Some don’t grow up

21 Jul

You know how you meet little old ladies, who see you with your child, and they smile and say “Enjoy this, they grow up so fast!”

I always smile and nod and say “Oh I understand.”  Because they mean well, and they’re right – 3 out of 4 times.

I don’t say “Well, THIS one will not grow up.”  I don’t have time to explain.  And I am not into making people who mean well feel bad.

But it’s true.  I have a child who in many ways, will never really grow up.  As she ages and grows, it just becomes more and more apparent.  This child of mine is still so very childish.

I was reminded of this yesterday, as I bathed her.  She stood in the shower enjoying the water as I tried to clean her.  She flapped about, spraying water everywhere.  I got frustrated.  She was either too close or too far from me.  I kept getting frustrated.  At the end, because she felt I wasn’t damp enough I guess, she actually started shaking off like a puppy, spraying water everywhere.

Most parents know this drill.  They go through it with their two year old.  Then their two year old grows up a little more and stops spraying water everywhere during every bath time.

We’re seven years past the two year age.  I’ve given up hope that she’ll outgrow this.  And I had this flash of “OMG, I’m going to be washing her hair forever!” moment.

I actually said out loud “I am SO TIRED of this!”

Luckily, Maura doesn’t understand me when I say things like this and she’s all in her moment.  So I was able to get it out without hurting anyone.

Because sometimes – you just have to say it out loud.  Get it out there, acknowledge it, and then go back to drying the wet child off, helping her into her pj’s, combing out her wet hair as she dances about.

I’m lucky.  I’ve got a child who has such a sweet disposition, who goes with most flows, who enjoys life and doesn’t mind change.  It makes my life easier, and a future with her less daunting.  Yes, she’ll be with us forever, but she rarely holds us back.

But there are times I get a glimpse of what it’s like to have a more difficult (though equally as loved) child.

When we were at Legoland during our holiday in England, Maura was doing great at first.  She loved everything.  Everything was awesome (her word).  And then the day progressed.  She got more tired.  She wanted a balloon.  We got away from the balloon seller, only to have him inadvertently follow us to the next section of Legoland.  This led to a twenty minute screaming tantrum over a freaking balloon, where she screamed, sobbed, cried, yelled, and sobbed some more while I stood my ground and people stared and the balloon guy finally disappeared.

Things perked up for a bit after that – we rode a couple more rides, she got a crown, all was good until we hit the gift shop.  With about 2000 other people, as it had started raining in earnest at that point.  Two minutes in the overcrowded, sensory overload of a store and Maura was screaming.  I took her outside where she sobbed some more and others stared.

It’s one of those moments where I find myself having this rare thought of “I wish she LOOKED special needs.”  Because then people would have a clue that my child isn’t typical and doesn’t react typically.  But instead, she looks normal and therefore people expect normal behaviors.  Yet she is anything but normal and itt takes a couple glances to realize it.  Parents usually do get it after a couple looks, children however don’t, so they stare until their parent shoos them away.

But that was all another time.  Now she’s stretched out on my sofa, daydreaming about something, a little smile on her face and I once again wonder – what is going on in that head?

Maura is this strange combination of able and disabled.  She can make herself a bowl of cereal, pour herself a drink.  She can almost get herself dressed.  She knows what she likes and what she wants.  But she can’t always communicate that.  Which would be frustrating to anyone.  She’s a strange mix of 9 year old girl with the physical abilities of about a 4 year old and the emotional abilities of a 3 year old.  No one ever glances twice at a 3 year old tantruming.  We all just smile inwardly while thinking “I remember that. I’m SO glad we’re past that!”

But I’m not past it.  We’ve been stuck here for years, moving forward at a snail’s pace. I have nothing to tell me if it’ll ever more much more forward.  We could be stuck here forever.  And while it’s one thing to have a sobbing 9 year old who can’t understand why mom won’t buy her a balloon, imagine it being a 29 year old sobbing over it?

I can imagine it.  And it’s a little scary.  So I push it back into the mental closet with all the other not so nice “what if’s”.

Now, I can hear a section of you saying “But why don’t you just buy her the balloon?  It’s not a big deal!”

The answer is – because if I buy her one thing, she expects me to buy her every. single. thing. that catches her eye.  Every. Single. Thing.  I don’t have that kind of money, and I don’t want to have to do it.  We wouldn’t buy every single thing our 3 year old tantrums for.  So why would I do this for her?  She’s special, but she’s not THAT special!  She can handle not getting things, and it’s a life lesson she needs to learn.

Back to us standing outside the Legoland store, her sobbing into my shirt.  After a few minutes, I decided to take her to the car.  I told her we were going to the car and she said “Okay!”  It had all gotten to be too much for her and we both knew it.  But as we approached the exit, she suddenly yelled out “I want a wand!”

I stopped and said “You want the wand?”

“YES!”

“Okay then!  Good job using words!  Let’s get you that wand!”

See, she knew what she wanted. A fairy princess wand to go with her obnoxious pink crown.  But in the store, with kids screaming about, parents yelling over the noise, the forty bazillion choices and bodies everywhere, she just couldn’t get that out.  Once free of it all, she was able to tell me what she wanted.  And yes, I rewarded it.

I’m sure some parents who’d seen the screaming and sobbing thought I was nuts for marching the girl back into the store.  You know, rewarding her bad behaviors. That’s not what I was doing.  I was rewarding her for being able to calm down enough and tell me what was going on.  I spotted Josh and said “She wants a wand.”  He said “Okay!”

We picked out the wand.  This time, when she lunged for the pretty dress up dresses that wouldn’t fit her, I was able to distract her by handing her money for her wand.  I steered her quickly into the shortest check out line, she paid for her wand, and we got the hell out of Dodge, but this time, with a smile on our faces.

This is my reality.  This is my every day.  Some days, she’s perfect and a joy. Other days she’s splashing me with bath water or having a meltdown outside a store.  I

t’s an emotional roller coaster, one I don’t always handle well.

I hear of friends who are frustrated because their two year old won’t potty train and I want to have a hissy fit of “Oh shut it, my NINE year old won’t potty train!”  But I can still remember when my other kids were being stubborn about potty training at a normal age and how frustrating it was for me.  So I stay silent.

I hear of friends with girls Maura’s age talking about how great they’re doing in school, honor rolls, winning at their sport, talking back at them, with their messy rooms and I want to say “OMG!  At least they can talk back to you!  And can clean their own room!”  But then I remember I brag/get frustrated by Miriam, with the messy room because she’s too busy writing a song.

I get frustrated with my other kids for not being patient with Maura at all times.  Except I’m not either.  And they  are still amazing siblings who really do look out for their sister without me even asking, and sticking up for her when another kid made fun of her (even if Miriam did feel rude for yelling “shut up” at the kid making fun of Maura – I informed her in that case, it was okay to be rude.)

And then I find myself in the position of trying to protect my child while trying to help her spread her wings.  She’s still so little in so many ways.  But she thinks she can do more.  I’m the mom on the stairs waiting to catch her if she trips, helping her get her shoes on, changing her diaper  Yet I also know she has a mind of her own, her own style of clothing, her likes and dislikes and opinions. I’m the mom who buys her Doctor Who sets and takes her to concerts. I’m also the mom who squeezed her to my side while she laughed her way through the roller coaster, loving every moment.  Until it ended.  Then she burst out crying.

That is us in a nutshell – zipping through life while she laughs and cries, and I waiver between enjoying the moment and worrying for her.

And then one day, some nice old lady comes up to me and says “Enjoy them, they grow up so fast.”

Me?  I find myself wanting to tell people “Enjoying watching your kids grow up, because some never will.”

Miss Maura, age 9

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31 Responses to “Some don’t grow up”

  1. Marlene July 21, 2012 at 7:50 am #

    Thank you. What a great column. Many miss my son’s condition at first also, and freak out at his behavior. Sometimes I become frustrated, other times I’m overwhelmed by my love for him. It’s nice to know I’m not alone.

  2. Deanne Medina July 21, 2012 at 8:30 am #

    This is so well said. I have to say that when my 9 year old with Down Syndrome was a few months old, I was somewhat grateful that she had DS as opposed to something else. At least with that, we have some idea of what her limitations will be and a glimpse as to what obstacles we will face with her health. Luckily, she’s an amazing, independent, easygoing kid. But there are those moments when she gets into something or walks out the front door without a parent when I’m losing my mind that make me worry about her future. Thank you for putting these thoughts into words so well. Yes, we have kids with special needs. Yes, they are wonderful in many, many ways. But that doesn’t mean that it doesn’t make us crazy sometimes.

  3. Liz July 21, 2012 at 8:50 am #

    Liz
    I completely understand where you are coming from my Little darling has just turned 30. Life can be a little overwhelming for them and us. We know how to deal and they don’t have that ability. Strangers watching can be so cruel. When my child was having an episode in a store( as a small child) I
    asked a woman who was staring if she thought she could do better to come and try. Needless to say she went away. I commend you for putting all this out there for others to read. We need more understanding of our unique children.

  4. Carissa Johnson July 21, 2012 at 8:56 am #

    I hear you…amazingly every single aspect of what you write…I hear. Right down to the four kids..my special sweet girl’s name is Serena :-)

  5. Kelly Ibe July 21, 2012 at 9:09 am #

    First let me say that Maura is an angel … so so so cute! Second … sadly, it gives me great relief to know that i am not the only one that thinks “i’m so tired of this” in moments. Annissa is an amazing child, and like Maura very happy and sweet and can do several things on her own; however, when friends say, oh my kid went through this at age 3 or 4 or 5, it saddens me … Annissa is 17. I never envisioned marrying a man with a special needs daughter, let alone who would live with us full time because her mother doesn’t want her …. but now … I wouldn’t trade it for the world. Annissa has been an inspiration to me and has helped me change for the better in SO many ways, yet it is still daunting thinking about the future and the needs this “child” will always have. One day at a time is a mantra I often find myself thinking.

  6. Niki July 21, 2012 at 9:36 am #

    Once again I find myself feeling exactly how and what you feel. I even have four kids! I don’t think those “I’m so tired of this” moments will ever go away, and with all that we do as parents of special needs children, we definitely have the right to think that!!! Because there really is no other way to explain it other than we are just down right tired of some of that stuff we go through. It doesn’t mean we love our children any less or want to give up, it just means we need a moment to say “hey, our kids were dealt a really crappy hand when it comes to “typical” things, and I’m tired of it!” I have found one small thing that I can now think about when I’m having one of those bad moments and there is no one around at the time to let me vent and get things off my chest…we are a very big Christmas family. We go all out with the decorating and baking. And every Christmas morning for the last 18 years I have had the joy of watching my kids walk down the stairs and see all the excitement and anticipation on their faces of the presents that santa brought. A few years ago I was a little bummed that my then 9 year old son was asking for this silly toddler game called Lucky Ducks. It was all he wanted…not a bike or a video game like others his age. And then all of a sudden it dawned on me…it really doesn’t matter what he wants because he is “typical” in that he is getting excited about a present and the anticipation that Christmas morning brings! It’s not always perfect and we have had many Christmas mornings of sensory overload, but I still get that one “typical” moment of him walking down the stairs with a glow in his eyes on Christmas morning. And then that moment I had grew a little more when I realized I will get this for the rest of my life…those moments of “I HAVE to do this the rest of my life” suddenly became a litte more easy because I also GET to do this the rest of my life. I get to be santa! I can’t imagine that the joy I feel from seeing my child’s eyes light up on Christmas morning will ever change, even if he is 40 and asking for a preschool game! So when I’m feeling bummed or just down right angry with what my day to day life has become, I try to remind myself that I will always be santa.

  7. niki July 21, 2012 at 9:36 am #

    I have so many of these feelings with my 11 year old son! And like you I have three other children who are typical and yes, they do ” grow up so fast.” In fact I’m sending my oldest off to college next month! But no matter what we go through as a family or the gains my son makes that we thought were never even possible, it doesn’t mean I don’t long for those EXACT same moments for him that all of my other children get. I still think about it a lot and imagine I always will. Luckily I have found one small thing that can help put those sad, scared, helpless moments to the back of my mind a lot of times…we are a family that loves the Christmas holiday. We go all out decorating and baking and Santa brings presents. Two years ago I got a little sad that my 9 year old was asking for a toddler game called lucky ducks. Not a bike or video game like other kids his age. And then all of a sudden it dawned on me…I absolutely love the younger years of my kids waking up Christmas morning with the excitement and anticipation of what Santa brought them….I get that feeling for the rest of my life! I will always be Santa for one child and that joy of seeing him wake up with the innocence of a child on Christmas morning, whether he is 11 or 35.

  8. Karen Skutt July 21, 2012 at 9:43 am #

    This is a conversation I have with my husband or myself almost weekly! I know exactly how you feel. My sweet darling is named Kailee, and she is the light of my life…and at times the thorn in my side. I, too, try to take life one day at a time – to enjoy my “typical” twin daughter and my “special K.” Prayers and hopes going out for all of us – to find the bright and the good, to ask for help when needed – and ti find it!

  9. Tammi July 21, 2012 at 9:44 am #

    Love your blog! You describe my life to a T! The other day when my 15 year old daughter was having a tantrum at the library because she couldn’t find the right dvd, an old lady walked up and said “if that was my child I’d smack her”. Nice.
    On another note, keep at the toilet training :) My daughter was pee trained at 10 and bm at 12 – lots of screaming for both of us but it finally happened!

  10. Wendy Carroll July 21, 2012 at 9:58 am #

    They may not grow up in many ways but in size they sure do. It’s a challenge at times to deal with my 6’1″, 200 pound son. He’s a little kid in an adult body. It frightens me to know that some day I’ll be unable, physically, to care for him. He’s 22 and I’m 60.

  11. Rosemary Rizzuto Moses Niedziela July 21, 2012 at 10:01 am #

    Definition of an old mother- “Some one who can no longer be made to feel guilty.” It’s not worth the time of effort to even take in what others may or may not be thinking. The old woman in your story is really telling you that once children no longer need you they will disappear out of your life. As a mother you still love them as much as when they were that sweet little bundle of joy. Maura is special needs, and as you so eloquently express, she will always need her mother.

    Cue does to you for the way you handled the gift shop/balloon situations. No child can have every thing they think they want at the moment. That’s one of the hardest parts for all parents. We know that this thing is not going to bring real happiness. In fact, it sets them up for greater disappointments in life. I love that you knew to take her out of the crazy making situation & allowed her to vent her frustration. It gave her the space to collect her thoughts & work out the solution that was what she wanted- the magic wand. By the way, you must have an awesome magic wand of your own, because you’re doing just great kiddo!!! Love-Mom

  12. Hope Prochnow July 21, 2012 at 10:09 am #

    Just got done helping my 9 year old w/ the simplest of dressing tasks. I totally hear you and can relate. Thanks for helping me realize I’m not alone.

  13. Meg Sutton July 21, 2012 at 10:14 am #

    You impress me every time I read you. Your love and patience radiate through your words. As I go through my day with my darling little boy who is physically disabled with several developmental delays, I can only hope to show him the same kind of pride and love you show Maura. Kudo’s to you.

  14. dianne devito July 21, 2012 at 10:25 am #

    OMG – I feel your pain and could have written it too, the only “advantage” if it were such, is that my ellie has ds so she does look a little different, so once we get “the look” people realize, but sometimes kids don’t. ah, if I had the words/time/etc. or even better, knew how to log into my blog on my phone. it’s the only time I have to write, and it’s where all my pictures are. oh well. some day i’ll figure it out…. in the meantime, thank you for writing and finding/making the time to write!

    What a lovely picture of Maura at the bottom. She has a beautiful smile. Hang in there.

  15. phxross July 21, 2012 at 10:32 am #

    I think all of the mom’s here are amazingly patient and understanding.

    Having worked with adults with disabilities (physical, cognitive, and emotional) in the past I can easily spot a special needs child or adult. Many times I’ve been out with my husband, mother, coworkers, etc and we encounter a situation like you had with Maura (who has a smile to melt your heart!) in an adult or child and I’ve had to quietly say to the person with me who doesn’t understand… “the person is a special needs adult/child, for him/her that behavior is normal in this situation”. And I’m not afraid to mention it to strangers if I can do so quietly and maybe I’ll have opened that person’s eyes to the fact that everyone who “looks normal” may not “be normal”.

  16. Lynne July 21, 2012 at 11:23 am #

    Thank you for speaking my heart. My youngest is 14, with a clinical diagnosis of Angelman’s Syndrome. Her mental age is 2 yrs and she is non-verbal. Your post shows me that some days are rough, but the joy of our” angel” keeps me going every day. Yesterday, someone recognize my Julie, and did not recognize me. Usually, I run into caring people who help me when she is doing sometime non age appropriate. Your Maura should be rewarded when she uses her words to tell you what she needs. I really enjoy your posts and really think your whole family is brave to move to Ireland with your challenges. Keep posting your heart… God Bless.

  17. Dianna Chaloupka July 21, 2012 at 12:18 pm #

    I feel your pain…and your joy and your sadness. My 16 year old son does the same thing yet looks “normal” I get tired of the looks from strangers because I “am the bad parent”. I give them a glare back and continue to deal with my son on his level. It is hard to realize that his child who is as tall as I am has the mind of a 5 year old and emotional stability of a 3 year old. This does bring on challenges but I keep telling myself that this set of challenges will pass and we will move onto another set of challenges so I need to “enjoy” the challenges I have today because who knows what set of challenges he will have tomorrow. By the way, your daughter is beautiful and you are doing a GREAT job!!!

  18. Lynn McLeran July 21, 2012 at 3:32 pm #

    I can relate! My Karen will be 31 a week from today. She now lives in a group home, but I see her regularly. We’ve been through everything you write about. Everything. Karen will not age (other than chronologically) beyond the way she is now. She functions at about a 6 year old level. She was toilet trained at 15. She has good days and bad days (meltdown!) Sometimes when I talk to a “typical” 31 year old adult, I have a fleeting wish that Karen could be like that. Then I think….no…. Karen is Karen, on her own track in life, always loving and always loved. Thank you for an excellent article.

  19. charlie July 21, 2012 at 3:53 pm #

    What a moving glimpse into your life. I hink of you almost daily, altho’ I don’t even remember who sent me your blog and how I learned about your Maura. Our Rachel was so much like Maura. It’s almost as tho’ I’m reading my daughter’s FB posts. The ‘talker’ was one of the greatest things we found for her. She learned to talk to us through the computer and we finally learned what was in her mind. We learned she wanted to sell hamburgers and cokes when she got big. She told us what she was afraid of or why she was sad. Once when the teacher asked her in class where she had been the day before she replied with her ‘talker’, “The Vagina Doctor”. (Her pediatric OGBYN). There are so many wonderful stories about her. If you wish to learn more about Rachel, please go to FB: Touched By An Angel Rachel Bungarden. She left us when she was 11, in 2010. We miss her much, but we celebrate her at the FB site with the Scatter Sunshine Foundation. I can say that while caring for a child with special needs is hard, it is probably the most fulfilling and life-changing thing that has happened to our family.

  20. gina July 21, 2012 at 3:56 pm #

    There is a special place in heaven for moms like you. <3

  21. lisa July 21, 2012 at 4:23 pm #

    After reading this and having experienced Legoland I know exactly what you mean. All I can say is “Welcome to Holland”. If you havent read it already, you should!!!

  22. Dawn July 22, 2012 at 7:03 am #

    I am sitting in tears.Tears of sadness and tears of laughter as this could be me talking about my little boy. It was so kind of you to be so very honest about your feelings and your everyday life with Maura and I have to say a huge thank you as it has made me feel like I am also not alone. Yes its very difficult some days when al you want to do is make people understand that your child doesnt react the same as every other child of their age and that they find situations that may be normal to other kids disstressing or too much to cope with. We shouldnt have to explain but I often find myself doing just that so as not to make them think poorly of him. Its silly I know but sometimes its eassier just to explain. Of course lol thats if its a good day and the wee one will let you.
    I loved this post it has really given me hope that if others can deal with this so honestly and with such compassion then so can I.
    Wishing you all the very best for the future.
    Dawn x

  23. The Bright Side of Life July 22, 2012 at 10:29 am #

    Yes! Dear parents of ruggles (regular kids), enjoy watching your kids grow up…. because some never will, and one of those is mine! Great post.

  24. Angela Dowson July 22, 2012 at 10:39 am #

    Hi there. My heart goes out to you. I also have autism I am 37 and have behavioral problems

  25. Andrew Houtman July 22, 2012 at 1:04 pm #

    I worked with special needs adults for thirty years. I,ve spoken to some of the parents, but this column gave me an insight I haven’t heard, and brought tears to my eyes. You touched me deeply.

  26. Lisha @ The Lucky Mom July 22, 2012 at 4:13 pm #

    I have no words. Only love. And renewed compassion. <3

  27. evie hawley July 23, 2012 at 9:56 am #

    I totally understand your set of feelings. I have a 9 year old who emotionally is close to 9 with full on tween tude, cognitive ability if a 6 y, motor skills of 3.5, speech of 3.5y.

    My girl has a duel diagnosis of CP and Down syndrome, so it is obvious she is different. It is still really awkward. I hate those moments. They are often socially painful as she has significant frontal lobe damage and unpredictable impulse control.
    Also, I understand why you bought the wand, I would have done the same.

    I am also interested in your comments about how you other children interact, deal with sibling rivalry, and support her. My younger child is going to kindergarten this fall at the same school his sister is at. I am getting hints that we are going to have some significant discussions and family policy to create. I am not sure. What I am doing. I am learning parenting with my atypical child, and haven’t dealt with the bullying, social stuff with a typical child.
    Thanks for continuing to share your story

  28. Elyse July 24, 2012 at 5:33 pm #

    Beautiful as always, you always find the right words to be able to wrap me up and feel a part of your family. And as I’m tearing up after reading another one of your entries, I just want to tell you how beautiful your family is inside and out. And we could all be lucky to know someone like you and share in your life. I can never get over how beautiful I find Maura to be every time you post a picture of her. Her carelessness as a child, and her bullheadedness as a female! I can’t even begin to imagine how frustrating it is for you and Maura when she can’t find the words to tell you how she’s feeling and what she wants.

  29. Anja August 1, 2012 at 3:01 pm #

    Thank you….again! My special son is 17 and I have often said, both in my head and out “I am so tired of this”. You inspire me.

  30. Stacey August 10, 2012 at 9:37 pm #

    I totally get it. It is an emotional roller coaster, for sure. Thanks for this great post.
    On a bit of a lighter note..I wanted to stop by and let you know that in the spirit of blogging, and networking, I am nominating you for the Versatile Blogger award. If you feel like participating, please visit my blog, More Than Words http://mthanw.blogspot.ca to check out the details. If it’s not your thing (or you don’t have time), no worries. I just wanted to let you know how much I’ve been enjoying following your blog.
    Have a great weekend!
    Stacey

  31. Neurotic Iraqimom August 23, 2012 at 8:31 pm #

    This post made my eyes well…You are so right, I too want to scream enjoy your kids grow up because some never will. And, and it breaks my heart just thinking that. It really really does…

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