Military Resource for Parents of Special Needs Children

The Army has lists and resources for everything! Just this week I was joking about how they do not have a resource for special needs families... then my husband sent me this link he just got. Head on over register and get your kit!!!

Families can now order hardcopies of the DoD Special Needs Parent Tool Kit, Special Care Organization Record (SCOR) for Children with Special Health Care Needs, and the Understanding Autism Spectrum Disorders booklet via the Military OneSource website. Installation EFMP programs can order up to thirty copies of each for their program.


Visit the special needs homepage at www.militaryonesouce.com/specialneeds

Frustrations

Alot of times I hear the same phrase - "I don't know how you do it." or "You have got your hands full!"

Truth is I know... but what I try to always remember is that it can always be worse and no matter what you just deal. You pray that it will only get better and thank God for the precious gift of parenting .

A while back I sat down and wrote this journey has taught me..


Things that I have learned-


sometimes people are not going to respond the way you want


you need to prepare for the worst – hope for the best


give it a chance


take it one day at a time


say how you feel but watch how you say it


enabling is not going to make their life easier it’s going to make your life harder


at least give it a try


when a stranger gives a compliment say “thank you”, when they criticize do the same


some people won’t get it, but there are plenty more that do


you get what you get and don’t pitch a fit works is helpful for the kids, but momma’s too

All in all when I look at this

 I just SMILE!!

Links about Chromosomes

Here are some links about chromosomes. Ty has a chromosome deletion on the short arm of chromosome 12. It was found by a CMA - chromosome micro array test.

Two Organizations which we immediately joined...

Unique http://www.rarechromo.org/html/home.asp - an international organzation
Chromosome Disorder Outreach- http://www.chromodisorder.org/CDO/

A littel about chromosome 12 - about 12

The frustrating part is while we have our diagnosis its still pretty rare. However, alot of the deletions or duplications have similar features of speech delay and behavior characteristics.

Websites

I think this is a great website for kiddos of all ages. Your kids can not only work on literacy, but learn other languages also...

http://www.literacycenter.net/lessonview_en.php

Speech Tricks and Tips for when they are little

Some quick tips for getting kids to talk.

1. Shorten your speech. Speek in 1 - 2 word phrases when talking and then as they grow add words. I love to talk but I remind myself I am giving way too many words. Check out this, while creepy its a great example of language for little ones and how you should talk to them.

2. Read every day. When a book has too many words shorten them. Start with these first... Repeat, Repeat, Repeat.  Do the same book and get them familiar with the words you are saying. Some favorites.. any by Helen Oxenbury for the little ones... Todd Parr , too.

3. Playing little games like peek a boo, this little piggy , where's baby  and when they get older asking many questions.. who, what, where why and how.

4. Put them in front of the mirror to watch their lips move. Get them familiar with their mouth. Put sparkly, sticky lipgloss and have them kiss a handheld mirror. This is  great time to "talk to baby". Then have them practice looking into their mouth and tell them to talk to the baby in the mirror.  This was Ty's favorite!

5. Give them signs or sounds. Start with the word, give it a sound and sign. Remember babies, toddlers learn to talk by small steps.

Part 4

During a one of our moves courtesy of the military, Tyler was almost ready to walk. He began to cruise while holding on to someone or something. He also was a master crawler and would crawl anywear (even on bare concrete). But, when we were moving he started to blossom. He was making progress in his gross motor skills. At about 2 weeks before he turned two Tyler would take 2 steps and fall. Then crawl. This began his welcome to the world moment. Tyler went from a really easy going baby to constantly moving. He made up for lost time. He opened the doors to big progress and it started a new set of chllanges.

Soon, I began to joke that Tyler was my own little workout. He did not walk well but yet became soooo fast. He was busy, busy, busy. New behavior challanges arose and in the meantime I lost a lot of weight from always moving with Tyler. It was exausting and luckily Ty has always been a great sleeper and time still took naps and crashed at bedtime.

Tyler started taking interest in Thomas the train! So we jumped on this as an attempt to get speech, motivate his walking and work on fine motor by playing with the trains. The sounds of trains helped and Ty would soon say "choo choo". As a parent we were able to figure out what this meant... video, wanting to play trains or wear a train shirt. But for Ty's grandparents or siblings it was a frustrating thing. 

Tyler did not point so the only way for him to communicate was by a smile.. he never really cried. His speech was very delayed at this point and communication was something not only he needed but we did, too. I knew some  sign language so I taught him "more",  "cookie" "eat" and "water". More became so universal, so did cookie. Cookie became anything food and "more" was everything else. What we learned was when you paired  a word or sign they know with another new word you start to open the way for more speech, more words and help give them their own "a ha " moments .  It also helped make connections for those around him to help understand what he wanted or needed. 

 Despite how much  he was interested socially, he was alot of times disinterested in things going on around him or playing with toys. When we engaged Ty by trains or by  letting him explore (sometimes difficult for the parents  :) )  he really blossomed. Now his interests are so vast and he has really becomed so much more involved with the world around him but when we as parents always worried about what would happen if... we were holding him back.  This is still something we are  constantly learning as parents...

He also drooled like mad. My mom always gave me a hard time with my other two children about bibs... this would change with Ty. We had tons of bibs. He would always have a wet shirt or it looked messy. We had to help Ty  become aware of his his mouth. To work on this I used a hand mirror and started showing Ty his mouth. I would model open, close and show him. Then I would have him do it and say the words. His favorite was the " kiss the baby". We used some sparkle lip gloss and kissed the baby in the mirror. Not only did this help with drooling, but alot of his oral motor skills and speech.

Some pictures- His first haircut...

 During our move....

Making progrss with walking... Look out Mom... getting ready to be busy, busy...wonderful news!!!!!

Part 3

In April 2006, we moved our family. As soon as we arrived we began the process of immediately getting Tyler's services started. This is always such a lengthy process, but one we could not delay. Early intervention and therapy have been essential for Tyler.

One day, after my husband had put up our train table we saw Tyler pull to stand. This was just one of many milestones that would happen in the next 6 months. Tyler was now 18 months and it seemed once he began to pull to stand the world was his to explore. He was on the move...  We started going to the pool with Tyler and I noticed how the water improved his motor control by giving him resistance. Going to the pool was very theraputic and looking back I should have had him in the pool daily. When a child like Tyler has a bad sense of body awareness and where his body is in time and space the pool helps by giving him feedback.

His eating also began to blossom during this time. He had some sensory aversion to textures and so by gradually increasing textures and working with various speech tools this seemed to also increase. Whenever we see progress in Tyler, we often see the progress in one area at a time. During our 6 months in South Carolina Tyler was gaining many milestones in motor function.

A great site for kids - both fun games and educational games. Go to http://www.abcya.com/

Behavior - A quick look

Behavior is a form of communication. When a child (or even an adult) has a hard time communicating they act out. Behavior also is manifest of other things. The goal is to ananlyze what is the function of the behavior and how to decrease the negative behavior.

Tyler has a hard time sometimes verbalizing what is going on with him or understanding our world. Along with sensory issues, he has some physical limits and has difficulties completing tasks that are hard for him. One is fine motor activities - getting dressed, scissorsing, writing and even using a mouse. A big physical task or gross motor activity - like using a tricycle, swinging , a core muscle activity or running with out falling. Its also important to note that sometimes we expect Ty to just know about how to handle something. He needs to be taught how and why things are happening. For example, he will focus on being hit by another child- we tell him he is ok. We don't think to tell him to tell an adult or to tell the child don't hit me.

So at times I have to assess what is happening. I use the A B C method. This can be done for lots of children and even adults in a variety of situations or to help identify a behavior you want to change. For Ty, I have to identify the behavior then and there. But, if you want to change a behavior pick one and work on it. Set up training sessions...
The ABC's are-
A - antecedent. What preceded the negative behavior.
B- the behavior - what do you want to stop or change? What was negative about this behavior? what purpose did it serve- attention, escape or sensory?
C- the consequence. - what did you do? how did you react? how did they react?


Once you begin to identify these, you look at what it is that is happening. Is it attention seeking, a method of escaping what's to har (are your demands too high), is it a sensory seeking behavior? How did you respond? Did what you do stop the behavior or did it make it worse?
So keeping a log can best help- you may not even know where to start.

 I will give an example of ty- during dinner being disruptive..

Ty likes to sit and eat his dinner, but when I am not directing my whole attention on ty he begins to roar, act up or try to interupt while I am talking to his siblings.


So - I want to decrease the amount of interuptions during dinner and have him involved with our conversation.
Here is what it looks like - I start talking and the kids begin discussing their day. Ty then roars, interupts them, climbs on me or them. He was fine before I sat down and now he wants to be heard .

A-sitting at dinner giving attention to kids and asking them how their day was.

B- anything to stop me talking to his siblings or talking over them - roraring, climbing, not eating

C-i stop talking to siblings. divert my attention to Ty and try to punish him for being loud

This is clearly Attention seeking. And it continued because I fed the behavior. I gave Ty exactly what he wanted.
So- now I either ignore his behavior and give him non-verbal cues. I also make sure we take turns and Tyler also has an opportunity to speak.
 
Just some quick thoughts to begin discussing behavior.

Hypotonia - Floppy Baby

In the very beginning I called my sweet angel a "floppy baby".  I am sure many people heard me as  I said it often. I never knew this was a sign of something not right... hypotonia -low muscle tone. Once Tyler began therapy I began using the brushing technique and doing joint compressions. I never really got a clear picture of how this all would help for my baby boy... but I did it. If you told me to wake up every day and stand on my head to help him - I would have. I never really questioned the therapist other then I knew it would help his central nervous system and muscle brain connection. Basically Tyler's brain needs help putting all the information together... but how and why were not clear.

It was not until three years ago I was introduced to  a fabulous book by our wonderful occupational therapist (OT)  to help explain and teach me why Ty was experiencing  difficulties. Anything from where his body was to getting his senses stimulated and awake to help connect all of the senses in the world around him


 I began reading and I was wondering why I was never introduced to this sooner. Some of it was definitly Tyler and it would become my go to resource for help. I then ordered


Alot of kiddos have it. But when it affects their daily lives and interupts normal development- you know your kiddo needs help.

I found this again recently and it sums it all up.

I want to explain to you why my child is

having such a rough time today…

What you are seeing when you look at my

child is not a child who is "out of control" but

rather a child who is "out of sync." My child

has Sensory Processing Disorder (SPD),

which is the inability of the brain to properly

and/or efficiently process and organize

sensory information. When my child's brain

receives information through any of his

senses - sight, smell, hearing, taste, touch,

vestibular or proprioception -- he doesn't

always know what to do with that information

and can become very disorganized,

overwhelmed, frightened and confused. You

can read more about SPD at

www.spdnetwork.org.

My child has good days and bad days. You

must have run into us on a bad day. I

apologize if we have made you uncomfortable

or if we have been disruptive. My child is

currently involved in many types of

interventions, working on these sensory

issues, so that he can feel normal like you

and so that when we go places, he feels safe

and comfortable in his own body. It is going

to be a long and difficult journey, but in the

meantime, please know that inside him is a

beautiful and magnificent little person

waiting, hoping and trying to emerge!

Think about how difficult my child's SPD was

for you today, then try to imagine

. The next time you see us

out somewhere, please understand…

Part 2

Part 2

Following all of our mis diagnosis we were given Cerebral Palsy as a diagnosis for services by our Atlanta Neurologist. It felt a little like lying, but they could not rule Cerebral Palsy out either (although I think he was like this inutero) and he needed a diagnosis to help with his services. He then was a little hesitant to when we said we were going to a developmental pediatrician. Either way he had a EMG – they stick little pin type needles (think acupuncture) all over him to determine whether his central nervous system was working. It was and he said whatever this is would not be something that would worsen over time and whatever physical issues he had he could use equipment. Anything more we would have to wait and see.

As therapy got underway, Ty was becoming physically better every day. He always was smiling, looking and looked like he was trying to tell us something. He would drool like crazy. I never was a bib mom, but now due to how much he drooled I made sure he always wore a bib.

Tyler still had some feeding issues that caused us to worry. He would not eat anything other than a bottle without choking or sounding like a rattle. We were discouraged to do anything other than cereal or rice to avoid aspirating. We had a lot of swallow studies and saw a gastrologist (he ordered more tests). He also was taking all down to go to the bathroom.

When we went in October to the developmental pediatrician she was so convinced he had a genetic issue. She ordered tests and then immediately referred us to the genetics at Emory. Certain genetic features – pectus excavatum, his fingers, his eyes, ears, slightly upturned nose and a starburst patterns in his eyes (stellate irrides).

Off we went to Genetics in December and they ordered more tests. Williams, Angelmans, Retts, a diff Prader Willi and specific genes to do a FISH. The outcome would be negative, negative and more tests ordered.

So finally in November during Thanksgiving– Tyler sits with tripod sitting –at first it was a second. But then minutes and we would put him there and work on him taking his hands away. Slowly but surely he would do it. December he would really start sitting with his little hands in front and he started tracking us with his head. He would lose his balance, but this got better. It was January when the hands would no longer be needed and he actually could sit for a few seconds. Soon we moved on to sitting and reaching and tummy crawl.

When February came we were given advice to do a muscle biopsy. We actually got a second opinion because how invasive would this be and given he was making progress was this necessary. Our insurance was denying and if we were to fight it we wanted to make sure it was a wise decision. I knew that Ty was making sooo much physical progress and had been poked for months. Shawn and I got our second opinion and the doctor agreed – was the biopsy going to change how we treated Tyler now. The answer was no. So, we let it go and decided to drop the mitochondrial testing for now. He was almost creeping and then crawling would come. Why put a setback for a invasive surgery?

Helpful

Here is a great organizer tool that I have used several times ... Save it, Print it and Use. I got this ages ago before Ty was diagnosed and I have used it for all of my kids. Its a great thing to centralize all of your information and its organized - I can always use the help. :)



Special Care Organizer or SCOR

(I cant figure out how to attatch a file here... but if it does not work email me and I will send you it.)

Also- a really cool tool...

I have used this to write stuff down during dr appts so I don't forget what I need to tell them and to write their suggestions.
a litte takealong note.

Educational

Through this maze I have learned alot about what to teach Ty and his siblings... I will be updating and adding websites and posts on some quick tricks that would help all kiddos...

So,  a friend  sent me this link and I started here. Its has now become a learning explosion at my house. I don't like to spend lots of money on "school stuff", so what I have is found online. For the little ones start here...this is where we are with Ty on letters. I once was really unsure he could understand letters and that is completely not true now. Along my journey I have learned to not set a limit on what we think he can do rather expose him and give him just as much opportunity if he was not labeled.

First- this is great - Thanks KC!
 http://www.elizabethfoss.com/elizabethfoss/serendipity/along-the-alphabet-path/index.htm

Want to know what your kiddo should do?
http://www.mychildwithoutlimits.org/?page=developmental-milestones

Need to keep the kids busy for a moment ( I know right?). ...
http://www.sparkplugging.com/sparkplug-ceo/94-ways-to-keep-kids-busy-for-the-work-at-home-parent/

And finally -- when in need... youtube and make a play list. Land Before Time, trains, thomas videos, Travis Barker Soulja Boy... all  help at least let me finish dressing or get some task done with distracting Ty just long enough. I also put on ABCs, signing time or School House Rock. Ty seems to be drawn to music so those are quite helpful.

Part 1

Five years ago, a ginger haired baby boy was born. He joined two older siblings almost 4 and 3 (14 months apart).  I was still a young mom and  I could not imagine having 3 children to take care of and a husband who was active duty military. But, as all mom's do, you just figure it out.

He had mild complications with his birth due to meconium aspiration following a c-section, but he got to go home with a normal bill of health. At two weeks everything went well and he really was a easy baby. Almost never cried, slept through the night and all the house noise. At four weeks old, his big brother was hospitalized with Reactive Airway Disease and failure to maintain oxygen levels. Dad and I took turns switching at the hospital. A nurse who saw the baby when we were switching said he looked and sounded as if he, too was having issues with his breathing. She sent us to the ER downstairs.

From then on began our "mystery diagnosis"... Ty did not get hospitalized that day, but it did begin the quest to find out what was going on with him. At first they were convinced he had Cystic Fibrosis... waiting, waiting and more waiting when finally it was negative. I should have known that it was negative because I kept licking him to see if he tasted salty ( I google alot and must have read that somewhere). 

Next, he had constant URI and some ear infections. Poor little guy was poked and prodded constantly. All the while he seemed to develop normally... However I called him floppy baby and not one doctor or nurse picked up on it. At 6months I knew he should start sitting. I also was quite aware that babies develop at different rates, but I could senses something was not right. I assumed he must have his equilibrium off due to constant ear infections (probaly read that somewhere, too). I then bought a bumbo chair - which at the time did not get all the attention it does today. I found it online and called ironically, the town where I was born that made the chair. I got it, put him in it and he just could not hold his head up. I then did tummy time all the time. It really never helped.

At 8 months I made an appointment (my military part of the story will have to take a different post), I went in and saw a resident, he said babies develop differently, he tracks, he smiles and he looks normal mom. Then, in came a off post doctor training the resident and she did an exam. She then excused herself , asked the resident to step out and me to wait.

She then came in and the resident took a back seat. She asked where my husband was and wanted him to come join us. In the meantime they rushed us to draw labs. I could tell something was up, but I did what I needed to do. After the labs were drawn I went back to the room. My husband had not made it, but she explained she was very concerned about Tyler due to his respitory illnesses, his low muscle tone and failure to thrive.

At the time I had no idea what she was talking about. I only knew I did call him floppy baby and I knew he missed his milestones. She explained she drew labs for a CPK and they came back high. She wanted more labs immediately and for us to get to Atlanta to see a neurologist and developmental pediatrician. She suspected he had some sort of muscular dystrophy. She also put in immediate consults for physical, occupational and speech therapy - both private and educational. I think at this point I was just going through the motions.

She then talked to my husband and I together. She explained the many causes that it could be, but really it would be a waiting game. She was concerned for our whole family and offered many support references. At the time I could not imagine what was happening and I really did not want to wait.

I wanted to know right now what was going on. What all of this meant and how his future would be. My husband did, too. I remember he took the remainder of the day and we went to the park. He told me not to cry and be strong for our kids. This seemed impossible... but we made it through the day. We worried and wondered. The next two weeks were filled with appointments and people coming to the house.

I could not wait to get to a doctor to tell us what was wrong. We went and they set up more appointments. It seemed like an appointment to gain a appointment. I was sooo frustrated. Then every little thing Ty did would get me worried and wondering what was this.