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?