I beat myself up over the silliest of things: feeding the boys pb&j’s two days in a row, nagging them too much, not having tissues in my coat pocket when a little nose is running. But tonight it was over ripped paper. Not ripped paper really but that Cody could not rip paper. He was doing a makeup art project as he was out of school sick for the last three days. He was to trace his hand, cut it out and glue it to a piece of paper and then rip little pieces of colored papers to glue around his hand shape making a cute fall tree loosing its leaves. His inability to grasp how to rip paper into small pieces scared the hell out of me. My inability to not get exasperated, frustrated, angry; my inability not to have endless patience and be able to instruct him on such simple things without feeling some panic and a bit of hopelessness creep in this is what I am beating myself up over right now.
Cody from afar is your typical six year old boy. He laughs and plays, he talks your ear off and loves fart jokes, he gets dirty and proclaims recess the best part of school. Up close and when you spend a little time with him you start to notice the uneven edges of Cody. He appears clumsy and walks with a hitch in his gait, he is grabby and prefers to spend his time hanging out with adults instead of other children his age, you catch him staring into space and he makes strange noises at random times.
When I help out in his classroom and I see him side by side with his peers those uneven edges start to overwhelm me. His handwriting, like drunkenly scratched hieroglyphics next to his classmates handiwork, strike fear into my heart. His self portrait, barely resembling a head with eyes, looks like something a preschooler drew. His math papers come home with mostly wrong answers scrawled across them in large uneven print. I forget that he is labeled by the school as a special needs child. I don’t think of him as special needs. I think of him as my son, I make excuses for his delays and do not let his Cerebral Palsy and ventricular hemorrhages during his infancy be a crutch.
I keep thinking there is something more we can be doing, should be doing but I don’t know what that is. We hired an elementary school special needs teacher to tutor him on his reading and handwriting during the summer so he could catch up. He goes to physical therapy once a week, has an occupational therapist come to our house once a week, he does adaptive swim two times a week, he has both an OT and a PT working with him once a week at school. I read with him every night and almost every night I make up practice math worksheets for the boys with fun stamps and bonus questions and ultra bonus questions. I hype it up as fun, fun, fun and they eat it up and ask me for more. But I do not see much improvement. And then I beat myself up over all this extra work, extra therapy. I beat myself up over him not having enough time to just be a kid. Then I beat myself up over worrying about all of this so much.
Maybe I am not being realistic, not looking at the whole picture. I want Cody to be at the same level as his peers but realistically he may not be able to keep up. I have no doubt he will get there but when? And when he does where will his peers be?
Such a rant. I know. I am just scared and frustrated and beating myself up.
Shoes On The Wrong Feet 
Hang in there. Just reading about your routine has me exhausted, so there’s no question of your not doing enough ! All of us moms are such a victim to this beating- ourselves- up- over -child rearing syndrome . You are a gr8 mom 🙂
Thank you. It is so hard to know if, as a parent, you are doing all you can for your kids. I just had one of those days. I have given it some time and have come up with a plan to meet with his school OT and get her opinion on his progress. I think I also need to bump up my coffee consumption to include an afternoon cup, because it is exhausting, ha!
don’t beat yourself up, sometimes boys are just late bloomers. My brother was always one of those kids that didn’t seem to be quite up to par but he was sick too, a teacher even gave up on him, but my mum never did. And now he writing his PhD, so give it time it will change
Cody is quiet and does not ask for help when he needs it (we are still working on getting him to ask to go to the bathroom instead of holding it all day.) I really feel that that is a good chance he may fall between the cracks and just coast along if I don’t get in there and give the system a little bump. I was feeling really overwhelmed and frustrated when I wrote this. It is not the type of post I usually publish but I needed to get it out of my head.
It sounds like your brother is doing great, good for him, and for your mom who, I am sure, worried and fretted and wanted what was best for you both.
yes and I am sure Cody will do just fine in time with such a great mum like you I have no doubt
I hope you’re reading this after a night’s sleep. I hope you’re reading this with the intent with which it is intended – to support you and send you a cyber hug..Some days are just flippin’ hard. Some days, subtle differences become gaping distinctions in primary colors that hurt the eyes. Some days we just know that there’s more we can do, when we know that we are doing all we can. Cody is a gorgeous, happy, creative, loving, adaptive, wondrous little boy. And he’s got some special challenges that for the most part don’t define him in your eyes – which is kinda the way it should be, don’t you think? His path is going to be unique to him (as will Carter’s), and it will be full of super fantastic mama love, a family that revels in him, and a world that will delight him. It will challenge him too – but I’ve yet to meet someone who isn’t challenged by this world now and again..Hang in there my friend – you are without a doubt a super mom, and the self-flaggellation should stop right now.
Oh thank you Mimi, your words are so very kind and wise and just what I needed to hear. I read them yesterday morning over my cup of coffee and after a good nights rest. This post just exploded out of my head, after a day of disappointments and frustrations, and I almost didn’t publish it as I don’t usually give way to my rants. I have let my thoughts on this stew and I have talked with a few other moms I know who are struggling with the added challenges of raising a special needs kiddo. They have given me support and some good advise. I have a plan on how to face the current situation and having a plan makes me feel a lot better. The over all picture is still a bit too much for me to look at head on but I am getting there.
The supportive comments on this post means a lot to me. I can not overstate how amazing this group of bloggers I have become a part of truly is!
We’re all here for each other..for if we are not, what kind of friends would we be? 😉
just read Mimi’s comment and am now feeling very inadequate — so ibid Mimi, and know that I have an idea of what you are going through—only an idea though, but I hate that schools label our kids–they are not a label, they do not belong in the boxes they put them in–and each one of those kids who are Cody’s peers have their own problems and are labeled–you are such a good mom–I can tell by all the worries–but step back and enjoy this little boy–I remember wasting so much worry on my little guys (both my sons were born very premature), but now they are bouncing adults – though my youngest still calls himself a man child. I am with you…….
Ah, well you shouldn’t feel at all inadequate! I am torn about the school putting labels on the kids – I think it is what they do with those labels and how the staff react to them, that makes them good or bad. I am frustrated with the system in that it has to be proven that the child is or will fall grossly behind before any help will be provided. Cody almost didn’t qualify for PT services and even the school PT said that was ridiculous and that he absolutely needs it. It is the words, you need the exact wording in the IEP in order to make the schools supply additional help. I rather feel at this point that the school’s services are almost an aside and that I need to find ways to help Cody improve in school, outside of the school (if that makes any sense.) I am not placing the blame on the schools but more on the system in general – the money is lacking and the staff is thin.
I need to worry less but continue to be proactive and involved.
from your description–you already sound proactive and involved – there is quite a lot of hoop jumping for some things that should be obvious
As moms, it is our job to worry. We are the ones who know our kids best! Sure, we probably over worry sometimes but sometimes we’re spot on and notice something that someone else does not! Hang in there, you are doing a fabulous job!!
Thank you. It is a tough job this parenting thing and trying to find the balance between worry and letting things be is a challenge for me. I wish I could just stop over thinking everything!
First of all, I think – in real life – we are soul mates. I have been “missing” for awhile but I read your blog because I have it sent to my email when you have a new post. Your blogs consistently move me — We lead parallel lives. I think Mimi said it perfectly — but, to add to that, success in our educational system does not equal “success” in life. Cody’s strengths will make him successful on some path – maybe not the one our educational system values — success is happiness, family, love, and laughter. Not math and writing. I KNOW you do this – but make sure he knows that even if he isn’t doing well in school that he is bright and wonderful!
I felt a kindred connection with you from the very start and even when you are “missing”, as you say, you, your family, and your struggles stay in my thoughts. This may sound cheesy but I send you positive thoughts whenever you come to mind.
I believe you are right about the educational system and what equals success but for most of a person’s childhood, the yardstick of success tends to be school. There are so many other ways, other places in our lives that hold more substance when it comes to what make a life a good one and these are the things I need to focus on. Cody has a lot of strengths and a lot of “good life stuff”, for lack of a better term, and I know he can do well but I worry about the tough travels he has to face in navigating through school. I don’t normally post about such things after all who wants to read rants and negativity – but my mind and fingers sort of took over and before I knew it this post was written, my evening was before me, so I just clicked the publish button and walked away.
I am glad you are here and reading and I hope you are well.
love you my friend!you are a wonderful mother
Love you too and right back at you! One day we will meet in person, I just know it. 🙂 Give your little ones a hug from me.
Oh my friend, it hurts me to read of your pain. I have absolutely no idea how you do all that you do and deal with all that you deal with. I have no advice for you to make your life easier because it is hard in so many, many ways. I do know, however, that we all have days when the hard stuff outweighs the easy stuff; when the doubts and questions all have sharp corners and they stick in our minds while the positives and happiness slide right through.
All I can offer is a suggestion that you take the hand that you are currently using to beat yourself up and wrap it around your shoulder – and do the same with the other hand. Stop beating yourself up and give yourself a hug. It’s what you deserve and if I were there, I’d give you one!
Oh, I don’t know if my life is any harder than anyone else’s – we all have our hard times – I have been feeling frustrated and worried about Cody since the start of this school year and it happened to flow out of me in this post. There are a lot of positives and goodness in my life and sometimes I loose sight of them.
You offer up a good suggestion. I need to give myself more hugs (and maybe more coffee and cookie breaks) instead of beating myself up. Thank you my friend.
What’s wrong w/p&j on a daily basis?
Anytime, we compare it brings up our worries. You’re concerned for your child and the challenges that he faces. That’s being a parent – not beating yourself up. Your kids will be better off for it.
Btw, my kids handwriting is poor too. They are lucky to be in the computer age.
Yeah, I know comparing your child to others is a slippery slope but with teacher conferences coming up, I know Cody’s differences, his struggles in the classroom, will be an issue.
My husband made a comment similar to yours about them living in the computer age. He said that after school, Cody really will never have much of a need to write again. A shocking thought but relatively true.
In my local school system, they give some of the kids with handwriting problems these little computers to type on and that print out to do schoolwork/take notes, etc. It makes sense to me because, really, very few people NEED to hand write anything! Can you look into that for him? I think they would have to make accomodations if they don’t offer the same tool in your school system.
Cody has an IEP so technically if we can prove a need they are responsible for supplying whatever it takes to help with that need. We tentatively brought up our concerns with him falling behind with the handwriting piece of things (as well as the potential for this to stifle his creativity and written vocabulary) at the end of last year and were met with a lukewarm reception. I believe it will become a necessity to have a computer like you are describing for him in school, but I am not sure this is the year to push for it. I am going to talk with the school OT and see how she feel about it. A lot of it is politics and if she is on board with it and we can get written letter from his neurological development MD and his out of school OT (both of whom think this is the direction he needs to take), then I don’t think it will be a problem. It is all about asking it a way so as not to ruffle feathers.
What grade level are the kids in at your school who use these little computers?
I know it’s easier said than done, but I think you just need to try not to worry as much. It’s good for you and it’s good for them if you feel calmer. 🙂 Don’t worry about what Cody’s peers are doing. We all have different challenges in life, and we all move at a different pace either because of or in spite of those challenges. Over time it all evens out, and whatever may be the yardsticks that people are measured by at any stage of school, those yardsticks end up not really counting for anything later on. (I hate that tone of voice cannot be heard in screen messages…I assure you I’m not nagging. 🙂 )
And I assure you that I would never suspect you of nagging me. 🙂 I know you are right but it is so hard. I like to joke that I inherited the “worry gene” from my mom because she was a grand worrier about my sister and I. During my teen years it drove us crazy and we thought it was because she did not trust us but now I completely get it. Carter sometimes calls me “worried walrus”, a character from the Sweet Pickles book series who always is worrying. He is four and he is picking up on my stress, not good. I need to work on dialing back my worry and focusing on my inner calm. Over time, as you said, it does all even out. Thank you for the reminder.
My Mum used to seem to worry when I was younger to the point that I thought the same as you about it. But as I get older I get so I can see more why she was like that at the time, too. It is difficult, though. I do think that, to an extent, worrying can be part of our character or not. Some people always seem laid back about everything and I seriously wonder how they do it. But I think as we get older we do sometimes calm down and worry less. 🙂
You are doing a great job! You need to start believing that! Boys progress at such different stages – my two dudes both were so opposite in their development. I felt that so much of that was my fault – I should’ve done this or that. But, in reality, it is just how they develop. All will be fine (and PB&J sandwiches are wonderful!!!)
Thank you and you are right I need to start high-fiving myself every now and again. It is amazing how different Cody and Carter are in almost all ways. I need to focus more on the fact that they are individuals and that the differences are normal and peel off a layer or two of guilt I have been wearing around.
PB&J’s are good especially when we can alternate with PB&H (honey). 🙂
In a way I understand how you feel. My son had some problems with his speech when he was younger and me and my wife were stressed out about it, also making comparison of him and the kids of our friends of the same age but eventually he catched up and I believe what matters is that they are happy and comfortable . Don’t beat yourself up. I did that too and it was stressful.You’ll be surprise how much adaptable our kids are and the things they can do. Thanks…
You are very right about our kids being so adaptable and for that I am so glad. I think I could use some of that adaptability myself. It is stressful when your child is having difficulties or is lagging behind because as a parent you want them to be free from worry and to have no struggles. In reality having no struggles would not make for strong and happy children but facing that reality is tough.
I think you should keep in mind his special circumstances, starting out when he was still a baby. I think it’s a mistake to want him to be like all the other children. In fact, all people are different… and some of us have unusual disabilities and fall behind the others… but each of us has that special something that is unique and precious to those who love him, and I am sure that your Cody too, will develop certain qualities that make him a very special lovable human being. Comparing him with others might make it harder to appreciate him, and will bring on fears and worries. But taking the long way with him will help you realize those positive characteristics that are a part of who he is. I am sure that your love will strengthen him.
I know you are right but I also know that being different in this world can bring greater hardships and make for a bumpier journey. I tell myself that the struggles he faces due to his disabilities should be looked upon as positive for there was a time when we were not even sure he would have the chance to have struggles, to experience life. He is amazing and wonderful and I know he has in him greatness, but it is my inner motherly soul that wants to wrap him in my arms and keep him safe. It is my inner child who is stamping my foot and wondering why things can’t be easier for him.
In the grand scheme of things, I don’t want him to be like all the other children, I want him to be him. I want happiness and and a sense of fulfillment and peace for him.
Thank you for your thoughtful comment, Shimon, I appreciate it.
I worry, too. I worry that I am inadequate for the task of turning 2 children into 2 disciplined, caring adults. And I worry that my children will not have compassion and will not help kids that have a harder time. By showing your vulnerability and worries, you have given me much to think about treating kids fairly and with dignity. Thank you (and cream cheese & jelly is my lunch almost everyday).
I do my best to keep things in perspective and try not to worry about the things that are out of my hands but I have a propensity towards worrying and, as you know, there are a lot of areas of being a parent that have cause for worry.
Hum, I have not tried cream cheese and jelly, it sounds good though.
As u know I can completely empathise with you on this. I also have many days of beating myself up and feeling guilty over every thing. Think it comes with being a mom and even more so as a mom of a special kiddo. Lots of hugs. xx
Yup, all parents have their worries but parents of special kiddos have some extra weight to carry and things to fret about. I need to focus on very specific areas and address each one separately, maybe in this way I will feel like I am in a bit more control and can help Cody be his very best. Thank you for understanding and for the long distance hugs.
I think you are being realistic. I have the same fears. We’re currently going through neuro-psych testing. We’ll see how it goes. When you feel like you are alone…know that there are many walking the same path!
Thank you for your supportive comment. Some days are just more overwhelming than others and this day was one of them. I wish you luck with the testing.