Wednesday, April 2, 2014

Why I light it up blue for April..for acceptance.

April is Autism Awareness month. During this month Autism Speaks wants people to shine a light on autism (a blue light). I put out of my Autism Speaks sign and put in my blue light on my porch every April but I am not a supporter of Autism Speaks. Many people have their own reasons behind this most of it has to do with money or for many other reasons (but it isn't worth getting into it).  I like to have people donate to local autism charities instead of Autism Speaks. Between DAP and Autism Delaware we get to go to certain events that are tailored to the needs of my kids. So donating money to them would make sure that these events happen for others. So regardless of what I think about Autism Speaks I still follow along with the campaign. I realized though awareness is sort of a silly word....who isn't aware of autism now? Everyone knows about autism but do they really know what it is? Do they accept it? I no longer want awareness...I want acceptance for my kids. I am told the funny looks I get towards my kids is all in my head. I am pretty sensitive to it....mainly because I have gotten those looks all my life. I know I am a beacon for looks but I know when my child falls to the floor and I do my 1-2-3 count (it calms myself and Mia down...and I scan the surrounding to make sure no one gets hurt...I see the stares) I guess I would look too if I saw a child fall to the ground but it is attention I don't need at the moment. It isn't really the looks is the whisper to the friend and the eye rolling after, it is assuming that my child is a brat. It is assuming I am a bad mother. I don't really care what people think about me. I do care what they think about my kids because I won't always be able to protect them.

So what I am trying to say? I don't really know I am sure this will end up being a babbling mess. I love this month. I love all the events people plan just for my kids. I love going somewhere that is tailored just for my kids. I love them being the guest of honor. I love my kids feeling special. I like not having the little extra bit worry of having to leave because something isn't adapted for them. I know the world isn't like that. The world isn't just going to change for them but for this month it does. The lights are dimmed, the sound is lowered and they become the stars. There are still things I wish they could do like other kids but we just can't but I don't feel they are missing out on their childhood. Yes a lot of action and fun is usually jammed into the month of April and I wish they would stretch it out a little...but I can't complain really.

Every moment I wish I could capture. I wish I could just enjoy it forever but that is life and it doesn't stop for anyone. I have missed 2 years of autism walks, I really planned to attend this year, I should but for some reason I never do it. I do the buddy walk and Girls on the run but for some reason something so dear to me I stopped doing. The girls do have soccer but I think Chloe would like the walk a little more then soccer. I really miss all my autism families. You really create a bond even if you don't see each other for a year or know they are there. They understand what you went through and what you are going through. So maybe that will be the moment I capture this walking for Autism Delaware....for my girls....for all the other families.

Wednesday, March 26, 2014


Everyday you wake up with the same to do list. Sometimes you have a few items added but when you are mom you usually have your routine.

6:30am Wake up
6:35am Shower
6:45am Get dressed etc.
7:00am Get Mia dressed, try to wake up Chloe
7:10am Make breakfast (right now they want scrabbled eggs) While Mia eats get her hair brushed, socks and shoes on. Tell Chloe to wake up again if she isn't downstairs.
7:27am Bus for Mia (make sure she has her everything)
7:30 am Walk Pip
7:40am attempt to leave to take Chloe to school
8:15am Work
4:15pm Leave work to pick up Mia
4:40pm Get Mia
5:30pm Pick up Chloe
5:45pm Go home to check homework, make dinner, walk Pip, eat dinner, make lunches/snacks
7:25pm Get baths started
8:00pm Get them to bed walk Pip
8:45pm Breathe and get ready to repeat in the morning

Of course every parent can tell you there is always a wrench that someone throws into your "perfect" routine. Like doctor appointments or snow days. When you have kids with autism and you have to change their routine it might cause a little havoc. You see Mia gets breakfast at school but with all the snow days and 2 hour delays she was eating at home...that became her routine. So now she must eat or she isn't getting on the bus but she also must eat at school (a muffin, yogurt and peaches) because that is also her routine. Now I go through 2 dozen eggs a week...and I am allergic to eggs. It got me thinking about everything while rushing around this morning zipping up her coat....her wishing me a Merry Christmas because it snowed last night.

The routine gets boring...even though your life isn't boring. Not sure if many people can understand that logic. I love that every Thursday I go grocery shopping before work (it is pay day). It breaks up that routine. It is my one day that I get to be around strangers. I work with my family but at the store I can just zone out. I love having those 2 hours to myself.

I just felt the need to look back at this much has changed while so much hasn't. It is still just the 3 of us and autism is a daily "hurdle" in our lives. It is forever changing but always there. I think the question parents always ask is will it ever get easier. I have grown to understand that no it won't. It might be different but it will always be hard. It is a very odd statement to say it was easier when my twins were infants. It was easier for me to get around then....I wish I took advantage of that time to do more.....but I didn't know. I didn't know that I wouldn't be able to go certain places with my kids because it will end with my daughter on the ground having a meltdown. So instead I have to put her in her wheelchair. Not all places are easy to push a child around in a wheelchair. We do a lot though, in April we start soccer again, but it is never easy. I wish I had more help or more money or both...either would make it much easier. But this is our life this is our routine and as strange as it sounds....I still like it.

Sunday, September 23, 2012

Going through the past

On an autism bulletin board I was posting for answers for Mia in 2007 when they were 18 months old. These are those entries. I won't post the answers from others just mine. Please excuse some of the spelling errors etc.

Jan 19 2007

Hi my name is Courtney mother of 18 month old twins. I have been a member for a while but a little shy because I am still really confused. (samling helped me a lot when I first joined) 
I know my daughter (Mia the youngest) is to young for them to state she has autism. But they have come as far as saying in medical records that she has autistic traits. (they claim so she can have all these tests without restrictions)
The poor little thing had to have an MRI done yesterday and it broke my heart. She has therapy 3 times a week (PT,OT & ECD), she has another eeg scheduled, and genetic testing for Monday. 
I know this is all important to figure out why she has low tone, only has 2 words (Hi and in (therapy for motor skills we kept telling her in in), crawl is weak, and just a lot of other issues that I have noticed (biting herself, staring of at corners of the ceiling) 
But is there a time to just say screw it? I want to cont. with the therapy but a I don't like seeing an IV in my little girls arm. I know something is wrong and I don't think it is some mysterious seizures that they claim she might have in her sleep. I mean do these tests really tell them anything? I have planned that after this round that is all, I don't want to put her through anymore. 
Is it possible for her to still be loving but autistic? Granted face touching for kisses are rarely allowed, but hugs are always welcomed. She also lets me stroke her hair and give her compression massages. Are all autistic kids not as affectionate 
I am still really confused and since the Doctors when ever I bring up the A word they get all like no no no no she isn't. 
I am going through the memories to learn more, I seem to learn more about it everyday. I guess I just wanted to say hi and express my feeling of being lost somewhere where people will understand. 
BTW her sister is running and talking and crazy. I love them both very much.

Jan 23 2007

Thank you...
I thought that but the Dr. keep saying that she is so loving that she can't be (but her kisses are like fishie kisses, and her hugs are more like a head butt rub thing) 
Just found out the the genetic Dr. doesn't feel she has anything in that area wrong. Did find out she needs glasses in the near future. Still waiting for the MRI info. But I just feel what other tests can they do to her? MRI's, EEG's, blood tests, urine tests, and review of what she eats. 
But she got a giraffe today after her eye appointment that she likes to rub on her nose.
I feel the twin part is good (because I love them both and they always have a friend) and bad if she ever realizes that her sister doesn't have all these tests done but she does. 
I guess I just believe the gut feeling of the mother is usually the best test ever.

Jan 31 2007

Well now the results for the MRI came back (some sort of demyelination) which could be a metabolic disorder. I don't really know. I have tried to search on it but I really don't know enough (keep getting stuff on MS) 
But who knows....I am waiting for a phone call so I can stop freaking out. It just amazes me how many things could be wrong. 
All I know is in the spring we are all going to Sesame Place to see Elmo. My little girl needs a break.

April 12 2007

Just wanted to add a little update..
Mia is still doing therapy we are waiting for a speech therapist.
We are trying to enroll both of them into daycare. I don't know how I will afford it ($1600 a month) and I make almost $1000 to much for help from the state for daycare. But she is getting on Medicaid..we are waiting for the paper work now. The only problem is since she isn't walking most daycares want to put her in with the infants. She is on the level with some motor skills but I would hate to put her there. 
Learning a few things about her condition I believe she has a gluten intolerance and I found that is normal with autistic kids I don't think diet change is a cure but I have restrict gluten and switched to goats milk and she has been happier and more vocal. The reason for her eczema is I believe an allergy to food (most likely gluton) 
We have been rescheduled alot for an orthopedic hopefully by the end of the month she will see one and get braces for her little legs so she can walk.
So we are waiting for tests again...she has had so much blood work done (for retts and vitamin diffiancy) 
We are also going to get a CDSA in hopes that it is just because she needs vitamin B and has a yeast overgrowth. But it is again just ruling out alot of what ifs to force the doctors to diagnose her.

Sept 9 2007

why doesn't my insurance cover anything that has development delay or pdd or autism labeled on it but they paid for her MRI's which was for her delay? Why do they pick and choose what they pay for? Why even though no one has told me well your daughter has this the insurance company labels her as such? Why do they make it so hard for me to take care of my kids?? Why did it only cost me $50 after my 2wk stay in the hospital due to almost bleeding to death and having to get blood and emergency surgery afterwards....why is it now they won't even pay for a $100 dollar visit???? Now I have my broker working his ass off to find me a different insurance so that when she turns 3 and the state drops her out of that program I won't be stuck with huge medical bills. Why do I keep seeing tons of the support ribbons around now...why did this happen? 
Major mindless one has to answer....I am just frustrated.

Oct 3 2007

Well I think I should update.

Well they want me to bring in her twin to get tested and that is when they have someone there to talk to. My case worker suggested. So yeah I just don't want to burst into tears I mean I am sad but not really (like almost in mourning of a life that I am not sure she will be able to have) and I don't want them to think that I regret her or something. Her father "jokes" about returning her...the worst sense of humor and honestly he doesn't deserve the love that she gives so willingly. It is actually really hard on her sister who hasn't slept right since they told us and alot of temper tantrums. Pretty sure she senses everything that I am trying to push through.

Oct 5 2007 
Mia is now 26 months (but I just say 2 years never wanted to be on of those mother yes little Billy is 78 months old isn't he darling) 
Finally got a close as a diagnosis as possible today with a developmental pedi. she referred us to Delaware Autism Program (DAP). She said she has 3 of the classic signs etc etc. Just what I have been saying but of course was told no no she isn't. Also we have had every test done and everything comes back normal.
Emotionally I am just so beat down. Their father moved out in June, I have been unable to make ends meet, and I haven't had anyone close to me to really understand what it is I am feeling. But I am allowing myself tonite to feel sorry for myself and then that's all because this really isn't about me and Mia isn't any different then she was before our appointment. Our local program has offered be counseling and I think I might take them up on it. 
She got glasses (which she broke in the first month and now we are waiting for them to get fixed) they seemed to balance her. She walks like a drunken sailor and glasses allow her to climb on the playground equipment.
We started the GFCF diet but unable to follow through completely due to her school needing a note for her doctor. For some reason that is taking some time to get. But after a week of limited if any dairy she did independently say woof when she picked up her dog. 
We have also started taking Epsom salt baths. She seems to have gotten different rashes then normal from this but it does seem to calm her down when normally she would freak out after her bathes. Now she will go straight to bed so if anything it has helped her sleep more soundly. 

Oct 5 2007

Yeah I know gfcf is a long shot but like I said before her father and his mother both have gluten issues so it is worth a shot. She doesn't seem to like bread all that much (unless it is covered in butter or cream cheese) the dry texture gets to her. Pasta is her weakness and I have found a rice pasta in animal shapes that tastes like whole wheat pasta to me. I think not having bread in the house will hurt me more.
The only soap I use is shampoo now. Which is needed because she likes the sandbox ALOT and likes to dump it on her head. It amazes me that the aquaphor is the only thing that works (and you know I remember you telling me about the rashes and I brought it up to a doctor once and he laughed at me and said that is the oddest thing he has ever heard...we don't see him anymore) I will ask about the claritin because benodryl doesn't seem to cut it much (there is always this one spot on the back of her thigh). 
and thanks.

Oct 26 2007

We are going to our first appt at a DAN (defeat autism now doctor tomorrow. I hate putting so much faith in something that may not work. I also hate that it will be all out of pocket but if it works.....Alot of patients notice a difference after the first appt. I keep thinking this is how she is stop trying to change improve her. But I just don't want her to be at the 6-9months they placed her at. I am use to her quirks

Nov 5 2007

when she has bad days it always makes her sister act out more. I just hope her fits don't get any worse. I don't think I can make it so she doesn't hurt herself if she amps it up anymore. 
And when you buy clothes according to their fancy that certain month/week/day is that giving in? Shouldn't she be comfy? If cloth on a zipper pisses her off, and layering her clothes makes her rip at them or a normal diaper makes her all itchy shouldn't I just let her be comfy? Is it wrong that I allow her these little "perks" but if her sister doesn't want something on her I tell her she has to wear it? 
Why won't my local autism program call me back?? Why can't I get free stuff? I see parents that have more money then I do carting around the medicaid why do I have to shell out $400 for glasses that she breaks every 2wks. 
Is it wrong for me to say I don't really know my little girl?

Jun 12 2008

I just again needed somewhere to vent my girls will be 3 in July (wow) and today after a few months of concern and me sort of in denial Chloe's (the oldest twin) the(along with a Dr from the local developmental program) agrees that she is very much in the spectrum with alot of her social skills. Which leads them to believe she has aspergers. This really hit me in the gut and I am sort of lost at the moment as to what to do...with Mia I knew what was wrong but with Chloe when I explain what she does to people they just say eh she is a normal toddler. There is a family in my neighborhood that has 3 kids one with autism, one with aspergers... I was so tempted to run over there and just I don't know have someone to cry to that understands......

Nov 9 2008

Not sure where to put this but my daughter has been really doing some odd things lately. More head banging as usual and today she bite me twice HARD and wouldn't let go (she took her sisters teddy I got it from her to give her, her teddy before I could she latched on to my hand) and she is humping stuffed animals now. She wears a diaper so I am not really sure what she is getting from this..but she does it in a sitting position and just rams the poor stuffies. Her eyes cross and she does this even with her car seat on. I am sure it is just so sort of thing that looks like she is humping but it really looks like she does and she does it in daycare at the gym and in front of my family and in front of anyone. I don't know what to do. I hope this phase goes away fast..if not suggestions?

March 22 2009

feels like i have lost out alot of being a mom with a child that still cant say mom...also hate it when people don't believe in biomedical treatment for people with asd 
wish I could have gotten more support but I still feel alone.

Sep 23 2009

Mia peed in the potty last night....still don't think it will happen until another year. I am just tired of diapers. A kids poop is just so much more...well MORE.

Sept 9 2010

I am starting to feel like I shouldn't attempt to take Mia to normal kid activities. When Chloe is invited to a party they invite her sister. I bring all her food with me but I feel like she is so disruptive to everyone else that I shouldn't anymore. Everyone always thinks she is a baby and that her sister is the bigger sister. They are hurts Chloe when they call Mia a baby. But she does wear diapers and insists on using a binky. I can't find any suitable chewy toy for her. I have tried them all. Also since our medicaid is gone not sure what they hell I am going to do about diapers. She is 4 how much longer is she going to fit in a size 6? and how much longer am I going to be able to change her. My nose hurts from a recent head butt, she is just so strong. I am getting so worn out but no one wants to help me. I need a break but I have no one and I am so broke so I can't pay anyone. I am burnt out. I love my girls but I feel like i am failing them. frown

April 25 2011

they put a safety hold in my daughters IEP/displine plan...I totally understand but still really upsets me. She will find an adult say kick and kick. As wonderful as it is that she is talking and acting it hurts. She hurts me daily and I don't know what to do about it. She is so sweet....I just wish she would stop hurting others.

Feb 23 2012

Seriously I feel like Mia will never be out of diapers. She is now 6 she will sit on the potty every hour. She will wait for the bus/car ride or recess to go in her pull up. I feel like when she poops she has to walk and can't do it sitting down (or she feels she has to walk) So she hides. I always get the poo alarm in my head when it is just to late. When I am cooking dinner or helping her sister with her homework or even just in the potty myself she uses those times to poop. Then she will play with it (almost microwaved it once). We always dispose of it properly in the potty. She is learning that is where it goes but just doesn't grasp doing it while on the potty. We even have it in her IEP now. I don't know what to do anymore. I have tried charts, schedules, books, dvds, elmo potty doll, demo with her sister. I am about to take off a month of school with her and just camp out in the bathroom.

Thursday, December 15, 2011

So many things...

Have happened since I last updated back in September.

Mia has learned how to escape from her car seat and many other door locks in the house. (will list all my findings in hopes to help someone). Been an emotional basket case. Not really sure why, but I believe the stress has just gotten to me. Been super busy at work. Haven't found a pleasant happy area to deal with Chloe and all her issues. Basically ignoring severe pain I have in my foot because I know what it is and it would take a few days of no walking and a month of no driving for it to heal....and I don't have that luxury.

Mia and her ability to escape all car seats and seat belt locks. First off we have a britax marathon which is a lovely car seat but it wasn't going to last her much longer and she learned how to undo the harness (the clip and the buckle). Now for you parents that have a child in a five point harness car seat and they haven't learned how to work the buckle yet and you can't afford to go a different route the best solution is the graco chest clip.Graco Clip It is a little harder for those of our kids that don't have a good pincher grip.

After it was determined she wasn't able to be in a five point harness I got a Britax Parkway with the clip that clips to the lap belt. Well she is able to unhook the seat belt so I got this many of the different seat belt locks. She was able get out of them all but this one

But after a week she learned how to get out of the seat belt without unlocking it and still have the lap belt crotch attachment attached. So after all of this I found the EZ-on vest 103z (adjustable vest with back zipper) for family vehicle with tether attachment. I had to change my girls seats around because only 2 seats in my mini van had the tether. Behind the driver and the middle in the third row. Chloe wasn't happy that she had to change on the spectrum become attached to silly things but this was huge for her. We tested it on a trip to Sesame Place and it worked. I still find it hard to get her into it...she squirms. I also keep having nightmares that it isn't as safe as I think it is. It seems like she would get a horrible case of whiplash but I also attach the seat belt through it to keep her locked down. It was a lot of money to get to this point but my suggestions after the five point harness isn't working (believe me I zip tied her into that harness and she still got out...pant less but she was out) get a booster that is latch attached (just so it doesn't fly around your car) get the seat belt cover from especialneeds (either directly or through amazon) then get the EZ on vest. This was you won't have to be in a rush and have to get the vest overnighted and pay twice as much for it. Plus you wouldn't have spent all the other money on covers etc. Although granted every kids is different and also all car models are different. I have a Nissan Quest 2006. 

Now during this and after this as well she was getting into everything at the house. I have all the doors locked with the little hook latch and door knob covers.  My friends get locked into my house and unable to go to the bathroom. I have found some great products on being the monkey tail. If you have normal molding in your house that isn't flush with the door...this is a fantastic product. I am also installing pin locks for the sliding glass door (mine are installed backwards so I am unable to use most locks).
It is hard to stay ahead of your autistic child. They are determined to figure it out. I wish she would put this much effort into potty training.
I have been having a lot of fears of being alone. Not just with dating with friends. I have been feeling lonely and unattached from everyone. If we are home for a school break I can go for days without talking to another person. I know this goes both ways but after numerous times of me attempting to outreach to people I feel rejected and unwanted. I could go out more now but I really don't have anywhere to go. I know I could go to a store and just get me time but it just reminds me that no one really cares. Not having a best friend to talk to that understands me and one that would know how close I am to just falling flat on my face is hard. I don't have a spouse and their father is going into his 4th rehab of the year. I try to look strong and I try to just ignore my personal feelings but some days I just can't. I should be better soon...I am sure I will be. I don't really allow it to get to me to much because then I can't be a good mom but I just get so caught up I forget...I am still a human and I can't always do everything on my own.

Thursday, September 1, 2011

Potty training and new school year

I dream of the day that I can end potty training. It took Chloe longer then most and with Mia I am still at it. She enjoys sitting on the potty (and at times going on it) and now she likes to take off her diaper and dump everything in to the potty (making a huge mess). So she understands that is where it goes and I know she knows she has to go. (she likes to hide in her room) So I have now put locks on all the doors so she can't hide. I am hoping this will have her ask me for the potty and go on the potty. We will see.
I am still waiting for our medicaid diapers. I have broken down and signed us up. I can't keep buying the diapers I prefer for her. Hopefully this doesn't end in some crazy chemical burn on her butt.

They started school this week, which is always challenging. Getting back to our normal schedule will be lovely. I can start going to the gym again and getting some mommy time.
I have yet to meet Mia's new teacher which is weird. You give your child over to a stranger and in her case a whole group of strangers. I also hoping when it comes time for the parent teacher conference I am able to attend.
Chloe is super excited this year, because she gets to be a lunch buyer once a week. We are now getting food stamps which allows her to get free lunch at school. But since it isn't the best food (at least for ASD kids, who are sensitive to foods that aren't organic etc) I am allowing her pizza day. I mean what kid didn't enjoy pizza day? I did tell her to gift her milk to someone that wants it. The less hormones the better. This is a huge step for me. Allowing her a little bit of normal.


I then went back and looked at Chloe's first day picture last year. My goodness she has grown and you can't tell but also wearing the same socks. Which she HAD to wear this year but I didn't notice until afterwards that they are the same.

I know all parents go through the oh my it was only yesterday I was holding them in the hospital. But seriously this needs to slow down a little. I really hope for a better year then last for their school. We hit a lot of bumps but hopefully not as many this year.

Thursday, July 21, 2011

an infant trapped in a 6 year olds body.

With the girls birthday coming up I have been shopping of course for presents. Chloe is very demanding for presents basically she wants everything. I have a list a mile long for her. I told her max would be 4 presents from me. So I hope that I don't see a tantrum. With Mia....she never asks for anything for birthdays or holidays. It is what I pick out. She loves Elmo to death (as do most autistic kids, I assume it is the bright red fur) So we are still stuck in baby toy central. I never know what to get her because she has everything in her age range of interest. She mouths everything so I keep with the under 3 y/o toys because of that.

It isn't just the toys it is her speech of course is babbling with some words thrown in there. Plus she squeals and hoots just like a baby would do. Plus she wears diapers and I have to carry a diaper bag still with us. I catch myself baby talking to her all the time. Playing peek a boo. It is like she is stuck in this forever infantile stage. People always assume she is younger, even though she is the taller twin. They get amazed that they are twins.

I can't change this, it is beyond my control, but it was something I was thinking while I was driving and cooing at her. I should treat her more like a 6 year old child then a 1 year old baby is hard. I notice I do limit her with her abilities so I have to let go of my tether a little.

Tuesday, July 5, 2011

Do you see what I see? and if not why not?

As a mom we look at our kids and most of us see them as perfect little beings. Of course they have flaws, they are human after all. But as a mom you see the big picture. When I see other kids I sometimes see them as invading our perfect little bubble. They are filling my children's heads with cheetos and terrible pop music.

Anyways I see fathers with their kids some are how I would expect them to be and others just don't have that connection. Why don't they think of their kids at every waking hour? Is it because we carry them for 9 months and we are just connected at a much deeper level? I have given the girls father chances after chances to be in their lives. He doesn't deserve these chances but they do. They deserve to have the total package. Instead they have a father that choices his vices over being in their lives. Why doesn't he want to see them wake up everyday and go to sleep every night? I don't get it and doubt I ever will. I am always asking WHY? to him and I never get an answer. He tells me he loves them but it doesn't reflect that.

People tell me how strong I am, and I tell other mothers how strong they are and how much I admire them. I never see what I do as anything special. I do what I do because it has to be done. If I don't who will? It is my job as a mom. I sit here while Chloe is here at work with a tummy virus. I live breath motherhood. It is the hardest lowest/highest paying job. But I suppose getting told you are awesome is a fantastic boast. It still gets me everytime with a what really? me? but every mom that does her job as a mom deserves a good job. Honestly though when you get that little hug it sort of says it.

My stress level is high right now. It is a combo of sick kids and the ex issues. I am forever stuck in a limbo. Wanting a release that isn't available. Someday I will have time to breath to relax or that is what I tell myself. I have thought about the possibility of starting to date again...test the waters. But I always think this and pull back in fear of someone not understanding. People can't understand when a parent is truly alone. They assume that the other parent has to be there or they have to have someone to lighten the load. But I don't really. So it is easier to say I want to but it is easier to not totally do it. I feel it is easier to blame my kids/life then to look at my actual flaws as something that needs to change.

Another thing I would like to state. We went to a minor league baseball game on Friday (the Blue Rocks). We took Mia's wheelchair. I have noticed people tend to understand more when Mia is in her chair. When she isn't people look at us like we have horns on our heads. When we have the wheelchair we have people parting like the red sea. It amazes me. So get yourself a wheelchair for big events like this because people tend to only relate to true visible signs of disabilities. Plus it carries all your food/diapers/etc that you need instead of strapping it to yourself. I love our chair it gives us freedom and now understanding.