At time it really does feel as if everything is set against us...

It's almost 3 a.m. and I am on the verge of exploding.

I am filing insurance reimbursements for Aliyah's speech therapy... Already denied for a good GRAND chunk of  it, but that is because ONE: I went out of network, TWO: Hand picked Aliyah's provider, and 3) went on to filing my own claims ( reason why I can't get them to pay me back!).....

I am appealing, because I am a newbie at filing claims .... obviously I did something wrong!!! I was suppose to be reimbursed at least 75% of all expenses, but since I met my catastrophic cap, Aliyah's insurance SHOULD cover 100% of it!!!!...  My daughter needs therapy, so no one is going to take that from her, not my husband, not my credit card company, not even her insurance ... NO ONE!!!!!! thank goodness I have a $8,000 credit limit on one of my credit cards... thank effing goodness!!!!

Why am I emotional?

Why?

Oh, it must be because all of this financial bullshit we have to go through on top of our daily life as special needs parents. SPecial needs children are very expensive... medical bills are ridiculousness... I feel broken once again...

I did call it a day and tried to go to bed but as I lie down next to my 4 year old -Aliyah I can't help it but to feel USELESS.. like a piece of shit.... can't do anything right... I need to get those claimed settled or else I am failing Aliyah.... 


Why do I feel shitty???? Must be because of the noun "BOWL"...... yes now certain vocabulary bothers me... Today Aliyah wanted goldfish crackers.... she signed it -great, even vocalized crackers, but when I asked her to go and get me her bowl that was on her high chair... she kept on saying "crackers" NOT understanding why I am asking her to get her bowl... Bruce, my 2 year old grabbed his bowl and asked for "fish crackers" and "cheese" sticks.

My 4 year old did not understand the word bowl... and that makes me very fragile. Aliyah is on the 25% percentile when it comes to her height and weight ... so she sometimes passes as Bruce's Twin (he is a tank on the 95% percentile for height and weight).

But how will I feel when she doesn't look like a toddler anymore... how would I go about it when she is in grade school.. a teenager!!!! I am racing against time.... The world is against me (I know damn well its not) but I feel as it is. Anyone and anything IS against me when I get this way I ... I guess I have this verge of shutting anything and anyone down.... This insecurity on life, on what is to become of Aliyah's future - gives me this ... this sense of  energy... tense energy..."at the edge energy".. The type that one doesn't want to mess with because I will go at it until I get what I need and want....

BECAUSE SINCE I CANNOT CONTROL MY DAUGHTER'S SITUATION I HAVE TO CONTROL EVERYTHING AROUND ME.... 

I remember when Aliyah's "former" Speech therapist over booked us and made us wait for an hour (even though it was HER DAMN MISTAKE) Yes, you better believed I fired her!!!! I have no time for her stupidity. Some people just annoy the living crap out of me... Do what your paid to do and help my little one. I have NO time for other people's bullshit. NONE

I know I do burn bridges .... But that's because the MAMA BEAR in me cannot contain herself.  If anyone messes with my daughter's schedule, therapy services, or her education I just go at it... and will fight to get the right person to get that fixed asap... I may be a young mom but I will voice my opinion and I will find a way to get things done.... even if it was denied. I WILL find a way... I can be a nightmare to most because I am all over my child's progress and if I feel my child is "failing" under his or her (provider's) standards, that must mean YOU (the provider/therapist) FAILED MY CHILD....


I don't know who is reading this... don't know if you have walked on similar shoes before... but sometimes I do not know how I am going to wake up and ready to survive another day..... I know I should pick the right battles... but to me I need to face them all.. because that is the type of parent Aliyah deserves.... one that would do anything for her...

My sweet and tender little girl stole my heart... She unwillingly has buried me with my own tears.... and I caged myself into this state of mind where sometimes I fight myself to shake things off.


Life is not simple... Life is complicated...  But the one thing Aliyah has definitely taught me ... is to not be selfish ... I love this little girl so much it hurts. how I wish I could take her spot so she could lead a "typical" life. I guess what is hurting me right now is  ME NOT ABLE TO LET GO OF THE "WHAT IF ALIYAH was a nuero-typical child..."

those type of thoughts haunt me and is no good for me... it is a poison I need to get rid of.

Mid June 2013 Physical Therapy

Here Aliyah is working on the Balance Beam with her Physical therapist, Andrea (she is Amazing!) . I think Aliyah has trouble on this because she is not focusing on where her feet are, she is distracted by her surroundings.. especially those trampolines (her favorite activity)

 

ALiyah doing her FAVORITE ACTIVITY Jumping on the TRAMPOLINE!!!!

On this video Andrea is helping Aliyah with Pull-Ups....

Saved the BEST FOR LAST!!!!!! Aliyah shows off her strength!

(Delayed audio on video)

Swinging on Rings & Monkey bars

Who remembers "Lite Brite" ?

Aliyah sees Amanda for Occupational Therapy at home twice a week at 7:45am!

Yes, she starts early! But the great thing about all of Aliyah's therapists, is that they are all fun!!!!!

Amanda introduced the Lite Brite to Aliyah and explained to me all of the benefits this one toy has. Such a great fine motor tool ! 

Amanda told me she got hers at a thrift store. So after she left of course I went to the nearest thrift store and spotted a 'traveler's' Lite Brite for $2.60!  Since I was in the mood for shopping for educational toys/materials I went to a children's consignment store, where I found a                    "cube" Lite Brite for $12! 

 Both Lite Brites did not come with there refill paper.. No worries.... During Aliyah's session Amanda used a plain white sheet of paper, cut it into a square so it can fit the Lite Brite insertion's surface.

The thickness of the paper matters. The thicker it is the more strength Aliyah's needs to use exert on the pegs. (a nice workout for her fingers) Also on the paper you can make patterns.. I drew a horizontal and vertical line. In time Aliyah will put pegs on line, and when she does I will post that accomplishment in this blog!

Download youtube videos...Watch them without needing internet...

Don't have internet and your child wants to watch a show or children nursery rhymes on youtube?
Good thing you downloaded videos to calm your fussy child by following these steps!!! It is a headache reliever when Aliyah is having one of her bad days! 

My former professor's husband (computer engineer) explained it step by step how to do this over the phone... I had some trouble getting it done, so hopefully these visuals will help you get things done promptly.

1) Download Firefox 

2) Click on the AD-ONS icon or click here

3) the the search bar type: Video DownloadHelper

4) Click on "+ Add to Firefox"

5) Go to youtube and search for the video you want to download to your iPad.

For Aliyah it has to be anything related to Mickey Mouse. 

6) The Video Downloadhelper icon was to the far right of the address bar. 

It is circled in red. Once you locate it there is a down arrow that you need to click on.

on the drop down menu select the file that ends with ".mp4

7) Then you choose where in your computer you want you movie files to be saved.

8) Open your iTunes and folder where your video is saved (lets call this folder "x")

9) On itunes open your "movies" folder 

Then simply drag your video from the "x" folder onto your iTunes screen. 

10) Sync it to your iPad :) Take it wherever you go!!!

If you have any questions you can comment and I will do my best to help you! :)

Finally! I don't have to worry about no internet access in order to get my little ones calm .....

Learning Toys

These are some of the materials she uses during ABA, Occupational Therapy, and of course mommy and Aliyah time.

About a month ago Aliyah "graduated" three piece puzzles. You will notice I am a HUGE MELISSA AND DOUG FAN! The Fit-AShape Boards I purchased from Lakeshore (love their store) Aliyah now can recognize "shapes" of the puzzle pieces. She looks at the board as a whole and searches what is the best match... that was a BIG step! Great problem solving skill she has acquired! 

 All of the puzzles above Aliyah can easily do....unless she gets "lazy" and started acting like she doesn't know what she is doing... That my friends is her personality :).. my girl just wants to stop working hard and play with her other toys or better yet, her Ipad. But when she really wants to she can do all of these! ( If you would have asked me three months ago if Aliyah was able to do these I would have said "maybe next year") Aliyah has taught me to NOT  underestimate her. 

Almost forgot t mention ALiyah's favorite is the "sound puzzle" makes the animal sound when you insert the correct piece.

I try to change things up .. They both may be shape puzzles but the background of the piece did not throw off Aliyah's thinking.. she still manages to get her task done. Love the puzzle on the left.. Helped me show Aliyah all things have shape :)

The number puzzle on top with the background animals, she does great with, the 6 and 9 can get confusing for her. The 6 and 9 cannot "interchange" slots, they fit differently, making it hard on Aliyah to complete the puzzle. The number puzzle on the bottom is more difficult on Aliyah, its plain with no picture in the background. This one Aliyah tends to guess on, and some she does try for example she puts the 1 on the 7... assuming because the 7 has a straight line Aliyah is looking for when grabbing the  1. Every time I hand her a number piece we tell her the number out loud. 

We have not started working on these, but since my 2yr old can do this... and Aliyah cognitively is around a 2 year stage I am assuming its okay to expect her to be able to do these types of puzzles, matching based on color and pattern.
 

Now that she understand puzzles. Her ABA therapist is moving on puzzles pieces that make a picture and interlocking puzzles pieces. Aliyah has trouble on the "block" puzzles She doesn't understand the concept on you having to keep on turning the block until you match the other block. (It also makes animal/vehicle sounds when you paired the two correctly)

The Leap frog matching pair, she has gotten better at turning it until it fits... now all she needs to do is understand she needs to match the pieces together.

Aliyah can almost do the dog puzzle all on her own. The rest she needs hand over hand assistance. The interlocking puzzles is a goal I am hoping.. expecting her to accomplish.. I can no longer underestimate my little girl. I am not going to be the one holding her back

Dad- "Aliyah is perfect"

                                           

I guess for mother's it is easy to let it out...

Let out what is in our minds, what our hopes are, what exactly is bothering us... Women in general must have been made that way... to be vocal about their concerns.

Now men.... I just do not know.... what is my husband thinking? And of course, I do ask... (I am dying to know).... I do ask what are his thoughts, I need his input... I want to know his feelings about our special needs daughter. I do not want to feel as if I am dealing with this special needs stress all on my own.

Aliyah is our first child, so for the most part everything she accomplished was a milestone not an "inch-stone" when comparing to neuro-typical children. Even though we knew she was delayed, we had no clue how delayed she was until we had our second child, Bruce.

When we compare our 4 year Aliyah to our 2 year old Bruce, Bruce is ahead of the game and often acts like Aliyah's big brother.

Of course this gets me emotional, but for Sean, my husband, Aliyah's dad .. I just don't know.

I guess you can say he is the rock of this family. I crumble into pieces and he stays strong. He told me he doesn't need to cry to show his true feelings. He just thinks positively, and to keep in mind everything can be worse. We are fortunate to still have our Aliyah, epilepsy did not take her away from us. And that we do have blessings.

When I get pessimistic and extremely emotional he does not want me around. And I do understand that. ... Sometimes I would like to have my partner hold me and let me know.. to
reassure me everything is going to be okay, but I guess he does not tell me that because he, himself is not sure if that is true. His motto is "take it one day at a time." After that motto he usually ends it with "Aliyah is perfect."

A Father with a special needs child may deal with emotions differently than the mother of the special needs child. But I know he hurts like I do.. because he loves our baby girl... what parent would want a child to have any limitations cast on their child?

Accent 700 Pre-authorization letter to Insurance

Hallie using PCS instead of the device since Aliyah was more interested in the velcro behind the symbols. It is nice to have back up material to keep Aliyah focused! (Accent700 is behind Aliyah) 

Below is a letter written by one of Aliyah's Speech therapist, Hallie. She is helping us get our insurance to approve her teaching Aliyah how to use her augmentative device.

"Friday, August 30, 2013 

To Whom It May Concern:

I am writing this letter on behalf of a young client of mine, Aliyah Hoffman, and her family. Aliyah has a chronic form of epilepsy and has recently experience a return of her myoclonic seizures. Despite the fact that Aliyah has a chronic form of epilepsy she has demonstrated the ability to learn, particularly in the areas of receptive and expressive language.  That said, Aliyah has limited verbal output. This is why it is imperative that we start using her Speech Output Device, the Accent 700 in our therapy sessions. 

In the time that I have been working with Aliyah, I have been able to document her progress on her current goals, which all center around providing her with a total communication system to allow her to communicate her basic wants and needs. A total communication system allows Aliyah to use approximations of signs/gestures, picture communication symbols, vocalizations, verbalizations, and/or her device, the Accent 700.  We have introduced Aliyah to all of these forms of communication and she will use at least one to communicate when highly motivated.

On Friday, August 30, 2013 Aliyah demonstrated that she knows more vocabulary than she uses expressively.  In a field of four pictured items, Aliyah isolated a pictured object and pointed to it to show that she knew the object that went with the said label. On a trial she was able to do this with 16/30 pictured items. The items identified surprised Mrs. Hoffman and I. We were not aware that Aliyah had some of the vocabulary that she demonstrated she knew during this task. Aliyah is not able to communicate that she knows these labels through her vocal or verbalizations without assistance (e.g., the Accent 700). As a result, it is crucial that Aliyah begin to learn how to use her device during our therapy sessions.

It is also imperative that Aliyah learn to use her device as she needs to get her basic needs and wants met. If she is hungry, thirsty, in pain, and/or wants to communicate more than a single word to a communication partner, she will need to learn how to do this via the Accent 700.  

Additionally, Aliyah does not understand safety and rules of safety. The device is a means of communication that will allow us to teach her basic safety rules and the verbiage that accompanies those rules. She will be able to communicate to someone if she is lost, only if she learns how to do so on her device. It can be as simple as programming one key that states, “I am lost. Please help me…” and teaching Aliyah to use that key if she is ever to be stray from a familiar adult. The device can also be used for Aliyah to share information related to her safe. For example, if another child or person has hurt her she can share that she has been hurt including where, how, etc. While these are just a few examples, it should help to demonstrate why it is a very crucial area to teach Aliyah. Based on our total communication approach that we have implemented thus far it will be most effectively done and generalized to real life situations if taught via her Accent 700 device.

Aliyah has shown the ability to learn the buttons and meaning of the buttons on her device. As a result, I feel very strongly that this is the primary means of communication that can help Aliyah gain access to her current preschool curriculum and her school curriculum in the upcoming years.

With Aliyah’s chronic seizure disorder, speech and language will be a lifelong challenge. Teaching her to use the Accent 700 will allow her to communicate with her parents, teachers and peers. It will help her get her needs and wants met. It will help keep her safe and give her access to her school curriculum. It is imperative that her Accent 700 device be used in her Speech & Language sessions as she needs the device to achieve successful communication.

If you have any questions about Aliyah and her needs, I can be reached at XXX-XXX-XXXX. Please do not hesitate to call.

Thank you for your time,

Hallie Freedman, MA CCC-SLP"

Picture Communication Symbols

Aliyah is still settling in the idea of using her augmentative device, but since the icons in the device are too small and not so appealing to Aliyah we are ALSO going to use Picture Communication Symbols, PCS. I already orders my Boardmaker from Mayer Johnson to print more pictures than the ones given to us by therapists. You do not need to order Boardmaker, you can make your own pictures by simply taking pictures with your phone. I just chose to purchase Boardmaker because these pictures are used in a special education classroom so I wanted Aliyah to be able to recognize them at home and at school. 

Items used to make her PCS folder:

Binder

Velco Sticky Back

Sheet protectors

contruction paper

Laminator

Cut off pictures

1) Slide in Construction paper into the sheet protector

2) Cut strips of (soft) velcro

3) Attach by using the sticky side onto the sheet protector,  3 strips of "soft" Velcro per sheet ( you can add more strips but it will look more clutter and distract your child)

4) Laminate and cut your Symbols

5) Attach "Rough" velcro onto the back side of the Symbols 

 You can categorize using different color construction paper. "Drinks", "Schedule", "Fruits and Vegetables", "ABA Therapy", "Clothing Items", "Colors and Shapes", "Favorite Foods"

Augmentative Device

Aliyah's Private Speech therapist has been using Aliyah's Augmentative Device, Accent 700.
They programmed how they wanted to display the screen, deciding how many cells they want Aliyah to see.

 Obviously that many pictures would distract and overwhelm anyone just starting to use any form of speech device. Which is why we selected which ones to display and which ones to hide.
For now we decided 5 cells with picture would be a great starting point : "Play", "Gym", "Eat", "Sleep", and "Go".

If Aliyah were to select "GYM" another row of options would pop up. She would get to chose what activities she would like to work on while in the gym. "Swing", "Trampoline", "Horsey", "Rings", "Jump", and "Rope". 

IPad

Aliyah has an Ipad but she doesn't know how to use it yet.

So I am doing research on how to make it as useful as possible for her. 

I have come across this website I would love to share with you.

Setting up your iPad

Before this, I was just purchasing "any" educational app products... now I realize, since I do have a special child, I need special apps that will help her learn in a special way.

APPS FOR CHILDREN WITH SPECIAL NEEDS 

has helped us select great apps for Aliyah! Like "GoGo Games" and "Preschool Motor Skills".

I will continue to gather more websites for you all!

MY KIDS ARE ADDICTS!!! 

Dance to the Music

Aliyah lately has been singing the ABCs using letters A,B,G and E for the alphabet. She seems to remember certain parts of the song, but won't repeat it back during circle time or when requested. Just out of the blue, you would hear segments of songs, it may not be clearly but the tune is there.

This video was taken sometime in May2013 in her special needs classroom, she is doing what she loves doing best, jumping and listening to music... At the end of the video, you can see my son, who came to visit and dance with her.

Watch Aliyah Hop to the Music

ABA THERAPY- PUZZLES

Aliyah started ABA therapy about 2 months ago and she has accomplished so much since then!!!!
We first started 3 piece puzzles and now, 2 months later are doing 9 piece puzzles.

Her sessions are 2 hours long, so she does get tired and tries to play around by putting objects, like her puzzles pieces and laughing about it. She is such a silly girl!

I feel bad saying this, but I underestimated my baby girl. I thought it would have taken her at least 9 more months to get where she is now. Just goes to show me, Aliyah is a strong and bright individual! I should forget all the negativity we have heard from her prognosis.

Watch ABA Puzzle Session

Celebrating Aliyah's 4th Birthday with classmates and teacher :)

Aug 2. 13
We celebrated Aliyah's 4th Birthday at home and in her classroom setting,  I was trying to get some practice blowing candles. Even though she didn't actually blow, she tried and that is enough for me :)

Aliyah can blow bubbles, she just needs time doing so. Meaning, if she can blow bubbles she can definitely blow her candles.

That night, like every other "night before her birthday", I had a meltdown... Birthdays are an emotional roller coaster for me

Watch Aliyah celebrate her 4th Birthday at School

Adaptive and Typical Tricycle / Scooter

Aliyah during her Physical Therapy, July 2013

Adaptive Tricycle: When Aliyah is outside she uses an adaptive tricycle. She has trouble pedaling uphill (the adaptive tricycle facilitates uphill obstacles).

We ordered our adaptive tricycle from Amtryke
This is the model her therapist chose for her: 50-FC-1512 - ProSeries 1512 W/Rear Steering Control

                         
Typical Tricycle: I am not sure if you can see that Aliyah's therapist duck taped her feet onto the pedals and duck taped her waist around the seat, so that Aliyah can focus more on pedaling and less on trying to fit her body back onto the tricycle.
                                                                    Watch Aliyah on Tricycle

Aliyah also practiced riding on a scooter! Hope you enjoy the videos!

Watch Aliyah on Scooter

Video of Aliyah April 2013 during her VEEG

I forgot to upload this video, for everyone... Sorry, But finally its up! I think this will  help you understand my daughter better than my description online.  

At that time she was 44 months old. We were trying to be proactive while admitted. Wanted to work on fine motor with her :) And mostly earlier this year she did American Sign Language. Which is why I kept on asking her "show me please" cue to "show" me her sign. Signing has facilitated her communication. 

Watch the Video

Later this month when I have everything in one laptop I will make another compile videos of her therapy sessions... you will see a drastic difference in Aliyah. :D

Aliyah VS Infantile Spasms won 1st place in the Midwest Region of the Epilepsy Foundation Campaign

The Epilepsy Foundation started the "Now I know" Campaign.

Aliyah VS Infantile Spasms won 1st place in the Midwest Region of the Epilepsy Foundation Campaign back in January 2013

They asked "When it comes to epilepsy, what do you know now that you wish you knew sooner?"

This video was made to share some of the things I wish I knew when my baby was initially diagnosed with Infantile Spasms, a rare and severe form of Epilepsy.

I did this video in one night! I messed up on the campaign's name!!!
I know how embarrassing :/ But that was the name my friend informed me of :( Oh well I just wanted to make this video to help in any way.

If you are planning to make one please let me know!!!! So I can share with other IS parents, especially the ones that just found out.

Watch the Video

Aliyah's 4th Birthday.. (will upload videos later this month)

After my good meltdown the night before her Birthday, the next morning we sang to our birthday girl! Prepared for her Minnie birthday party! I cannot let my sadness ruin my beautiful little girls big day, she turned 4! I cannot allow Aliyah to see me cry. There is no reason why she should ever see me cry. She is so tender, serene, sweet, gentle. Her world should be full of happiness, my only duty as a mom is to make sure she is happy.



Aliyah doesn't understand yet to look at the camera for photos, which is why the picture above is gold to us! Sometimes she does say "CHEESE" because she hears everyone else saying it. :) 

8/5/13 3days/2night Video EEG

In April 2013 overnight Video EEG report Aliyah had 3 silent seizures, also known as subclinical seizures there was also talk about partial seizures... Aliyah has had those for a while too.  You cannot see the subclinical seizures, only through an EEG is it possible to report such seizure activity. They told me these type of seizures are not good for a growing child to have, makes learning difficult for the child. This was while we were only on Sabril (Vigabatrin)... We asked our neurologist if we could get her off of Sabril because it was going to be a year of her on Sabril and we were concerned about it damaging her peripheral vision.

Dr. Bergqvist at Children's Hospital of Philadelphia suggested a good replacement medication is Lamictal.

We are now entirely off of Sabril and on full dose of Lamictal. We were only suppose to do an overnight EEG, but right before Aliyah leads were being "glued" on the EEG tech saw what might have been a subtle myoclonic seizure...... Which is why her EEG lasted 3 days and 2 nights. They were trying to catch another myoclonic seizure, but they didn't..... It was mentioned it might have been her body reacting to having no Sabril in her system, regulating ...

But other than that Aliyah's EEG looked promising, this time she had no Subclinical seizures! But her EEG showed constant discharges.... meaning her brain is in a constant "seizure mode", they explained to me this should not hurt Aliyah's learning potential, it just shows her brain is very prone in having another seizure.

Our instructions were to log and report any more seizure activities.

Yes... I still get emotional on Aliyah's Birthday... A reminder I am racing against time for Aliyah.

August 2 , 2013 "So Birthdays are really difficult for me to handle, I am at my most fragile state of mind because I feel as though time is ticking and Aliyah has not made as much of progress as the typical children, and with a new year acquired the gap keeps widening making it even more imposible for Aliyah to catch up.

On her birthdays I realize Aliyah, well the Aliyah I would of have is not coming... Epilepsy took her away from me.

I will never be at her ballet recital. She won't be able to speak Spanish with me or learn Latin. The lost language which is the root of many other languages which would have facilitated her journey to try other languages. Or let me teach her how to play the viola or flute. Or take advance salsa classes.  Let me set up her sweet 16 ..let me say "no boyfriend untill your out of college"..pay for her wedding, let me take care of her children... Epeilepsy took all of this from her and her mother... Even before she was born I planned her life, i know god must have laughed at my plans...

I love my sweet and tender Aliyah but I cannot help it to mourn for the Aliyah I would have had.. Epilepsy did too much damage to her brain...I feel as I lost a child, I know that sounds ridiculous... But I get this way on Birthdays.. Healthy little girl.... Everything went great until her seizures started.. A few a day then hundreds a day.... They were so subtle.... They were not the traditional convulsions... Epilepsy disguised itself so well.. We might of missed Aliyah  window of opportunity.

I know I have issues.. But I could have sworn I thought I was over this I thought I accepted the fact I have a beautiful special needs child.

I guess i am not there yet.. But i wish i can get there because this feeling i have right now is killing me, i hate this.. I feel as I have no one to really talk to about this. I know you ladies are their but i guess its easier writing and letting go of ky thoughts here... Getting this off my chest. I just want this feeling to go away.... I just don't do well with birthdays" 

New to Infantile Spasms?

Many parents ask me what I wished someone told me the day we found out what Aliyah was diagnosed with....

1) NO TWO NEUROLOGISTS are going to give you the exact same treatment. Neurology is a field that is not clearly understood and not much research is done on severe and rare pediatric epilepsy. So go and market for the right neurologist.

Don't like your current one, no worries, on to the next. Some may have terrible bedside manners but only you as the parent will know if the neurologist is doing everything he or she can in order to get rid of these spasms. ( Aliyah has seen over 11 neurologist, and consult with 2 or more at a time)

2) Keep a SEIZURE DIARY at all times! Describe the seizure activity and write down the time and date. And if you can describe what the child was doing before his or her seizures occurred. ( I know it sounds odd but Aliyah's seizure for a small period was stimulated by loud sounds or the "NO" shouts, especially after eating a non-Keto food while on the Ketogenic Diet)

It is also great to see if certain meds work better than the other. (We noticed a dramatic decrease in seizures while on Sabril, when comparing to Depakote or Banzel) Also note when your child is accomplishing any form of mile stone even if it can be describe to typical parents as inch-stones ( While Aliyah was taken off of Topomax we notice she was babbling up a storm, and when on Lamictal she started saying words, building up her vocabulary)

3) THERAPIES.... Your county comes out to your place and provides all of the services needed for ages birth -3 years old... After age 3 the school district takes over. In Iowa they were known as AEA, Maryland: Infants and Toddlers Program, and in New Jersey: Early intervention. The name may differentiate from state to state. (Income is NOT a factor for qualifying) If you are having trouble finding the agency call your pediatrician he or she should have the number.


Get as much therapies as possible. Aliyah is under Tricare Reserve Seleect (military insurance for Guard) with that she was entitled to Speech 1hr sessions 4 times a week, Occupational Therapy 1hr sessions 4 times a week, Physical Therapy 1 hr sessions 3 times a week, and ABA therapy  2 hr sessions 3 times a week. Plus she has an IEP (Special Needs Curriculum Write Up) she has extra Speech and Occupational therapy services there too and goes to preschool for 5 hours,5 times a week.

4) PLEASE CONTACT YOUR LOCAL EARLY INTERVENTION AGENCY. It is a federal program, income does not matter. Our IS children are indeed eligible. Once you are in the Early Intervention system they will give your child the proper evaluation. That evaluation will determine if he or she gets free home therapies. Use them for local resources, too!!!! 

In Iowa Early intervention was known as Early Access, in Maryland: Infants and Toddlers Program, and in NJ:Early Intervention. The name of the program varies from state, your pediatrician should help you locate the number if you have difficulty finding it online.

Early Intervention is for children ages Birth-3yrs old. After three the child is placed in the Special Education Public School District.  

5) SUPPORT GROUPS.... you will need them! if your town doesn't have one start one! Since Infantile Spasms is rare I expand and speak to other parents that have children with disabilities, we all do go through similar loads of heartache. And since I cannot speak to the other IS parents in person, I tend to go to online groups, too.

The Infantile Spasms Community Discussion Group
https://www.facebook.com/groups/infantilespasmscommunity/

Infantile Spasms Support Group
https://www.facebook.com/groups/ISsupportgroup/

Infantile Spasms

https://www.facebook.com/groups/63670816527/

IS Family Inch-Stones

https://www.facebook.com/groups/126400974159934/


6) Contact "THE ARC" It is a non-profit organization for people with intellectual and developmental disabilities. They have been there for me!!! Amazing group of people. When we lived in Iowa they paired me up with a mentor, she was a professor whose son is diagnosed with Lennox Gastaut Syndrome (many of IS children transition onto that diagnosis), she gave me great tips! The Arc also helps with payments for Respite Services and they have funds available for our children's needs. Iowa helped with $1500 every 6 months and in Maryland it's $3000 every fiscal year.

They also have essential workshops. Now that Aliyah is in the public school system these workshop helps me better understand special education and IEP services.

7) MRIs can be done yearly. After  Aliyah;'s third MRI, finally it was taken as a 3T, rather than a 2T, much more information was given to her neurologist.

8) Arrange a PED. GENETICS appointment. The question why may just be in our children's DNA.

9) Need an ADVOCATE? Having problems with your school or daycare? need reinforcement? Call your local Epilepsy Foundation Chapter. In Iowa I called them and a representative came out to Aliyah daycare center to train them what to do if they were to see a seizure and teach them what to look for since seizures come in different disguises.

10) My best way of coping with the diagnosis is by FUNDRAISING for C.U.R.E. (Citizens United for Research in Epilepsy). More research needs to be done for Epilepsy. Also every year we attend the National walk for Epilepsy all funds go to the Epilepsy Foundation. The Epilepsy foundation is another amazing non-profit organization that need help in fundraising too, they reach out to our communities.

Aliyah with her Grandparents attending the National Walk for Epilepsy in Washington, DC

          

11) MEDICAL WAIVERS.... In Iowa Aliyah was eligle for the ID waiver (Intellectual Disability waiver) income is not an issue and no real waiting list. Here in Maryland most waivers are indeed income based and the waiting list is over 8 years. :/ In Iowa the waiver allowed Aliyah to have a private nurse 40 hours a week and Respite services.

12) Still looking for a MENTOR? you can contact Parent to Parent USA and they will find you a mentor that best fits your needs and child's diagnosis. http://www.p2pusa.org/p2pusa/sitepages/p2p-home.aspx

Accepting Life as it will be...

Sorry I have not been blogging, I guess It's because I have been having a very difficult time adjusting and accepting Aliyah's disability. a disability that I am certain partially stole my daughter from me.
I feel as though I am in a better place,.... Because I am doing everything to get my daughter seen by any and every specialist in order to better understand what the hell is going on.

I am driven on the belief of EARLY INTERVENTION will better the outcome of Aliyah's quality of life.

Currently She goes to PT for 1hr three times a week, OT for 1 hour three times a week and Speech for 50 mins three times a week. I am trying to establish ABA therapy going for her and also trying to fit music therapy to her schedule.

she attends special education, during the school year its 5 hours 5times a week, and goes to summer school 3hours 5 times a week. At school she receives additional speech(1hr/wk) and Occupational therapy(45mins/wk).  She has a augmentative device that helps her communicate.

Aliyah does AMAZING WITH SIGN LANGUAGE, btw.


On Facebook I have been feeling better telling my family and friends more about the current status on Aliyah and where I am with it. But it is a different story telling those same people in person, I get to emotional and cannot finish sentences.

6/14/13 published on Facebook " Soooooo today we went to Kennedy Kreiger Institute to get Aliyah's development evaluated. She is turning 4 in August. FOUR. yet she "scored" around 24months..... and I am okay with that. No, I am NOT embracing it, but okay with it, because she is MY ALIYAH. she smiles... she cuddles... she laughs and giggles.... this little girl is a WARRIOR.... Epilepsy still "visits" her every night, but she has not lost her personality of being a delight. She does have her grumpy days like any toddler.... For example she doesn't want to leave the beach so she kicks and cries and nothing I say will make her understand that its time to go, I do get these eyes looking at me as if I must be a horrible parent because my grown child hits me and cries hysterically, but what the hell do they know right???.... right.... I live in my own little world, and I am learning to be okay with it. Don't get me wrong but I do love the support of family and friends, but unless you lived in "my world" or walked in similar shoes, you will never understand this mom's pain..... Today is a good day because Aliyah laughs and smiles and her little brother is growing up to be VERY LOVING AND PROTECTIVE of his sister who he keeps calling his baby. He loves her and she loves him. As long as my little ones are smiling life is still good and okay:) its amazing when Aliyah excels all expectations and Bruce pushing the child that pushed Aliyah on the playground, lol he is her angel in so many ways."

Publishing that was a HUGE step for me. I am not always open to telling others where Aliyah is cognitively because I was afraid they would treat her differently.

Now for my marriage, its rocky.... Having a child with special needs keeps the relationship tense and unstable, though we do have great days when we both witness Aliyah do the unexpected, overcoming obstacles ... I know the whole saying how "only you control your own emotions" but my emotions to me depend on the type of day Aliyah is having.

My anger fuels me up the most. My anger on "why" did it have to be MY ALIYAH the one to have a severe form of Epilepsy really gets to me. So when nurses do not want to give me an appointment, she can thank my anger when I report her. Or her therapist running late, she can also thank my anger on firing her. And when the pharmacist messes up on Aliyah's medication, they can thank my anger on calling their head quarters to hear my complaint.

If I didn't have my anger I feel as though I couldn't do much. Depression doesn't get you out of bed. Its the anger that makes me feel that " Epilepsy will not win any battles, it can't..."

I do have happy days, they are just not enough to get me pumped up. with time I know this will change...Everything will be okay because my Aliyah be absolutely lead a pleasant and happy life.

I am trying to upload videos of her progress just having difficulty uploading it to this website. One thing that has kept me going is volunteering on anything that deals with children with special needs. My daughter is beautiful and will always have an innocent soul. I keep on telling myself everything will be okay and try to think of today, not tomorrow because I can only take it a day at a time.  

Planning our COMPLETE MOVE TO THE EAST COAST!!

AH! Sooo we are almost done with our move to the east coast so that Aliyah can receive better lifetime care. There is so much to do, I do not know where to begin! I already found where she will be going for occupational therapy, physical therapy and speech, also lined up her pediatric, GI, Nephrology, neurology, and eye doctor,  all that is left finding is her dentist. Why do I feel like I am missing something? ARGGG! I know I am the move is approaching and I am nervous, we have gotten so use to Iowa I think I may get home sick, funny I never thought to call Iowa home when I was raised in Jersey.

Our adventure continues! and I am so nervous! I still want to start the Infantile Spasms Foundation but with this move how am I going to get this rolling?

Aliyah and her little brother, Bruce in a "ehhhh" mood .. :)