There are some odd things we do as parents of littles with special needs. I guess they aren’t odd to us, but they might be to others.
Imagine big heaving breaths with this face. Repeat.
One of those things that I find myself doing lately is celebrating the typical. Specifically, celebrating when my son (who is 3.5 and has Williams Syndrome) has an all out, house shaking tantrum. Now let me preface this by saying, I do not “enjoy” his tantrums. I get just as frustrated as the next mama who doesn’t like to a. see her child cry, and b. wants him to get his act together and realize the world is not ending because he is putting pants on.
I celebrate that he is being a three year old. That he is expressing his frustration over whatever is bugging him at that moment. Lately it has been wearing clothing. He acts as though you are putting acid covered knives on him when you get him dressed. Have you seen this? It is pretty darn accurate. Albeit slightly creepy but so accurate nonetheless.
Another tantrum he likes to throw is The-I-Want-Dinner/Breakfast/Snack-Now tantrum. I get home from work, and he meets me at the playroom door and his arms go up lovingly and the first thing he says is, “Dinner?” (at 4:45 pm mind you…..) And then sometimes for the next 45 minutes as I try to unpack from the day, and get dinner ready, he will climb into his chair in the dining room and whine and cry for dinner that is taking way too long for his liking.
Yes, my shoulders might tense up in frustration because I wish he would just understand that things take time, and that mommy can’t have everything he wants for him immediately…
I realize, my son is doing something that most toddler-preschoolers do. Not because he has a genetic condition. Not because he can’t express himself otherwise due to language delays.
Just because he is young, and because that is what they do from time to time.
And sometimes, it is nice to experience things that happen just because. They do not happen because of a label, a diagnosis, or a delay.
I hate pants.
I better go prepare myself, time to get him dressed. Wish me luck.
The irony is not lost on me. My son has special needs and I have been a special education teacher since 2000. (with a two year break in there after having Evan) I also have my certification to be a Learning Disabilities Teacher Consultant. (the learning consultant on a child study team)
I taught for 11 years before having my son (now three years old) and all of those year were spent with elementary school age children with varying degrees of need. Whether I wanted to or not, I gained a truckload of patience that I didn’t have prior to being a teacher. I learned how to see the talents in a child, rather than focus on the deficits. I learned how to pick my battles with oppositional students. I discovered that a huge part of being an educator is the relationships you develop with the parents of your students. It has never been my strong point, contacting parents and having difficult conversations about their children. I tend to avoid confrontation and I have never felt confident making those difficult phone calls. Even when I know my points are valid.
But I never imagined how different I would feel when I sat down this past spring to write an IEP (Individualized Education Plan) for one of the students I teach. I hadn’t written one since the months before I delivered Evan. I typed up a sentence about this particular student, one that described his dependence on his teachers and one of his weaknesses. After my fingers clicked away, entering the sentence into the system, I found myself feeling uncomfortable. I reread the sentence approximately five times. I realized that I was trying to imagine what I would feel like if Evan had that sentence written in his IEP. Would I appreciate the wording? Would I agree with the observation? Is it necessary?? Here I was wearing my teacher hat, but my mama bear hat was sewn into the brim and there was no stopping her. And this same feeling occurred with each IEP I wrote. I thought longer about each objective. I scrutinized each comment. Was I being thorough? Is the objective measurable and clear?
I also found myself feeling more guilty when I would become frustrated with one of my students. After giving the same direction numerous times, and day after day needing to give the same reminders, I found myself becoming short and visibly agitated with one of my students. This particular student is not easily ruffled and it didn’t seem to phase him one bit. Which of course led me to feel more guilt. I can remember sitting at my desk eating my lunch and thinking, “Erin, that child is doing the best he can with what he has.” and my next thought was, “God, please let Evan’s teachers realize that about him.”
“Please let him try his best, and let his best be enough for his teachers.”
One of those moments where you feel like Oprah should appear in the doorway saying, there it is! Your AHA moment!
I need to listen to that little voice inside me that prayed that Evan’s best would be enough for his teachers at school. I need to accept Evan’s best efforts as well. Not to say that I should not have high expectations for him and help him to strive to rise to the occasion. But when he does, when he is trying his very best to use all he has to accomplish something and it is just not working out the way it is supposed to….I need to realize that it is enough. His effort is enough. HE is enough. The word combinations he is making today is enough. The attention span that causes him to flit from one activity to the next- it is enough. The sensitive hearing that has increased in the past month, it is enough.
I just don’t want him to lose his spark.
zest for everything
Please let his teachers fuel the spark. Inspire him to try his best.
So I sit here in quiet. Beautiful, thought-provoking quiet. I used to lament the fact that I never had time in our house by myself anymore. Todd and I have always been good about letting each other have our “me” time, whether that means going to an exercise class, going camping, blogging, out with friends, etc. But just by the way of scheduling and being a mommy- I never got the house to myself. Well wouldn’t you know it, going back to work actually provided me with not one, but two days where that happened. Even if just for a short while. It’s weird, I keep thinking I hear Evan on the monitor that isn’t even turned on. Since I am a teacher in N.J, we still get off for the annual NJEA convention in Atlantic City. This year since there was an election for governor, we also got off on election day. I decided Evan could still go to school, since he loves it so much, and this way I would get more done.
So I decided to spend election day working on insurance phone calls and paperwork that had started to pile up. In my crazy little head (actually the Gaynor cranium is not a small one), I had thought it would be a great day. A day that would clear my mind, and get all that insurance stuff off of my shoulders and some more money in our pockets from reimbursements to come. Oh Erin, silly, silly Erin. How quickly you forgot how incredibly frustrating it is to go through menu after menu of automated voices. How infuriating it is to speak to four different people at the same insurance company but only one of them seem to have an idea of what is what. How emotionally exhausting it is to realize how many therapies your child receives and how much it all really adds up to financially. And honestly, we do not have it that bad. I know our situation could be much much worse. But Tuesday afternoon, after about five hours of sitting at a laptop with two different phones and bills strewn around me, I felt myself start to crumble a bit. I popped on the beautiful piano music of AlecSweazy.
Can’t you see Evan in his kind eyes and smile?
I felt myself relax and the tears flowed a bit. Not in frustration though. In appreciation of Alec’s talent and hope for Evan’s future. Alec also has WS and he is handsome, talented, and honest. On his website he mentions the meaning behind some of his compositions. He says this about one song:
I’m Still Standing — “As a student in elementary school… being treated like a scab… other students picking on me and beating me up. It hurt a lot. I tried to let people know of the threats, calling me names, pushing me down stairs. It was like having monsters with laser beams for eyes coming after me, destroying me from the inside out.”
Of course this tears me up from the inside out too. Some of my worst fears are of Evan being teased and bullied.
But then he also writes this about another song:
Long Time Coming — “This project. To have goals for yourself in life… and the CD is probably the biggest thing I’ve done in my whole life. I’m pretty sure I haven’t done anything that takes so much patience, doing things over and over again. To keep it moving takes many steps. Many people are needed to get a big project like this off the ground. Who would have thought, after the variety shows in junior high school, that this is where I would be now?”
Thank you Alec. Thank you for sharing your talent and your honest feelings. It scares me, but I know not to be driven by fear. It will get me nowhere.
Here is a little glimpse into how Evan reminds me not to fear. (There is no video, just audio)
Indeed, I am a working mother. And sometimes, I manage to make it through the day alive and mostly well with a happy son and a somewhat pleased husband. But more often than not, there is dirt on our kitchen floor that you could write your name in. There is laundry that I can never seem to get through. There are several months of insurance claims that I need to submit, and for some reason I keep avoiding. I blow dry my hair and actually “do it” about three times a month. I left Evan’s “nap bag” at home today, I forgot my water bottle, and then I was picking up Evan from school this afternoon before I realized I had left my purse at work and had to go back and get it. I yawn about 25 times in the afternoon hours. I forgot about Evan’s OT appointment last Friday, thank goodness for Google Calendar reminders on my phone. I still miss Evan while I’m at work. I miss him terribly sometimes. It can be hard to hear stories about his day that I have had no part of. It feels strange to not get to work early every day, and to leave right on time without working late because I have to go pick Evan up from school. I buy the ready made rotisserie chicken from Shoprite because I forgot to get chicken out of the freezer. I often lament the lack of time I have with Todd one on one, but when we do have time to spend together and catch up, we often just need to rest because of how tired we both are. Don’t get me wrong, things are going better than I expected. Mostly because of how incredible Evan’s school is. And I truly do feel very blessed to have the job I do. But as I stated before, being a working mom is no joke. And I give props to any woman or man who is navigating parenthood while also holding a full time job in or out of the home. It is quite the experience.
Give yourself a little grace and give YOURSELF some props. You deserve it.
I only have a few minutes before I pass out for the night but I have felt very negligent of the blog the last few weeks so I wanted to make sure to pop in. I have had many moments in the past few weeks where I though, “ooh, I really need to blog about that.” I need to start writing ideas on napkins like song writers of yore. (if that ever was a thing?) Being a working mom is no joke. For real. But I’m doing it.
I’m about a month and two weeks into the school year. I survived the difficult first few weeks. I’m not texting my friend at Evan’s school multiple times a day anymore. I’m not feeling guilt laden as I browse through the messages on the local SAHM mommy boards at all the fun activities they are doing throughout the day. Well, it is hard to feel guilty when you don’t read the boards anymore. (ahem, it was better for my sanity to take a little break) I’m figuring out how to make lunches, mix Evan’s “milk,” make myself presentable, remember my materials, Evan’s materials, and make sure the dog is taken care of- all before running out the door. Albeit not at the time I would like to get out the door, but I am working on it. I’m definitely not doing this alone. Todd has been awesome, feeding Evan on the mornings I take him to school, getting him dressed so I can run around like a ninny getting things done. As I mentioned in another entry, Evan is doing so well at school. He loves his teachers and they love him. The other day I picked him up, and as I was pulling out of my parking spot- the kids who were still there were walking out to the playground. One little girl saw my van backing up and waved with excitement and said, “Bye Evan!” and my heart just soared. It was the smallest thing, but it meant the world to me. The fact that other children like to be around him and he is being well cared for, is really all that matters to me. The hardest thing right now, is finding a balance. Time management-finding a way to take care of all aspects of my world- teaching, mothering, being a wife, friend, daughter, taking care of Evan’s therapies and health, and fitting in the occasional exercise class and a little time to breath. I’m sure that will continue to be a work in progress. Thank you for all the well wishes and supportive messages I received in the first few weeks back to work. I know I am not the first person to have to juggle a lot of different roles in a day. In fact, I hope to learn from the many savvy working mothers who have already been there and done that and know what works best.
More blogging to come later. My eyes seem to enjoy being closed right now.
I woke up today to a post about a fatal shooting that happened locally to a 53 year old woman who was house sitting. Last weekend we watched the news reports about the gun man who killed 13 people at random at the Washington Naval Yard. This. Last December I blogged about the horrific events in Sandy Hook. These are the events that cause us to cling to our families. To talk around the water cooler about how unsafe we feel, how our hearts are shattered, our fears renewed. You will often read posts on Facebook saying, “What has this world come to?” “I can’t believe I am raising children in a world like this.” And the scared, angry, questioning posts keep coming. I am not writing today to say that these events are not scary. Or that there aren’t horrible, evil, ugly people on this planet. I know there are. But I also know that there are some amazing people that do so much for so many And lately I have been reminded of that on an almost daily basis. That trampoline picture at the top would not exist if not for our neighbors. They have showered us with hand me downs from their adorable twin boys who are about a year older than Evan. When I say hand me downs, I should say almost new wardrobe. Clothing from Baby Gap, good quality, barely worn in clothes that Evan can jump, crawl, walk, and roll in. I was just folding all of the pajamas they gave us for the colder months and I think there are over 20 different sets, offering different amounts of warmth. They have given us blocks that have helped Evan to count, and stack. Their boys are so wonderful with Evan. Even though the twins are highly verbal, they do not display frustration with Evan when he tries to communicate with them. One time I heard one say, “I don’t know what you say Evan, but it’s funny!” They giggle together and push around trains. They are lovely, generous people and I am just so grateful they moved in.
Evan at his “work station” before I realized the chair could be flipped so he was higher. Whoops.
I could do a whole separate post about Early Intervention and how awesome Evan’s therapists are. They are loving, experienced, thoughtful individuals who have helped Evan to blossom. A friend of mine from work who also does E.I. has taken a special liking to Evan. I was definitely friendly with her when I was teaching and she was the occupational therapist at our school. But we weren’t socially close, we did not really talk outside of the school environment. Well now I feel like I could call her ANYTIME and she would be there for me in a heartbeat. She helped us get the blood work we needed for a research study, she got Evan into a music class in a program he was not “officially” a part of, she came over multiple times in the months after E’s diagnosis to give us tips and things we could start to work on while we waited for early intervention to begin. She got us into the Hanen speech workshop which led to our new speech therapist and HUGE speech gains for Evan. The program she connected us with for music also led to Evan’s preschool prep class and the cube chair that is in the picture above. She shrugs it all off saying it is no big deal but she has helped our family so much, I can’t begin to thank her enough. It’s no secret, I went into my transition back to work with a lot of trepidation about Evan starting school. I was worried about his eating, his talking, his sensitivity, would he nap? Would he make friends? Would the teachers be overwhelmed by his needs? Would they find Evan to be too far behind developmentally? I preach honesty on this blog and I can honestly say………..Evan’s new school and his teachers are incredible. Simply amazing. They care so much about their students. I knew they were nice ladies. I knew the ratio was small and lovely. I knew they were willing to have Evan as their only child with special needs, even with his age being slightly under their minimum. All reasons that helped us to choose the school. What I did not expect was how truly interested they are in Evan and his success. They ask questions, give feedback, and run things by me before trying new things. I noticed a fun toy on the floor that I recognized from Baby Babble and I commented on it. The director of the school said she bought it over the weekend after thinking of Evan and how he might like it-it was in his age range, that the cars were not too small for him. E is struggling to nap there (transition from cozy dark room at home in crib to a dimly lit room on a mat where he can just roll right off and walk around) and they constantly say, “we will try anything, just tell us.” The biggest heart melter was when I received a text from the director after I had sent information to them about an upcoming WS conference locally. She said she was very interested and wants to attend! The director of my son’s daycare/preschool wants to attend a Williams Syndrome conference! After he has been in attendance for two weeks. Evan’s occupational therapist wants to attend too!!! So thrilled.
Off I go, Mom, I got this!
Just a few more examples of goodness that has sprinkled around in my life in the past few weeks. -Without asking, my mom has emptied the dishwasher for me and kept my sink empty the days she watches Evan. -My dreamy husband is brewing a Chocolate peanut butter stout because of how much I love pb. (don’t hate, I tasted it today, yum!) -The morning I dropped E off for the first time,I walked into my classroom and found a vase filled with fresh flowers from the woman I co-teach with. -Unsolicited, a co-worker I am not particularly close with shared her peaches with me at lunch after I lamented missing out on the last cup. -A friend is working on a new blog design for me, and sharing her expertise for nothing. She said she enjoys what I write and she enjoys designing so it is her pleasure. I realize that shared peaches, or friends who send supportive text messages when you need them most, are not going to end all of the unnecessary violence, hatred, and prejudice in the world. I figure I can’t control the evil that exists, and that can be unnerving….. but I can control how I focus my energy. And I am choosing right now to focus my energy on love, the love that surrounds me and the love I feel compelled to put out there. Evan exudes love, and I see no reason not to try to reflect that myself. Put it out there people. Put love, kindness, patience out there. See if it sticks. I know it has in my life.
First Day of School for Evan (27 months) September 2013
Well….I did it. We did it. We made it through week one of Project Return to Work. The last day I taught in a classroom setting was in April of 2011. I was 9 months pregnant and incredibly eager to meet my son and become a mother. I can honestly say I had NO CLUE what the next two years would bring.
None. Zip. Nada.
I didn’t know the excruciating pain of labor. I didn’t know the extreme joy of holding my first born child after carrying him around for ten months and five days. I didn’t know the turmoil that sleep deprivation can do to your emotions and your psyche.
Saying hi from my classroom.
I didn’t know much I would need and love having my mother in law stay with us when I struggled with anxiety and insomnia in the months after giving birth. I didn’t know that being a mother is not necessarily an inherent skill you are born with. It takes work and experience just like any other job. I didn’t know that I would miss getting dressed for work in the morning and the adult conversations that go along with having a job outside of the house. I didn’t know how guilty I would feel for missing those things.
I didn’t know how much guilt stinks.
I didn’t know how being a SAHM sometimes feels like high school all over again, with the mommy cliques and the comparison conversations that go on at the playground and indoor play facilities. I didn’t know how much richer my relationship with my mother would be through becoming a mother myself. I didn’t know how important it would be to make sure to have a child free conversation with Todd every day. I didn’t know how hard it would be to leave Evan with a babysitter. We still have not “hired” someone outside of our circle of family members and friends. I didn’t know how exhilarating it would be to have a baby free dinner with Todd. I didn’t know we would find out our child has a rare genetic condition. I didn’t know how life changing a moment in a doctor’s office could be.
I didn’t know how hard it would be to be around my friend’s children for a while. I didn’t know how desperately I would try to find a reason to believe the doctor might be wrong. I didn’t know that one day I would realize my child was going to change people’s lives. For the better. I didn’t know how music would bring so much joy to our child. I didn’t know that I would end up taking an additional year off and have no regrets. I didn’t know how I would go from wanting to work, to not wanting to work, to needing to go back to work and all the emotions that go along with it. I didn’t know the power of online communities. I didn’t know I would make lifelong friends on a support board. I didn’t know I would wear a Williams Syndrome awareness tee shirt to the store and hope that someone would ask me about it. I didn’t know how the half hour after nap time would become my most favorite time with Evan. I didn’t know how important early intervention is. I didn’t know how much I would value Evan’s therapists.
I didn’t know how hard it would be miss some of Evan’s therapy sessions because of work. Again, I didn’t know how much guilt can really stink. I didn’t know how hard working moms work. I didn’t know how hard stay at home moms work. I didn’t know conflicted I would feel about being both of those things. I didn’t know how hard it would be to give up the amount of control I have over Evan’s life. I didn’t realize how much I value being in control. I didn’t know how two big blue eyes could just fill up my heart and tear up my insides all at the same time.
I didn’t realize how blessed I was, and would continue to be.
I was given the distinct honor and pleasure of guest blogging over at Mommy Mentionables today. Melanie’s site is helpful to new moms, seasoned moms, and bloggers looking for tips and ways to improve their sites. Please take a second and check her out! Tell her I sent you!
“Don’t feel guilty for loving the things you love about your job. Don’t feel guilty for missing him. Use up all the emotions. Own them, use them. They will steer you correctly.” – Obi Wan Jamie
When we met IRL for the first time June 2013
So I have this friend. This AMAZING friend Jamie. We met on this fancy thing here we like to call the internet. We met through a support board for families of individuals with Williams Syndrome. Her daughter, Norah, is about 4 months older than Evan and I just adore her. We have gotten to know each other through Facebook private messaging, text, and phone calls. Whenever I am feeling doubtful about something, or I am worried about Evan’s development, I don’t google it, I send Jamie a message. She is one of those people who just “get it.” And not only does she “get it,” but she also gives incredible advice that sounds like it should be coming from a woman far beyond her years. I call her Obi Wan on the message boards because her responses to posts are always so thoughtful and…well, wise. Can’t think of a better word for them. Last week I was having a moment (one of many) where I was struggling with the idea of going back to work. I messaged Jamie in a moment of panic and told her I was starting to crumble. She got back to me and part of what she said was the nugget I opened with: “Don’t feel guilty for loving the things you love about your job. Don’t feel guilty for missing him. (my son) Use up all the emotions. Own them, use them. They will steer you correctly.“
Getting in good cuddle time
I have heard over and over about how working is a part of who I am. Being a teacher is sort of part of my genetic code, as much as missing the elastin gene is part of Evan’s. I have felt that myself at times when I missed standing up in front of a classroom. I actually think my true love is theater, children’s theater primarily, and being a teacher is sort of a form of that. (sometimes….) But since staying home for the extra year with Evan, I have become very comfortable in my role as mother, therapist, housekeeper, paperwork filler-outer, etc. I like being the one who knows the most about Evan. It feels right somehow. But we also knew as a family that I needed to go back to work for financial reasons currently and in the future. Hence the transition period we are currently in. But what Jamie said felt so incredibly helpful to me. It gives me permission to feel sad when I walk up the ramp of his school on Tuesday to my car and feel the sting of tears that I know will come. To feel exhilarated when teaching a new skill to my students in a few weeks and knowing they are “getting it.” To feel anxious when I think of Evan taking a nap on a mat for the first time, and wondering how he will do with the other children, will he interact? Will they be frustrated by his speech patterns? Will they love him? Permission to feel excited to see the students I left for maternity leave as second graders who are now fifth graders. To feel comfort in the hugs of my staff family who have gone through what I am going through before. I like that concept. Owning my emotions. The good, the bad, and the ugly. Own them and use them. Use the sensitivity I have as a mother of a child with special needs to better understand the parents of my students. Use the sadness I feel from missing Evan eat his lunch or play on the playground to be a better mom to him when I DO have time with him. Make it count. Love what you love and miss what you miss. It is all part of the package of being a working parent. Hoping I can heed my own advice in the coming months.