Cover Boy

It was so exciting to have Silas on the cover or our Montgomery Parents magazine this month.  September is there annual issue dedicated to Special Needs.  When asked to write about what it's like to be Silas's mom....I jumped at that chance!  Here is the unedited version of what was published.

I used to be known as Anita McFarland.  Now I usually am referred to as Silas’s Mom.  Being “Silas’s mom” has changed my life.  I used to walk into a room with a quiet anonymity.  I’m no longer a mom who can blend in with the surroundings. I enter a room chasing a boy who commands the entire room’s attention. Some days that entrance looks like a train wreck and being Silas’s mom is hard.  He wriggles out of my hands or arms and runs wild anywhere we might be… including church, the doctor’s office, or the bathroom at baseball games.  He yells things that I can’t understand.  He runs up and hugs random men or women on the street or in a waiting room, whether they are creepy looking or not.  He flops himself on the floor and uses the full weight of his body to communicate to me that he IS NOT moving another step.  He runs a fever for no reason, he sometimes will have a random unexplained bruise, or a cough that lasts for 2 months straight, causing me to wonder and worry and have sleepless nights.  These days are the days that WEAR. ME. OUT.  These days are magnified by the responsibility of raising a child with a “special ability” (as my daughter describes special needs).  I, daily, feel the weight of showing everyone around me that Silas is just like their children.  I want everyone that comes in contact with him to know that Down syndrome is not strange, scary or all that different than any other typically developing kid.  I want them to know that when he acts “rotten” it’s because he is rotten not because he has Down Syndrome.  These train wreck days make that difficult until I remember that I had those same days with my other kids.  They had the same “rotten” days.  The only difference is that others didn’t excuse their behavior to a disability that they could see.

Then there are days that I enter a room with him and I am reminded of how special it really is to have Silas.  These moments and days are filled with kisses, spontaneous “I Love You”s and reaching goals that we have been working on for days, weeks or months, hearing Silas say his brothers and sister’s name as he acts like a typical baby brother.  Don’t get me wrong, my other kids and all your kids that were born without uncertainty, without complications, and without special needs (if there are truly children born like that), but having Silas in my life makes this life and my family …. more.  He adds a joy that can not be explained or put into 400 words or 4 million words.  There is something magical or spiritual, I would say, about loving and being loved by a child with Down Syndrome…. or autism, or cerebral palsy, or any other disability.  For all the times that are filled with stress or anxiety, there are 10 more that are filled with excitement, peace, laughter and indescribable love. 

Silas has has made me feel scared, unsure, crazy, scared, worn out ….. He has turned me into an advocate, made me feel loved, known, more compassionate, patient, joyful, and has shown me strength and determination. These are only needles in a haystack of what this 5 year old little boy has given me.  I would be shirking responsibility if I did not say to the eyes, full of pity and sorrow, who see a burden or a waste of a life or even indifference.  I want to be clear.  Silas, and all those with differences or disabilities, are important, not only to their moms and their families, but to the culture and the world.  These people, these individuals, fill this world with love, beauty, grace, and compassion.  These are all things that we will ALWAYS desperately need.   

I will gladly give up my name for that.  Love, Silas’s Mom

Silas stuff to remember....

This is a common scene in our house, Mamaw's house, the car and even the driveway.  Seeing Silas draw so intently is one of my favorites.  He will sit for over an hour, sometimes, just drawing.  He fills pages and pages with his little creations.  He once sat for an hour and a half in the driveway and filled 3/4 of the driveway with these little pictures using sidewalk chalk.  I love seeing a glimpse into his creative mind.  I wish I knew what it all was... I will have to wait a little longer before he can tell me what each line, circle, squiggly represents.  When that day comes I promise I will sit for just as long listening to every detail of his explanations.  My whole being smiles when I see him like this.

However.... it frowns when it goes from this to the second hour of drawing on his entire body, just as detailed.

Conversation with Seth....

Lying in bed just after singing and praying...

Seth: I think my 3rd nipple popped.

Me:  really.

Conversation with Seth....

We have the day together today... which means, Seth is the sweetest boy in the entire universe!

Anyway, we were throwing the football to each other outside.

Seth: Mom, I love throwing the football, but baseball is my passion.

:)

Spread the Word to End the Word

There is a recent disturbance in the Down Syndrome community about a comedian who has disrespected this community... my community.  And although, I'm not in the business of censoring comedians or any other media, I will say how disappointing it was to read the transcripts of the show and see how he really pinpointed people with DS and belittled them.  My feeling and call is to educate.  This brings me to my week.  I was disappointed again yesterday.  I substituted in a classroom of children.  I was not shocked by having to correct 2 kids for using the word retarded.  They are kids and have a to be told and a lot of times reminded when they are out of line.  Easy.  I was not shocked by some of them giving me some argument back and trying to talk their way around what they actually "meant" by saying it.   They are kids.  However, I was shocked by the response of "I'm allowed to use that word" or "my parents let me say that".   Several students clearly and loudly let me know that using the word retarded was perfectly acceptable by their parents.  Now whether that is true or not.... But it did alarm me enough to but my fingers to the keyboard to do my part in letting my small part of the world that my blog and/or Facebook account reaches that.... NO.  IT IS NOT ACCEPTABLE TO USE THE WORD RETARDED IN 2018.  I don't know why people find it so difficult to understand or believe this.  Maybe because we are so bombarded today with being politically correct and people are rebelling.  I don't know why I would rebel against showing love and support to any group of people.  So to be clear, again.....


My son has Down Syndrome. (you may also call it Trisomy 21)
My sons' friends also have Down Syndrome.
My sons' friends have Autism.
My sons friends also have other various mental delays or disabilities.
The person at the check out line in the store has a disability and is working hard to earn money and worth.

My Silas and his friends do NOT have a 30 year, outdated term that has been abused and twisted to fit in with being rude and to make fun of songs, movies, situations, or PEOPLE!  

Unless you are referring to the tempo of a piece of sheet music, which is a VERB not at noun..... DO NOT USE THE WORD RETARDED OR RETARD AND please go home and let your children know that they are not to use this word either. Now, if you read this and panic that your kid said this to Ms. Anita in class!.... let me assure you that I know that you likely, do not "allow" this talk in your home.  But it may be that you could reinforce what I told the class and that is .... first, It is NOT allowed in my class... and the term is exclusive. It's offensive. It's derogatory.

It is hurtful to me.
It is hurtful to my children.

IT IS HURTFUL.... not funny.

IT IS HURTFUL.

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Seth Saying Risk....

To Lily......

"ooooo..... you just got whooped by a boy!!!!"

It's been a good couple of days....

You never know how your words may change someone's day.   I've had 3 blessings of words in 3 days.  The kind that I can't stop thinking about and will probably be able to live on for a while now.  Two of them have to do with Silas... which makes me think.  They are words that only have this effect because it was said to a mom of a child with special needs... I say that because the same words, I wouldn't think twice about if it was said to any of my other kids.

This mom had no idea....

It was at a typical taekwondo class... well not typical so much because Silas did awesome, no time outs, he barely gave his super, patient instructor a hard time.  A woman who has two girls in his class came up to me and asked me which class Silas was going to go to next, because they just tested and have other options for class times.  I didn't think much about it because I usually wait for the instructor to tell me which class would be best for Silas because I don't want him to be any more of a distraction than he has to be for classes.  Because although Silas is doing well in TKD, it has taken him a long time to make his little bit of progress that he has made.  He tests ALLthe young people's patience that work with him during every class.  I know it's obvious with the other boys in class whisper to the other kids, "He's in time out EVERY CLASS."  :)  
He has been with these two girls, in particular, for several months now and he knows them and they are very sweet to him.  After their mom asked me and I didn't really give her a clear answer, it became clear that she wanted an answer!  She told me when they would be in class and began to say,  "I want them in class with Si."  I gotta say, I may or may not be crying as I write this... That simple phrase made my whole night.  This mom WANTED to be in my boy's class. The same boy, that at times, distracts her girls from learning, that, at times, runs crazy across the room and has to be refocused back to the class... again, taking away from her own girls class time.  After telling her that we would definitely be in the class they were in, I went straight to my car and.... called my mom to tell her. :)  She got it... she was just as excited. :)

So that's it... that's all it took to give me this extra encouragement with this little boy that I love so much, but am often discouraged because it takes so much repetition and consistency (that I don't always have the energy to give him) to discipline and train.  Some one wanted to be with him.  That's what I want for him!  I want kids to like him.  I want parents to look at him with gladness and not pity or resentment.  We sometimes get questionable looks when we go places.  It can be disheartening at times and other times, irritating.

This simple conversation made up for all of it.  <3 nbsp="" p="">