Jeanine Griggs lives in Los Angeles, CA with her husband, two daughters, and 4 dogs. She is a teacher, writer, and advocate for children with special needs. Read more at The Daily Angst.
I strongly believe that we are the sum of our experiences. Life has been good to me in many ways, but I have an awful lot of those “character building moments” behind me as well. As it stands today, I am boiling over with character.
I am a mother, raising a special needs child. I have a ten year old daughter who has pediatric bipolar disorder, learning disabilities, and neurological/cognitive functioning problems. One could say that my plate is full. I will be the first to tell you that it is. Right away I want to say that I know there are mothers who have it worse than me. I am not trying to compete for the title of “Most Messed Up Traumatized Mother,” I am here to tell my story.
My story is a long one and it is not my intention to bore you with specifics. I will simply say that after many years of seeing specialists, doctors, teachers, tutors, and psychiatrists, we are finally coming to terms with our situation. It is almost more than likely that my daughter will not live a normal life as it is conventionally defined. She is 10 and can neither read nor write. She has extreme difficulty retaining information and processing thoughts. She cannot tie her shoe, ride a bike, or button and zip her pants. All of these things confound her. It is very easy for her to become overwhelmed.
My daughter’s illnesses manifests in different ways. She is shy and withdrawn at school. It takes months for her to warm up to her teachers and aides. She does not have any friends, and not for lack of trying on our part or hers. Lately, we have noticed that she is much more aware of her deficiencies in school and it is heartbreaking to witness this very hard reality.
One of the more difficult challenges that come with her illness each day is getting her to and from school. She will curl up in a ball in the corner and cry and scream. She does not want to go. We are always late. When I pick her up from school, she goes ballistic. She waits until the car door is closed, windows rolled up, and we are heading out of the parking lot. Then the fun begins. Hitting, kicking, screaming, throwing things, crying….you name it. I am often forced to pull to the side of the road because things get downright dangerous.
This episode can last for hours. Some days she can pull herself out of it more quickly than other days. She holds it together all day at school and erupts like a volcano once she feels she is in the safety of our company. Obviously, school is frustrating to her. She is not learning and she feels very alone.
Our daughter tells us of strange feelings in her brain (this is where the neurologist comes in), she complains of what she describes as “fast talking people” (again a neurological issue). She “cannot make the meanness stop“ (enter psychiatrist). Sometimes, she says, “I went away a lot today in my brain.” Clearly, she is not a textbook case. There is no box a person can check by her name, give a pill, and move her along. Things are very complicated, sad, and devastating. She receives many treatments that do include medication and psycho-analysis. The treatment often changes as she grows.
Many people ask me how I make it through the day. I have no choice. But I have developed what I call a “coping box” and it doesn’t even include alcohol. It is actually made up of things you cannot physically touch. The first and most important thing is that I do not listen to other people’s advice. It is similar to when you first have a baby and everyone has something to add. No one, absolutely no one, can imagine or know what my husband and I have and continue to go through with our daughter. We have had people tell us nothing is wrong with her. Others have said we are doing it all wrong. Our favorite remark is from people who ask, “why haven’t you made a reward chart for her?” Oh boy, they have no idea. Basically, to these people, we say, thanks, but no thanks. I do my own research and I talk to medical doctors and professionals.
I also surround myself with good friends and family members who are supportive and understanding – not judgmental. My circle is very small, because those people are hard to find. We have found that some people want nothing to do with us, because the topic is uncomfortable. Our parents have simply refused (until recently, now that she is older) to accept that anything is wrong with her. “She is a late bloomer….she is perfectly fine when she is with us…this kind of thing never happened when we were having kids….” Really? You have no idea how much it hurts when your own parents won’t believe you. My parents are not in my circle.
Focusing on the positive is crucial, and sitting prominently in my coping box. My daughter, despite all of these issues, can be the most loving and adorable child on this earth. She is also building character. She can be hysterical and is strangely wise beyond her years in certain ways. Her creativity blows me away and her ability to take small things from around the house and turn them into a game or pretend play is amazing.
Perhaps the most important component in my coping box is laughter and humor. I cannot let this get me down, so I find myself looking for humor in anything and everything. (My blog shows this side of me.) I do not focus solely on children and family. Many of my posts come straight out of the morning news. Other things are plucked from thin air, things I find curious. I need to keep my mind moving, otherwise I will start hyper-analyzing my daughter’s future.
Each person’s coping box probably looks different. The 4 things listed above are essential in any box. But there are other things in my box, such as yoga, reading, and talking to my dogs. Suffice it to say that my husband and I have a long road ahead, but I am facing it head on like a warrior with my box firmly in hand.
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{ 56 comments… read them below or add one }
What a beautiful post. You are a strong amazing mom.
Thank you for taking the time to read my story and leave such a lovely comment. J
Jeanine recently posted..Avoid Cambodia
My favorite line from this: “I have no choice.” How many times have we, as mothers, uttered this, when faced with unfortunate circumstances? That you can describe your daughter’s challenges and in the next sentence talk about how gifted she is is nothing short of the beautiful workings of a mother’s love. And the laughter. It’s a genuine coping mechanism for me (situated squarely in my coping box (albeit next to, if not slightly behind, the tequila)).
It’s unfortunate that you’ve had to tighten your circle, but I’m glad you have that circle. Glad you have people who are willing to stick around, acknowledge, and understand.
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Thank you for your comment. J
Jeanine recently posted..Avoid Cambodia
I am just glad you are not going for the title of “Most Messed Up Traumatized Mother.” LOL But on a serious note, I clicked your blog and it says no posts, It’s empty?
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I wrote this post a couple of months ago for Jill. It did not even occur to me to write my blog address. See how messed up I am! It is http://www.jeanine-thedailyangst.blogspot.com. Thanks for your comment!
Jeanine recently posted..Avoid Cambodia
Your daughter is lucky to have you. My 14 yo son has some GI issues and I’m constantly amazed when my in-laws ask if he’s “cured” yet. Keep strong and know that your daughter knows that you love her. :o)
My stepson is 9, I have raised him since he was 2. He has serious behavioral and social issues. I did all of my own research as well and found out what worked for MY SON. Sometimes you have to use your Mommy intuition and block out those who refuse to listen. You’re amazing and your daughter is so blessed to have you!
Oh wow, I have your daughter’s 3 year younger twin! My 7 year old dd has the same issues. We’ve never even tried regular school, I homeschool her. We have the same sorts of doctors, the same kind of days. You and your daughter are not alone in this boat!
What a wonderful post, Jeanine. I have a 7-year-old quite similar to your daughter. The creativity amazes me. He can take simple things and create the most amazing works of art.
Good luck in your journey and you are right to keep your circle small. Good friends help us through these events in life that don’t get “cured.” It is what it is and you are handling it beautifully.
I love your coping box! Of course mine is somewhat similar but vodka takes up a small corner!
inspiration comes in all shapes and forms. today you are mine. thank you.
Great story!!! I also have a special needs child..our days can be stressful and challenging all at the same time.
I too am a special needs mom whose child doesn’t seem to fit the “normal” diagnosis. My middle daughter, who is 5, has mild-moderate spastic diplegia cerebral palsy. I too know those worse off than we are, and we are so very blessed that our daughter even survived her first two weeks of life and only has this to deal with. (She was born full term but with PPHN and was unable to breathe on her own for 2 weeks, in the NICU for a month. Rare illness with no known cause)
She does not fit in with others with CP because of the area of her brain that was affected. She has little holes, so to speak, in the areas that affect speech, fine motor skills, and balance. We do PT and OT at the local children’s hospital. But it is hard to see that she struggles to keep up with 4 year olds in her preschool class ( we held her back a year). We are the ONLY people we know of that have a child like this, so there’s no one to offer advice. We have a small group of friends that love her and understand her and us, but we have also had so called “friends” walk away from us because they couldn’t deal with it, or didn’t have the patience to deal with the millions of emotions a Mom like us goes through. Thank you for this post. As a fellow special needs mom, I don’t feel quite as alone when others share their feelings and struggles.
Stephanie- our son had a stroke in utero, and has hemiparetic cp. I was grateful to find http://www.chasa.org (children’s hemiplegia & stroke association) they have a fantastic mailing list- and the patents on the list have children with many many different diagnoses- I wouldn’t be surprised if you couldn’t find one or two in similar shoes. It’s also filled with lots of information.
This article so hits home. My son is amazing, bright, funny, sweet, musical and crafty. He can also be quick tempered, antsy, and shouty. Thank goodness I was finally able to get us into see a counsellor. His negative behaviors were overwhelming- but with some emotional learning for him and some adjustments to the way I handled things (things that would work for his sibs just created havoc for him) and prepping school to be on the same page it’s gotten SO MUCH BETTER.
I’d recommend for anyone on this list dealing with bombastic behaviors to check out “the explosive child”. It truly helped me to reframe my view of his behavior. “children will do well when they are capable of doing well” I won’t paraphrase the whole book, but imagine getting upset with a child for not reading well when they have a learning disorder. It sounds silly- but some children are still behind the curve emotionally and need to learn how to deal with their feelings.
The other thing I’ve found that was fun & helpful for all of our kids was these cute little kimochis. They’re these stuffed animals with pouches, and they come with a bag of “mixed emotions” lol (they look like little circles with expressive faces/the word for that emotion on the back) when a child is feeling a certain way- they put the emotion in the pouch- and the goal is for them to share it with you. Great for kids with lower verbal skills to get stuff off their chests! And they’re super cute…
A great big hug to all us moms & dads. It’s so nice to know there are other parents out there taking lots of deep breaths…
I just noticed a few grammar errors in my comment, but I wasn’t able to scroll back up to review before I posted, and now I feel like a dork. Lol. Kind of like apologizing for a messy house when people walk in the door…bothers me more than y’all!
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Kelly- Thank you! I will definitely look in to that!
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Jeanine,
Thank you for writing this post. I think many people have a stereotype of what qualifies a child as ‘special needs’. They don’t realize that the spectrum is very broad and not all children fit into a nice, neat little box. People expect diagnosis, treatment, progress. People who haven’t met mothers like you. People who haven’t experienced this first hand. While I do not have a special needs child, I do have massive amounts of respect and love for moms like you who let us have a small peek into their world, so that we can understand, expand our perspective and our hearts, and so we know that our unsolicited advice is not always welcomed or needed.I’m sorry that you have had to tighten your circle, even if it is for the best, it still hurts. I wish you and your family all the best. Your daughter is so lucky to have you!
Oh my goodness!!! Jeanine, you could be writing my story!!! I am so overwhelmed with shock at how similar your story is to mine that I don’t even know where to start.
We have been having the same issues with my daughter to just turned 6yrs old. This has been going on since birth. My family, my adult kids, teachers, doctors, specialists, all tell me there is nothing there, nothing wrong. I have 6 kids. 3 before her and 2 after her. She is the only one with these issues. She was born with Beckwith-Wiedemann Syndrome and a year ago was diagnosed with Pervasive Perceptual Dysfunction. She is now in special ed at school for retention and cognitive delay. She was ranked at a 70% IQ and diagnosed with mild retardation. On the outside she seems fine, just like your daughter. She holds herself together at school. Is shy and softspoken when around other extended family. When I wake her in the morning it is a all out screaming and fighting battle. She is super strong and her dad and I can’t contain her. There is no such thing as time outs because she will scream and fight and will not ever give up. It is exhausting. When we go out in public she goes ballistic at times. If she gets set off we all it “her moods”, sometimes it takes hours or an all out “someone is trying to murder me” scene witch lasts for what seems like eternity till she calms down. Nothing provokes it, there is no pattern. When she comes home from school she is quiet and soft spoken when getting off the bus but when she gets in the house it’s like a switch is flipped and she goes crazy, screaming, yelling, hitting, kicking… oh my I could go on and on.
We tried to stick with resources the school offered in their special ed and behavioral program but now the specialist there is saying there may be more to her than we realize. The medical bills are piling up. We need to get her tested again.
I have always explained it that I believe she has tourettes and is bipolar. It is obvious to us but not to anyone else.
Thank you so much for sharing your story. I have this weird sensation in my body as I read your story and type this. Like finally someone understands!
I am interested in what types of treatments and tests you have been offered and ways to handle her. I know for us, there is no one thing that works, it’s always different.
I blog over at A Little Piece of Me salenalee.blogspot.com. I’ve been meaning to do a post about my story but it’s so complicated and so much to tell, I haven’t done it yet.
Thank you so much.
~Salena
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I’m just wondering if any of you have heard of NAMI. National Alliance for the Mentally Ill. It is actually for the family members to get support when they are caring for someone with mental illness. Hope this help. You sound like you are dealing with a lot. Jeanine is my cousin and I know the hardships she has undertaken. I hope you will contact NAMI in your area, they are all over the country and they are FREE to attend. Blessings, Debbie
Thank you Debbie for the info. We have not been given any resources at all from anyone. I will look into it.
Salena Lee @ A Little Piece of Me recently posted..Guest Post:: Laura @ Splendor ~ Project Hope
You are a strong, wonderful woman/Mother. My sister has children with special needs and I see first hand how hard and tiring it can be. Her best friend had this poem printed and framed for her. It describes you and other Mothers who raise special needs children perfectly…..
The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“This one gets a daughter. The Patron saint will be Cecelia”
“This one gets twins. The Patron saint will be Matthew”
“This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity”
Finally He passes a name to an angel and smiles. “Give her a disabled child”.
The angel is curious. “Why this one God? She’s so happy”
“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you”
God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness”
The angel gasps – “Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider any ‘step’ ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see…ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side”
“And what about her Patron saint?” asks the angel, his pen poised in mid air.
God smiles “A mirror will suffice”
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That story moved me so much, thank you for sharing it with everyone here ♥♥♥
Thank you so much for sharing that story! You have no idea how perfect it is! – Jeanine
Jeanine recently posted..Why Dr. Oz Makes Me Crazy
A truely inspiration blog and one that is heartwarming and yet heartbreaking at the same time. I’m not a mother of a special needs child, but I did grow up with a sister with special needs, she has downs syndrone. She is older than me, but I do remember my parents having some frustrating times when I was growing up. My sister at times could be hard to handle, but like your daughter, she is the most loving and sweetest person I know. She reminds me that simple things sometimes brings the most pleasure. thank you so much for sharing. xxx
Jeanine,
Much love. Muuuuuch love. From one to another.
Thank you for writing this post. It actually made me cry a little. My oldest son has severe speech delays and developmental delays and no one understands what I go through on a daily basis with him. He’s 3 1/2, and I feel like sometimes a monster takes over his body when he throws tantrums (he’s pelted me with stuff when I’m driving too), but he can also be the sweetest, most lovable boy on the planet. Although I don’t know what you have to deal with on a daily basis with your daughter, I know I takes a strong woman to be able to take care of a child with special needs, and keeping positive on top of that is an even bigger accomplishment. What a wonderful post. You sound like an amazing woman.
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I love the fact that you state, you are not going for the title “Most Messed Up Traumatized Mother,”! Lol ,I tell people that constantly. I too have children with special needs.My 13 yo DS has cleft lip/palate, and has had several surgeries, my twin 10 yo DS’s were born 4 months early and 1 has MR, developmental delays, and some minor brain trauma,which leads to him not being above a kindergarten level of academics, but he is socially amazing, and everyone loves him. The other twin has GAD,ADHD, developmental delays and pretty significant brain trauma, which leads to some pretty hard behavior issues. He’s not violent, which I’m extremely grateful for, but he does have a really hard time focusing, among other things, and due to brain trauma, can’t be safely medicated(which I don’t really want to do anyways). The amount of doctors, specialists, therapists, neurologists, and misc. helpers get so very confusing over the years! I don’t really know anyone else personally who has children with special needs, but I know my guys aren’t as bad as others. I don’t mention all of these things for people to “feel bad for me”, I mention them because I want other people to understand that I know what you are going through, and I find it amazing how these children that can cause the average person so much stress, are my cute, loving, amazing children. Every accomplishment they make, such as tying a shoe, or adding simple digits makes me extremely excited for them. I guess this long ramble was just to say you are not alone, and it makes me proud to know others are raising beautiful, amazing children too!
Thank you so much for your comment! Feel free to contact me if you ever want to commiserate. jeaninegriggs@live.com
Jeanine recently posted..Why Dr. Oz Makes Me Crazy
I just read this and every comment left. It’s a mother’s love that gets us through all of this. The ups, the downs, and all the ins and outs that are our day to day life; that no one outside our own skin could truly understand.
I’m a mom of 3, one a 15 year old with special needs and a teacher with lots of different needs in my inclusion classroom. I have a special place in my heart for moms who just keep on keepin’ on!
My main comment is this: God bless you for creating an environment in which your child feels safe to express herself. It’s hard to be that person, but that is why we are here!
Thank you for sharing!
WOW! Thank you for such a brutally honest post, you all are modern day gladiators. The fortitude and ‘character building’ that parents like you posses is indescribable, hats off to you and your husband!
I related to every word and I too am learning to share my experiences, recognizing how much it helps others.
Our middle child, a son has autism. He has the great fortune (and misfortune) of looking ‘normal’ so that alone is confusing to people, coupled with the fact that I am married to a giant (6 ‘4, 250 lb man) therefore our 5 year old son looks 7 or 8.
Your coping box is identical to mine (not surprising!) –is it okay if I add a few things that have really helped me?
-Recognize that despite all the challenges, your special needs child is a gift to you, not the other way around.
To feel you are the gift to your child or there to carry them translates to an eternal mental verdict that they are a burden. You love them, but it is hard to enjoy or even like a ‘burden’. Whether you believe in God, the universe, karma, light…accept that you’ve been gifted with something very special, unique and meant specifically for you. This will help you appreciate and enjoy the subtleties of their personality; the really beautiful moments you share and make the tough moments feel less overwhelming.
- Recognize they are on a journey, just as you had a personal journey.
I had paralyzing fear over my son being persecuted by peers, kidnapped (due to his lack of vocal ability and escaping/ eloping behaviors) and victimized, hit by a car or worse and I’d go through this ritual every morning all while wrestling with him to get dressed and trying to pump myself up enough to release him to a school of strangers. How can anyone function like that? You can’t. I was ‘normal’, yet my childhood wasn’t perfect, so why would I expect his to be? My job is to love him, advocate for him and help him reach his fullest potential. I cannot control every aspect of his life – accepting this is what enabled me to ‘let go’ and it has been an amazing shift.
-Stop apologizing for their behavior/ fits or any manifestation of their disorder.
Both my son and I have been called many very hurtful names as a result of him getting overwhelmed or frustrated in public. It is wearisome enough when your child is inconsolable but it becomes really humiliating if you get caught in a cycle of apologizing for the ear piercing screaming/ food being thrown/ ‘baby talk cursing’/ spitting/ flailing, etc. If I do apologize, now it is in a way that holds ‘normal’ people, especially adults accountable if they have a visible reaction or say something rude to me. They are after all the ‘smarter’ ones, right? Or are they? :)
“I’m sorry it made you uncomfortable when he tried to give you a hug/ walked over to your table/ touched your hair/ spoke to you in babble unsolicited. There are a lot of really special children like him everywhere now, so you should probably work on your facial expressions so people don’t think YOU are strange or being cruel to a child.” Smile and walk away.
You are so right. Thank you for sharing this and for reminding me of where my focus should be. I agree with you 100%. My daughter is exceptional just the way she is and I need to focus on her and being there for her in whatever she is going through at that moment and stop worrying what other people think.
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Thanks for your thoughtful comment. It’s nice to know there are others out there who understand me. – J
Jeanine recently posted..Why Dr. Oz Makes Me Crazy
Dear Jeanine, thank you for sharing your experiences and your heart with us.
I’m currently near the end of my “official” training to be an aide and reading this has opened my eyes to even more. I’ve worked with with young children with disabilities, but none like your wonderful daughter. Every day I’m learning more and more about the different types and every day I’m seeing the world in a new way.
Thank you again *hugs from one mum to another*
Jeanine
You are strong and smart and your daughter is blessed to have you as her mother. Your post was wonderful and inspiring. Namaste
Thank you so much for sharing your story. I can’t agree with you more about supportive people in your circle. Two of my very best friends are mothers who also have special needs children. I know that when I go to their homes for playdates, it will be loud and crazy and fun. They won’t care if my daughter spills her drink several times. I won’t care if their daughter repeats the same three word phrase the entire time or if she has to check the mail box every three minutes that we are there. Good friends are so very, very important.
Your story has touched my heart. I wish you and your family nothing but the best. Cheers & Namaste!
I wish the best for you and your family. You are strong and amazing. Thank you for sharing. I’m sure we all learned something from your post.
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I don’t have any children with special needs, and I don’t even really know any children with special needs. But I do know good writing. Your piece was very well written and I thoroughly enjoyed it.
I also know someone who has their head screwed on straight when I see one–and yours appears to be on squarely. Your family is fortunate that they landed with you. Some sideways heads would not have been able to navigate their way through the difficulty as you have.
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Thank you so much for your compliment. It means a lot! I will check out your blog. -Jeanine
Jeanine recently posted..Why Dr. Oz Makes Me Crazy
Wow that is quite a cross you have to bear, thankfully your coping mechanisms are not drugs and alcohol, or another dangerous behaviour. Kudos for coping and keeping your chin up in this most difficult situation. Best wishes to you and your daughter for the future.
Thanks for writing this. My best friend’s daughter has epilepsy, which most people see as a kind of benign ailment, but in fact it really isn’t. Her daughter has learning, speech and physical delays and relies on some pretty scary drugs to keep the seizures at bay. Her circle has shrunk tremendously and like you, her family is often in denial and not people she can lean on. Her life has changed dramatically since her daughter’s epilepsy and she has remained strong with a combination of antidepressants and getting involved with Susan Axelrod and http://www.cureepilepsy.org/home.asp.
I wish I could do more to help.
I often think about what it means to be a parent of a special needs child, but the thought is too overwhelming for me to truly dive into. My nephew is a special needs child and I cannot imagine what my sister-in-law goes through every single day, despite seeing a good portion of it over the years. You wrote this with such clarity, and it makes perfect sense to me why your daughter is wise beyond her years. She’s created her own little coping box, most likely from seeing how her parents handle stressful situations. Nicely done:)
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I have a 13 yo stepdaughter with Tourettes, severe anxiety, and Type I diabetes. Add to that a split home, going to see her extremely controlling mother every other weeke. And honestly, I don’t handle it well at all. I have been told so many times to love her like she’s my own, but that is not working for us. I think I need to talk to someone about things to fill my coping box. I nearly came unglued when I read that other family members were in denial about your child’s condition. That is exactly the sort of behavior that my husband has been dealing with for years with his family and I can totally see the damage it has done to her current emotional state. Thank you so much for posting this.
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I don’t have a special needs child but I do have a depressed, bi polar boy who has tried every patience I’ve had this year. Could be because his daddy was out of state in Iraq or whatever. But, I have to say Wow, you are my hero. Thank you for the honest, soul bearing post.
I do know the pain of having your parents not believe you, and your circle being incredibly small. I deal with this too. My daughter has ADHD with a side of mood disorder thrown in and I have a little box too, though I don’t need my box quite as much as you need yours. We are one of the lucky ones who have found medication that does go a long way to helping her control her behavior and think through her actions before acting out on them, etc.
But you? Dealing with all you are? Yes, you are a hero, now mine, too.
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Your daughter is blessed to have you as a mom–just as you are blessed to have her and see all the positive things about her. I am so sorry you don’t have more supportive friends. I just don’t understand how adults can behave this way and then spread it to their children. There is zero reason for not being kind and at least tolerant.
We are about to begin testing for our own son, 9. He’s gifted but I just know in my gut he’s got some neuro problems as well as anxiety disorder. I’m definitely not comparing myself to you and don’t mean in any way to belittle the enormity of what you’re going through. But *knowing* that moms like you are out there and not only surviving but thriving because that’s what you have to do–it helps me know that eventually we will find a “new normal” and forget the tears and stress and worry of right now.
Thank you for sharing your story.
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Ah, it is my strange conceit that I know *all* the special needs parent bloggers, and then I find someone wonderful like you. You have written so beautifully and movingly of your daughter and the challenges you and she face. I am glad that you have found both support and a functional coping strategy. It is also clear in every word you write how much you love and appreciate your very special child.
I have twin 9 year old boys, one on the autism spectrum and one with mild ADD (like me!). I can only imagine how hard it would be to have my parents and other family members denying my kids issues, to not have their support. Although my father has now passed, and my elderly mother is frail and fading and I am HER caretaker, a few years ago when they were still (relatively) robust, the first words out of my father’s mouth nearly every time I spoke with him were “How is Jacob (my autistic son)? Is there anything new going on with him? Is there any new therapy you need to try? What can we do to help?” And this meant the world to me.
Also I notice that the intro says you have two daughters, and I am assuming that your second one is typical — or typical-ish, as I call my ADD son in comparison to his brother. One thing we mightily struggle with in our house is the relationship between my sons and how Jake’s autism affects the whole household and sibling/family dynamics. It’s not good. It’s such an issue for me that I started a weekly guest post series on my blog called “Special Needs Sibling Saturdays” for people to talk about how having a special needs child affects the sibling relationship. Please come read (and might you be interested in writing one too – contact me).
Finally, are you aware of Adrienne of the blog “No Points for Style” – http://www.nopointsforstyle.com – her youngest son has severe mental health issues as well as other issues, and is explosive and extremely difficult. She is an amazing writer and I think reading her will help you feel less alone in your situation.
I am so glad to have found another lovely special needs parent who blogs (and who blogs about other things besides being a SN parent, as do I). Off to read you now – well, after I get my 2 kids off to their 2 separate schools and stop by the pharmacy and go visit my mother in the hospital that is…
Varda (SquashedMom) recently posted..Fuchsia
You and all the moms who commented are my inspiration. Truly. I do not have a special needs child — just 3 small kids and sometimes little in the way of coping skills. Thank you for sharing your love and wisdom. I send you very good vibes! :)
Wendy @ mama one to three recently posted..Fear and Writing
I really enjoyed reading your article and will look up your blog. My son is hearing impaired which compared to your daughter sounds simple but I don’t think much differs in the heartache involved. I love the box idea and may well use it myself, there are def people and things that will go in it and the same that won’t. Our parents have also been very in denial and not always helpful so that part of your post touched me. Thanks for sharing. x
Ali recently posted..The edge of reason
I’ve just read your post and love what you’ve written. Both my children have ‘additional medical needs’ and the journey of learning and staying positive is one that brings all sorts of character building experiences for all of us. Currently we’re sharing our home with a menagerie of imaginary friends who are the coping strategy for my son and dealing with the confidence issues of my daughter, who looks about 11 but is a mere 6. I’ve discovered that blogging is a wonderful tool in my coping box and reading about how other people ‘just do it’ is fantastic. We’re all different but we share so many things. Thank you x
Keep writing, Jeanine…Keep on keeping on! You’re an absolute inspiration and the world needs you!
You have made my morning. You are truly an inspiration. Being a mom can be a very lonely task….as much as we love our children it is hard. Thank God for friends and some family (I share the same frustration with the lack of support from my parents) and for humor in our lives.
I am truly in awe at how you have inspired me. That may be cliche but you are an example to be followed. :)
Frannie recently posted..Reevaluating the path
Thank you so much! Sometimes I feel so alone raising a special needs child. My child just started school and when he gets home, he erupts too. It’s so hard to take him places, I hate the stares and headshakes I receive. I’m taking it one day at a time… Thank you again.
My heart goes out to you. I hear you about the “character building”, I personally think I’ve had enough! I had a special needs child that has since past. I know the specialist, the hospital visits, the doctors, being the warrior! There is no special words to say because we are all different as our situations are different. I’m trying to hold o. To my coping box as now I have yet another hurdle to tackle. I k ow what it feels to be alone, with others not caring or helpi g with the issues at hand, which just means you’re front and center all the time. You’re not alone ;) http:postpartumom.com is my blog, I’ll check out yours and most likely be following you
MangoChutney recently posted..My New Dog…And The Scuffle At The Park
She was born out of love. As long as she continues to give love, be happy.