. unexpected insight and helping hands

Something was said to me this weekend that really got me thinking and out of my own head.  First, let me set the stage a little bit for you.

Every year since I can remember, and even before then via pictures, my family has had a family reunion.  It used to be a HUGE affair with well over 30-40 people from my maternal grandfather’s side of the family.  We looked forward to The Rose Reunion every year on the 2nd weekend in June. Life stopped for this weekend.  It was an event you simply DID NOT MISS.  I usually missed a softball tournmanet that weekend because of it.  I hated that as a child, but I applaud my mom for making me go, sometimes kicking and screaming and sulking so that I could spend time with my cousins.  Slowly but surely all of the oldest generation that held these reunions passed on and it was left to our parent’s generation to keep up with the tradition.  Well, we haven’t all been together like that since I have been an older teenager.  Not for lack of trying, but for some reason everyone became too busy or schedules couldn’t be arranged etc.  So, my smaller extended family “The Curtis Rose Clan” started our own tradititon “The Rose Roundup.” It has the same premise, every year on a specific weekend the aunts/uncles and cousins from my grandfather’s children get together to have a weekend of family, fun, and relaxation.  Well, for anyone with a SN kiddo knows.. these types of weekends are rarely fun and DEFININITELY NOT relaxing.  However, over the years, and this year especially, that changed for a little while for me and my little human.  It was at this time that I realized that some of the stress and “non-fun” times we had had in the past were actually my own fault and of my own making.. let me explain.

The “thing” that I was talking about earlier that was said to me was a very inspiring and thought provoking thing.  A cousin of mine, Sean,  whom I have the UTMOST respect for, told me that he had been reading this blog and that he was glad I was writing it.  He said that he had never been around or dealt with anyone like my little human before and had gained a whole new perspective on the subject of special needs parenting.  (Now, I am paraphrasing because I was so touched by what he was saying and that he had actually taken the time to read my writing that I can’t remember the exact wording he used) – This is a man whom, along with my oldest cousin Julie, has raised/is raising two incredible middle sized humans.  They are kind, gentle, wonderful, and respectful people  and I am SO happy to call them family.  To hear those words come from a person that has themselves raised such remarkable little people was inspiring to me.

As he is saying this, I was actually sitting in an outside chair with some of my other family members because my other cousin (his wife) had taken my child out to play and run with the other kids.  She asked me if she could take her out to play and was met with a resounding YES AND THANK YOU! My immediate and extended family knows that my little human is “different” and the adults know she is special needs.  When we are altogether once or twice a year someone steps up and asks if I need any “help” with her.  Usually if husband isn’t there to “trade off” duties with then of course I need help, but up until this year I have usually if not always said no.  I have always been in the mindset of “she is mine to handle” and have not wanted to “put her off” onto anyone else, they have their own families to keep alive lol.  This year and those words changed that for me.

I have had many discussions with my cousins, aunts, and uncles about my daughter.  My frustrations, my joys, her successes, what she needs, and HOW THEY CAN HELP.  the only problem was, when they would reach out to help, they were met with an “I’ve got it” or a “no thanks” etc.  This year, even for a short time, things changed for both of us.

We drove the 5 hours to my aunt’s house where we would be staying then had to wait another 3 hours until we were to meet up with everyone else at my cousin’s house.  My aunt made sure that we had a room for ourselves where I could lock the door to help corral little human if/when we both needed a break.  I found that incredibly helpful and thanked her for it. She said it was nothing, but thought that room would be best because there wasn’t anything she could “get into” and it would be easier for us.  Helpful thing #1 of the weekend.  Within about an hour we had gone into the room and had some downtime as she was starting to melt down.  How thankful I was to have that blocked off space specifically for that.  She also let me go around her house to “little human proof” things like ceramic birds on a shelf or magnets/paperwork within her reach on the refrigerator, and glass protectors on table tops.  No judgements or sideways glances or “no, she should just know not to touch it” types of remarks.  I attribute this to my having an open conversation with her beforehand as did my own mother about little human’s needs and that she still has the mind and input of a 2 year old.  Thank you Aunt Norma & Uncle Johnny for those things, those small acts meant the world to me.

Once we were at my cousins house, it was getting time to eat so the food was coming out and getting put onto the counters.  I could see disaster already brewing as she likes to pull down ANYTHING from the counter she can get her hands on.  She also found the bar stools to climb up on.  My cousins IMMEDIATELY asked if they needed to move or put up the bar stools to help keep her off of them and safe.  I was able to say no to this one because she is used to being on them and can manage them safely.  However, it was still an incredibly nice gesture and one I am also thankful for.  Next came the food.  I mentioned that little human could “reach” all of the food on the counters, everyone jumped into action and moved all of the food out of her reach!  Again, no judgements or sideways glances or “she should just learn” things being said.  This small thing of just helping me move food back almost had me in tears because they were truly trying to help make my life a little easier while we were there (and I’m sure they didn’t want the food dumped onto the floor either,) but instead of me having to run around “house proofing” they jumped in to help where they could.  They had also blocked off the stairs and didn’t allow ANY children, even their own, up the stairs so that my little human wouldn’t try to go up there with them.  This forethought and insight for my little girl and the other smaller kids was fantastic and I am so thankful for that.

Once it was time to eat, they let me make a plate and even gave me just bread and cheese for little human to eat because that’s what she was screaming for.. cheese sandwich.  so, without a blink of an eye, cousin Julie grabbed some bread and cheese and let me make a sandwich from her own pantry.  She didn’t say “oh well we have all of this other food here, she can just eat from that” or something equally as hurtful and unhelpful.  Nope, this is what you need, here it is for you.  What else can I help you with.  Do you know how inspiring, helpful, and incredibly …I don’t even have the words actually.. it is to have someone who isn’t in your day to day life say “how else can I help you” – It was incredible and I could actually feel a piece of my heart get sewn back together.

Once it was time to eat and everyone was sitting down, little human was going nuts and trying to grab things off of everyone’s plates, so that OBVIOUSLY wasn’t going to work.  So, my aunt kept an eye on little human for me, I made us both a plate and actually snuck off to my car!! I strapped her in her car seat to keep her contained, turned on the air conditioning, and ate our “dinner” outside in the car.  It was quiet, comfortable, and we BOTH got to eat together without me having to run around chasing her and neither of us actually eating anything as is usually customary during any type of “group” dining experiences.  To make things even better, someone actually noticed we were missing and came to check on us to make sure we were ok!! To be missed is sometimes a good thing, it means that your presence is one that is wanted and missed when it isn’t there. I actually had a good cry after that one!  Once we were done and my eyes weren’t puffy anymore, we headed back inside.

Most of the girl kiddos were in the back room playing “dress up” – Oh God I thought, we’re gonna be stuck out here by ourselves with me trying to keep her from hitting things, going outside, sticking her head in the toilet, etc.  INSTEAD my cousin asked if she wanted to come in and play dress up with her cousins & that we could lock the door to keep her in if we needed.  Seriously?! someone was asking my child to come and play knowing she was going to be loud and obnoxious and running all over.. helpful thing #4 or 5 of the trip thus far.  So we did.  And below is the result.

This is my little girl playing dress up and HAVING FUN with her cousins just like any normal kid would.  For those 30-45 minutes, she was not a special needs kiddo.. she was just my daughter having fun trying on and playing in princess dresses.  She even held hands with some of her girl cousins to try and get a picture together. That’s the photo on the left.  I can not even being to tell you how this melted my heart.  None of it would’ve been possible had my oldest cousin not thought to ask my daughter in to play like we have wanted to all the time.

After dress up time, all the kiddos were going outside.  They live on a semi homestead and had some spots where the fence was wired up but not actually put in place yet.  I was terrified of little human going outside and getting hurt.  What did my family do?  They offered to take her outside and play/run around with her so I could catch my breath and SIT DOWN AND RELAX for a few minutes.  More tears and thank you’s ensued.  I ended up outside as well, that is when the above mentioned conversation happened and I was left speechless.  Sean (cousin from convo earlier) also said that it seems easier with physically disabled people/kids because you can actually SEE that they have a disability. however, with kids like mine, there isn’t something tangible to see that something is wrong unless you are around them enough to know.  that hit me hard as well.  Sometimes people see my child and only see a discipline problem.  They don’t understand that she can’t be in a loud & crazy supermarket or play place for more than 10-15 minutes before she gets overwhelmed.  They can’t see that she its and screams because she is so frustrated that she can’t be heard or understood and express her wants and needs.  I have decided that it is up to ME to explain these things to people.  After the conversation, they were talking about his son being an incredible baseball player and that he was just moved to catcher.  They told him that I was also a catcher, and he asked me if there was anything I could teach him about it.  I lit up with excitement more than he did! I looked around and my little human was running around the yard with her cousins and being watched by my older cousins so I got a good 15 minutes of “baseball talk” and teaching drills that I never thought I’d get the chance to do.  Even though it wasn’t with my own child, it filled a need and want in my heart that I didn’t even realize was there.  All the while, my daughter is running around having the time of her life chasing and being chased by her extended family.  As the night time melt down started (we were 2 hours passed her bed time) everyone said their good nights & that they were excited to see us tomorrow.  Excited to see us.. to see and spend time with my little girl and myself.  tears.

the next day (today) was swimming day.  my other cousin Jeanie and her family have an inground pool at their house, so we all went over there to go swim.  My little human is a water baby and LOVES being in the water, so I figured it would be a smooth day.  Well.. um.. nope.  after 10 minutes in the pool she was “all done” and wanting to go inside.  This was not happening.  So we kept on keeping on.  She finally found a dolly to play with and seemed content to float and “swim” and “kick kick kick” to keep herself occupied.  Jeanie could see that I wasn’t getting to have much fun because I couldn’t swim off and leave little human to her own devices, so she offered to get in the pool with her so that I could have a few minutes to actually swim and play with my smaller cousins, niece, and nephews.  once again, instead of saying “no, I’ve got it” I said yes, and thank you so much. My cousin Salena was sitting on the edge of the “spa” pool where the smaller kids were playing and offered to help corral her and not let her get outside of the pool where she would run off. The kicker was that they were happy to do it.  Happy to lend a helping hand because they knew I could use one.  Because of them and my other family members, we stayed in the pool swimming and hanging out for a good 2 hours.  My little human PLAYED with her own cousins just like I had grown up with mine.  Now, it looked a little different, but she was actually playing and splashing and playing dolls and following some of her cousins around (or trying too at least!) and it was the most remarkable thing I’ve seen.  I attribute this to my being able to be more relaxed with a little bit of help when I was feeling overwhelmed and felt like neither of us was having any fun.

once we got out of the pool for a watermelon snack, I knew it was time to go.  little human hadn’t slept much the night before and neither did I.  Plus, once she is out of one environment then it’s all over and she needs to move on to the next.  Since all the other kids were getting back into the pool and she was already out and “all done” it was just a good time for us to make our exit.  My family understood and seemed genuinely sad that we were going.  My cousin Julie actually carried little human to the car, my aunt and other cousin. Jeanie gave me big hugs and thanked me for making the trip even for the short time we were able to be there. They acknowledged the effort that it takes to make this kind or any kind of trip with my SN kiddo.  Having that acknowledgement made known to me was beyond any emotion I can explain.  Every year I hope we get to stay longer.  Last year it was just 1 day.  this year it was a day and a half.  hopefully next year it will be the full 2 days, but we will see.  I will continue to do whatever is best for my little human, but I can tell you that I couldn’t have done most of it without the help of my family this weekend.  Thank you all from the bottom of my heart for helping both me and my daughter have an extremely fun and somewhat relaxing day and a half.

With all of that being said.. people and families with special needs children .. SPEAK UP about what it is your child needs in a specific situation like this one.  I have found that most people simply don’t know what to do or how to help or how to handle a SN child.  IT IS OUR JOB as their parents to tell and explain to others how they can help both us and our children.  It is NOT someone else’s job to anticipate your and your child’s needs.  How can we be spiteful to anyone, family or otherwise, if they do not know that our child is different, has different needs, and will react differently in a given situation.  Instead of blaming them or getting your feelings hurt or not knowing what to do, have a plan.  Take a few minutes at the beginning of the “event” to explain your child, their differences (especially to other children), how to interact with your child, and how you could use some help to make the event more pleasurable for both you and them.  Give people a chance to help you.  That was the biggest lesson I took from my weekend (well.. half weekend) with my family this year.  GIVE PEOPLE A CHANCE TO HELP YOU once they understand the situation that you are in.

Friends and Families of people with SN kiddos.. If you don’t know something, PLEASE ASK! a child may be on a special diet or need a certain type cup or not know how to feed themselves.  Ask the parent’s what you can do to help ease the burden and stress for even a few minutes while the event or family thing is going on.  Offer to help them play a game or sit and read a book or play dress up or simply run around outside.  Let the parent know that you are genuinely wanting to help, but that you may not know what “help” means to them. For me, it’s allowing me to little human proof a house the moment I walk in, locking all outside doors, and keeping food and breakable things out of her reach.  everything else really is just icing on the cake.  I had a lot of icing this weekend and I want to publically THANK YOU ALL for helping to make that happen.  Was it perfect, no.  But it wasn’t awful or even bad.  we had a good, mostly fun, weekend and it was a first for us.  I can’t wait for next year to see how far little human has progressed and to be around a family that loves each of us and continues to amaze me each time we are all together.

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