school choices, what should be put in the IEP, what kind of class should Finn go into to, etc.

Early Steps and your child's therapists are going to be some of the most important people/programs your child will ever have as studies show early intervention is key to long-term success.

Contact Info: http://www.cms-kids.com/home/contact/earlysteps.pdf

Additional info about Early Steps: http://www.cms-kids.com/families/early_steps/early_steps.html

Chamber of Hope Day 1 and Genetics Appointment

Today was a busy day.  Finn caught the bus for school this morning, I took Camila to swim lessons, got home, fed Camila lunch, got her down for a nap, and left to check Finn out of school from school to make the trip down to All Children's Genetics in St. Petersburg and follow the doctor apt with his first Hyberbaric Oxygen Therapy treatment.

For the genetics appointment, my husband, Finn and I came prepared as possible.  We arrived to find out that the research we printed off on treating genes with gene therapy and stem cells is meaningless for Finn's syndrome(s). 

We were informed that genetic syndromes like Downs Syndrome is relatively easy to occur and Finn's situation is different and very "hard" to happen - referring to what every random event occurred when the embryo we now call Finn was formed.  Finn is one in 8 billion.  His future is not predictable and some times I do have to pull myself back into reality that unpredictability is not so bad.  Even typical children have unpredictable futures.

I will say I did like this new genetics doctor and counselor because they were blunt.  They told us like it is and it was hard to hear, but really, there isn't any gene therapy that can be done for Finn's issue rights now at least nothing in the United States.  Many of the reports written overseas are not factual and are not subject to scrutiny like they are in the U.S.

I was near tears the whole meeting because I thought I had come so prepared and was going to prove that there are solutions out there if I can get someone to take an interest. It was a tough pill to swallow, but I did leave the geneticist's office for the first time feeling like they are worth our time and money. 

From that appointment we rushed over to Chamber of Hope.  We got there a little late, but the volunteers and founder were so friendly and helped get Finn and Dan into the "space shuttle" right away.  Finn was very scared and cried at first, but after the chamber inflated, he was fine and he spent the next 45 minutes reading, playing trains, and snuggling with his daddy.  We have 39 more treatments to go before he gets a break and then we will see if we need to/want to do additional treatments. 

Tomorrow the folks at Chamber of Hope plan to take a video of Finn as a "before" and will do another video at his last treatment.  I am hopeful to see results but I'm trying to keep my expectations low.

Here are some pictures from Chamber of Hope.

Daddy entertaining Finn

Finn looking out the "space shuttle"

The space shuttle

The Glazer Children's Museum in Tampa - Sunshine Sundays

Today we went to our first Sunshine Sunday at the Children's Museum in downtown Tampa.  We had a great time.  For the four of us it was $20 plus about another $5 for parking. 

Sunshine Sunday is a special date and time for special needs children and their families.  The museum opens early, at 10AM, and they offer discounted pricing  The next dates are March 25th, May 27th and July 29th.

This was a great experience as I would guess and say there were less than 50 children in the entire place!  Finn and Camila had so much fun running everywhere and getting into everything.  What a great morning and lots of energy burned. 

The museum had a lot of volunteers and stations set up to for sensory activities.  The kids loved the expansive water tables, the "beach" area, the area where they could race turtles, puppies, and birds.  They loved the music station and the garden section.  They "drove" a fire truck and an airplane, went shopping at Publix and took care of sick puppies.  They didn't want to leave and I don't blame them.

There were children there with a wide range of abilities.  Some were ambulatory and some were not.  Some could speak and some could not.  There were two things all of the children had in common: they all had very tired parents and all of the children were having a great time.

There were a few special needs resource tables set up as well.  They had information on summer camps, gymnastics programs, etc.

Overall, I am very impressed with the Children's museum for putting on such a great event.  We are definitely looking forward to the next one.  If you would like more information on The Glazer Children's Museum Sunshine Sundays, please check it out at http://glazermuseum.org/events/sunshine-sunday/

Staying Healthy

Special Needs and low immunity seem to go hand in hand.  We struggled for a long time keeping Finn healthy.  He has low titers and we have been told he has similarities to cystic fibrosis patients.  Finn spent the majority of his first two years sick.  We ended up taking Finn to see Dr. Berger, a holistic pediatrician.  There are at least two holistic pediatricians in the Tampa Bay area that were recommended to us.  We chose Dr. Berger after multiple recommendations.  


We only saw Dr. Berger twice because he is expensive (not covered by insurance and ran us over $800 both times) and we feel like we now have good control over Finn's general health.  

His website is full of useful information for any child.  http://wholisticpeds.com/default.asp?cid=956655663&n1=19 on staying healthy, what to do on the first signs of illness, special diets, Epsom salt rubs, HBOT, etc.

What we have found most important to keeping Finn healthy.  As a note, we have been able to cut some of these items out, but we used all of these as we transitioned Finn into a healthy child:

• Probiotics - most likely if your child is having GI issues like Finn, your pediatrician has already recommended probiotics but may not have recommended enough or the right kind.  
• Vitamin D.  We use a liquid Vitamin D3.  
• Zinc.  We use a liquid Zinc.
• Larix - this is similar to echinacea but can be used every day.  Warning: it tastes awful!!!
• Colostrum - that's right colostrum.  We were able to get a casein free version of this from Dr. Berger.
• Vitamins 
• Fish Oil and/or Flax Seed Oil
• Liquid multi-vitamin
  
• A healthy diet.  Finn eats whole grains - quinoa and rice, beans, eggs, and lots of fruits and vegetables.  We have been very fortunate that Finn is a good eater when it comes to fruits and vegetables.
  
• Nose irrigation - well, you can't really irrigate a child's nose easily, but we do saline spray his nose in the morning and night to keep anything in there moving and help it out
• We check Finn's titers before the winter season sets in and give him the necessary vaccines
• We help Finn's digestive system by pureeing foods that are difficult to digest

We obtained proper dosing information, etc. from Dr. Berger and only added one thing at a time.  You don't want to overdo certain things such as Vitamin A as it can damage the liver so if you are going to change your child's vitamin regimen and dosage, you should consult someone to help. 

When Finn does start to show signs of being sick we do follow Dr. Berger's article titled "On the First Signs of Illness."



Finn started public school in September and I'm so happy to report that he has not had an illness that has led us to taking him to the doctor since starting.

Insipiration

Kate, we are inspired by you! You give me hope for Finn's future.

Quest, Inc.

One of the most difficult things about having a child with special needs is thinking about his or her future.  For us it is extremely difficult and as we try and live in the present as much as possible we do have to consider the possibility of what Finn's future may be so we may plan accordingly.  Will Finn have a job, a girlfriend, will Finn ever drive or live on his own?  These are real questions for us and they are difficult.  We have to plan financially and emotionally. 

A girlfriend of mine introduced me to an organization called Quest.  It is not Quest Diagnostics, but rather a non-profit organization headquartered in Orlando. 

Quest inspires and empowers Central Floridians with disabilities by offering choices and opportunities to learn, live, work and play. Through Quest’s comprehensive family of services, children and adults imagine and achieve their full capabilities.

Many organizations help children with special needs but it seems not quite as many help adults with special needs.  One question we have is what will happen to Finn after we are gone if he cannot live on his own?  It used to be that adults with special needs would be placed in institutions.  Quest offers homes as in real homes for just about any degree of disability. 

In addition, Quest assists in job training and placement.

QuestKids specializes in helping children with autism, pervasive development disorder and other learning and behavior concerns with individualized one-on-one programs using Applied Behavior Analysis (ABA).  To learn more about QuestKids please check out its website: http://www.questkids.org/

Quest also has two schools - one in Tampa (Hillsborough County) and one in Orlando. 

FACE - the Florida Autism Center of Excellence is a Charter school and it is free.  You must provide the transportation.  For more information on FACE please check out its website at http://www.faceprogram.org/

To learn more about Quest or to donate please go to http://www.questinc.org/

Sertoma

Today I want to tell you about Sertoma.  This is a timely post as Sertoma is giving away free hearing aid batteries until supplies last tomorrow, 1/23, at its location in New Port Richey.  Please refer to the upcoming events page for more details.

Sertoma is an organization that provides financial assistance for hearing aids, hearing tests, hearing aid batteries, etc. 

Those with hearing loss know that hearing tests are typically not covered by health insurance.  You may get one annual hearing test, but after that, there is no coverage.  If you have a child like Finn that cannot cooperate through a regular "booth" test, you have to do what is called a sedated ABR.  If your child has hearing aids, you may be required to get 4 of these tests annually.  They can run between $1,500 and $3,000 a pop depending on how long it takes. 

Sertoma can help cut some of the cost.  They have hearing aid loan banks, they conduct hearing exams, hearing aid evaluations, hearing aid repair, and hearing aid molds.  Sertoma also helps young adults with hearing loss find jobs.

Sertoma is located at the All Children's Specialty Hospital in New Port Richey, FL.  Some of their services are based on the family's financial needs, but don't let this stop you from completing an application because this is not true for all services.  http://www.familyhearinghelp.org/programs0.aspx

For those of you looking for an organization to donate to, Sertoma is one of those that really puts your dollars to good use and it is easy to donate to them when you renew your driver's license look for the option to donate $1.00 to them.

Please also keep in mind that if your children is in Early Steps or an early intervention program, there is financial help for hearing aids there too regardless of your income so please check with your coordinator. 

Managing Your Child's Medical Care

One of the most important things you can do for your child and yourself is to find the right pediatrician.  This person does not need to know everything about your child's issues.  Really, this is not relevant as your child's specialists will be the experts (well, not always) with the specific issues.  You do not need to see a "developmental pediatrician."  The pediatrician needs to be someone who is empathetic, a good listener, someone who can help manage keeping everything together and communicate between the specialists. The pediatrician may call you at 10pm because he or she just read an article and thinks it may apply to your child.  The pediatrician will take into consideration your concerns when you disagree or want to follow a different plan and will support it.  When your child's ENT doesn't believe your child has developed a massive sinus infection a week after sinus surgery, your pediatrician will believe you and help prove it to the ENT and help you find a new one.  Your pediatrician should be someone your child likes to visit.  Your pediatrician should ask you how you are doing and how you are coping.  Your pediatrician will know that you as the parent know your child best.

Equally important is the office staff.  The office staff should take your phone calls and get back to you right away and never make you feel like you are asking too much or asking a stupid question.  The office staff is critical to managing your child's medical care and is always happy to fax your child's entire medical history to a new specialist or provide you copies of everything.  The office staff will help you in obtaining free formula because the prescription formula your child is on is ridiculously expensive.  

If you don't feel like you have these qualities in your child's pediatrician: I would highly recommend you find another one and I will be happy to provide you with suggestions.

My second piece of advice is to maintain a record of everything - ask for copies of the doctor's notes and ask for copies of x-rays, MRIs, swallow studies, eye exams, etc.  You are not asking too much.  Keep everything as organized as possible and take it with you when you see new physicians or when you have your semi-annually or annually follow ups.  This makes you more credible walking into a doctor's office.  In addition, it is impossible to remember everything each specialist says if you are like us and see a multitude of them.  It is nice to have it handy.  I also recommend that if you are seeing a new specialist, ask your pediatrician's office to fax over the records directly to the new specialist prior to your visit and have a list of questions ready.  You may even want to fax over your list of questions if you think they are going to require research on part of the doctor.  I always knew I found a good doctor when I walked in and they told me they had already done research on Finn's syndrome.

In addition to maintaining records of doctors notes, etc. keep track of the bills and insurance statements.  We encounter errors frequently and you really should read over everything to make sure you are not being double billed.  Pay attention to how things are coded.  If insurance says they won't cover it ask them what code they need to cover it or ask the doctors office if they can try running it through with a different code.  Another tip is if your employer's health insurance program does not cover an item, talk to your benefits coordinator.  They can make exceptions.  Just remember it does not hurt to ask.

I hope this helps.  It has helped us tremendously.