I have been up reading some blogs from other parents with special needs kids and they are talking about their struggles with intergrating their children into our society. One father is stating how he and his wife DO NOT take their son out into their community because they are not certain how he would react in public. They gave a couple examples about not taking him out to dinner or to a neighbour hood park, mostly due to his unexpectd behaviour.
Another father posted a comments stating their struggles with taking thier special needs kid out due to the amount of equipment that he travels with and how much space he takes up in places like restaurants.
I want to go back to a time when we were first introduced to our son "being" in a wheelchair. A time when he was trached, NG fed and on Oxygen. When we did travel out into the community, boy...we had an entrage. We did'er up BIG!
It took me some time to adjust, I always kinda felt like we were in the way or inconvienencing others in tight quarters. People trying to squeeze by us, Us trying to squeese by them inorder to use the restroom. My god some moments were difficult, i was always apologizing. Most people were kind and understanding, others at times would be a little rude, slightly inconsiderate. I'd pass by them holding Braden, trying to get by them without disrupting too much of their dinner. Hoping they'll just pull their chair in without hesitation.
LOL..the ones who DID NOT pull their chair in nicely and quietly unfortunately was unaware of the fact that this momma was living with "Post Traumatic Syndrome" and was actually a ticking time bomb. Oh I was all smiles, so polite and giving thanks for all their kindness. BUT if they didn't show kindness and understanding I certainly made sure I "Accidently" kicked the back of their chair on my way back to my table OR i'd kindly make it very loud and clear about how "GOD DAMN" rude this person was to a mom holding her baby. Sometimes yes...the "F" bomb came out! Not my finer moments...but they'd fuckin pull their god damn chair in pretty quick when that happened!
Ya, it didn't take me long to figure out the louder I got the quicker people responded...especially with a special needs child in tow.
This is a very important topic for those who live with similar circumstances. I can't tell you enough how society needs tolearn to live outside of the box!
This poor father explains how he doesn't like to take his child out in restaurants because they didn't call ahead to get a corner table, it just is easier that way for all parties involved. MEEEE on the other hand has learned it doesn't matter if you've called ahead or not to reserve a spot. If you've shown up with your family..your whole family then every one in that GOD DAMN restaurant better do everything they can to make this experience work for my family...because WE have the right to be there just as much as they do!!
Basically that's how i've raised my boy...yes we work as an 'EVIL" team and we have unspoken words between us in situations where someone has not accomadated Braden freely in a restaurant or a department store. Braden has become a master at "accidently" clipping the person's chair leg and pulling out a bit..just enough to get their attention and just enough for the person to HAVE to readust their seating. OOPPPSS...did we just get your attention while you were trying to act like you didn't see us coming? WHoop there we are...MOVE!!! Looks who's apologizing know, because i'll tell you one thing!! It isn't us!!
My favorite is stores that don't have enough room, better move that pretty display over...OR we will..with his 350 pound wheelchair!
It really isn't always easy to get out into society, i can totally relate to some of these families. But as we have gotten older and wiser we've come to realize that anything is possible. People just need to be smart, look around, see how things can work. If we move a few tables, BINGO...easily done! Now there is room for everyone..genious!
I did read in one fathers blog about how he and his wife tend to "stay clear" of public places mostly due to the fact that their child is trached and if there just happens to be a much needed suction or trach change, they didn't feel it was necessary to sit next to others who may be enjoying a nice meal.
I do agree with this statement, HOWEVER where there is a will there is a way!! AND that my friends has ALWAYS been my motto. We have been in this situation, hands down numerously! We have been respectful of others when we were out with Braden during his time of needing a trach, but it didn't stop us from enjoying the exact same quality of life that everyone else was entitled too. SO we found ways to do it! We'd reserve spots in a restaurant that were kinda private area's, OR close to a clean restroom. If there were ever any problem's with seating in a restaurant we'd ask to speak to the manager and in times we needed to pull out the good ol' human rights amendment. Its actually fun to see how quickly people make things work when you know the right words to use. I remember pulling a manager over to the side of a VERY well established restaurant (when we were told, they couldn't get us a private area or room with a wheelchair) my words which i can't remember specifically BUT can assume were close to this (due to the many times spoken) "If you don't accomadate my well deserving 20month old son, and my husband and I..I will stand here and call the newspaper myself with a story that will rip through the hearts of our community and send your restaurant into a downward spiral so deep...you'll never fully recover." There may have been some bad words used too..as at that time in life, like I said living with Post Traumatic Syndrome didn't always provide me with the best coping skills.Once again, it amazes me how quickly things can change...
There are many stories like this that I have not shared amoungst friends or even family, typically it was embarrassing and/or we just wanted to let it go and forget about it. Honestly the usual outcome was a huge apology from the manager of the store/restaurant and we'd just let it go and suck it up. All along though hoping and teaching Braden that this may be his reality so lets "soak this all up" and learn from it. SO that when the time comes and he is an adult and out on his own, he'll have the skills to stand up for his own rights. He was only 20 months old, but I could see him taking it all in.
Bottom line and I guess what I am trying to get at are two things...
1. You never really understand what someone else is going through, unless you have experienced the exact same thing. With that, NEVER assume something about someone else when you are out in public and watching as a family is trying to accommadate their loved one in a social situation. Regardless of how uncomfortable the situation is making you feel...just imagine how "uncomfortable" the family must feel. Remember always that they LOVE there child/sibling more than worrying about what your thinking! I don't care if you are out with you husband/wife on a VERY romantic meal, or out on a date with a "new love interest". If you see someone out with a family member who is mentally/developmentally/physical or even emotionally disabled...DO NOT stare, DO NOT pass judgement and DO NOT make this event for them that much more uncomfortable. YOU need to remember that this may be the only time the family feels strong enough, comfortable enough or brave enough to bring thier loved one out in public for the very first time. YOU my friends can "suck it up" for one meal or outing and smile kindly at those around you. YOU have NO idea what these families face every single day..and remember ALWAYS that is moment for that "struggling" family is about making memories. They deserve just as much freedom, accommadation and privacy as we do. Its ALOT easier for you or I too get out to a restaurant, sports event, shopping or concerts. This may be their only moment, their only concert...it takes alot of courage, determination and love for families to include a member of the family who may have challenging obstacles.
2. The families who I am referring too I also feel the need to share thats ok to go out and enjoy your family, don't EVER shy away from your community or society just because you are afraid to "put them out" by having your loved ones accommadated. Don't ever be ashamed or nervous about going in public, live your life...enjoy your family, make memories! Keep your head held high, smile and educate those who just aren't open enough to see you and your family for who they are!
Never back down from a challage and always remember that your child has the right to the same quality of life that you, I or anyone else is entitled too~
