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Posts Tagged ‘special needs parents’

Gift Ideas For Special Needs Parents and Teachers

256px-Red_Christmas_present_on_white_backgroundThe holiday season is in full swing – does anyone else feel like Christmas sucker-punched you this year? 12 days away? 8 days left of Amazon Prime free 2-day shipping? 6 school days left to show the teachers you can come up with something better than a #1 teacher mug? 16 teachers, paras, and therapists to sincerely acknowledge without taking out a second mortgage?

Don’t panic – I stumbled across a site that might help you out. Click here if you’re looking for a low cost but high quality way to spruce up those gift cards. You Are Strong, You Deserve A Break, You Are Blessed, You Make A Difference… these are just a few of the 28 “Love Notes” found on this site.

You can write them into a card, frame them, incorporate one into a craft with your special needs child, engrave one onto a pencil box (or mug), or use them to inspire your own words. If you’re looking for something slightly more elaborate, you could always wrap one of your favorite love notes around one of these and put some of this in it – what busy parent or teacher wouldn’t appreciate an easy, beautifully put together meal? No, I’m not hinting! Unless my husband happens to be reading this…

Poems And Essays For Special Needs Dads

As many of you have noted this month, there isn’t exactly a plethora of stories, poems or reflective words about special needs fathers out there. Since Father’s Day is fast approaching, I figured that now is as good a time as any to post what I’ve found so far.

1. God Sent To Me An Angel, by Paul Dammon

2. My Daddy, My Hero by Cheryl Veenstra

3. To Whom It May Concern, by William W. Joslin

4. The Silent, Constant Scream, by Pat Linkhorn

5. Song For Bobbie, by Marv Borgman

Top Ten: Emotions Experienced As A Parent Of A Special Needs Child

In the past when I expressed worry over something about James, I often heard as a reply that every parent worries about their kids, special needs or not. “You won’t have to worry about James breaking curfew, doing drugs, or driving a car,” I’ve had said to me. “Every parent has worries, regardless of if their child has special needs.”  And there is a lot of truth behind those statements.

But I could never shake the feeling that somehow the car and curfew and even getting-into-trouble worries would be worth not having to worry about James’s surgeries, safety from predators, growing old alone, his lifespan and long-term care needs. Now as a parent of two more very typical children, I am even more certain that the emotions involved are indeed different. Special needs or not I love all of my children immeasurably, but the feelings of joy, sorrow, pride, fear… these are all experienced in very different ways regarding James or my younger two.

Top Ten: Emotions Experienced As A Parent Of A Special Needs Child

1. Pride – Think about the pride you felt at your children’s first steps, first words, at the A on their spelling test. I felt that same pride when James walked at 2 1/2 years old, spoke his first word after 4 years (and 4,000 hours of ABA therapy), and got a 3 out of 20 on his math test (up from a whoooolllle slew of zeroes). Yep, that very same pride – times a jillion. And to make it even more complicated that pride was mixed with other emotions like relief, surprise, joy and a little bit of sorrow.

2. Frustration – Ever feel a flash of annoyance when you have to repeat yourself to someone for the third time? How about the eighth time? Or the twelfth time with your hand on their shoulder? How about repeating everything (truly, everything) you say all day to one person anywhere from twice to more than ten times, and having even your raised, angry (semi-hysterical) voice ignored as if you don’t exist? And how about knowing that your annoyance is misplaced because the person “ignoring” you truly can’t help it (most of the time, anyway)?

And how about waiting on hold to make a doctor’s appointment or discuss that medical bill that seemed a teensy bit high – we’ve all felt that frustration, right? How about doing that for 8 different doctors (for just James) and having to hang up every time your wait time gets too long because there are 3 kids at home dancing in circles around you?

3. Envy – I no longer care how it sounds. It doesn’t make me love James any less to admit that I sometimes envy other parents when I watch them scheduling playdates and sleepovers for their kids, dropping their kids off at an activity (as awesome as they are we have to stay in the vicinity for most of James’s activities, ), or helping their child carry a huge science project into school. I also envy the kids who are riding the subway or walking to school alone, who are riding their bikes or going to movies with groups of friends, who effortlessly scale the monkey bars or join in a game of kickball, who can walk through Central Park carrying a balloon.

4. Sadness/grief – There are obviously more sad memories in the span of James’s life than I care to recount, and if you have a loved one with special needs I am sure you have a few doozies tucked away yourself. It’s one of the invisible bonds between special needs parents – the knowledge that we have all experienced deeply sad things and understand that when it comes to a disabled child the stages of grief are cyclical. For me, no matter how wholly I’ve accepted James’s disability, every stage of his life brings along as many new sorrows as it does joys.

One of my saddest moments regarding James recently was watching him through the fence at school at the end of the day. The fifth graders were outside for a bit of extra recess and I spotted James across the courtyard, valiantly following a group of boys from about 10 feet behind. Once in a while the boys suddenly swerved or started to run away from him and every time James would do his best to keep up, even though it was obvious that the boys were not interested in having him as a shadow. James trailed them this way for the last 10 minutes of the school day, smiling, trying to talk to them, blissfully unaware that he was unwanted, and equally unaware that his mother was watching him, silently loathing those boys while deeply grieving for her own.

5. Gratitude – One of the most common things I’ve said over the last decade is, “it could always be worse.” And though cliche, it’s absolutely true – despite our struggles, the bottom line is that every family has problems and many are not as fortunate as we are. I’m grateful for the patience, generosity and empathy I’ve learned from having James. I’m grateful to other people who will never even know how thankful I am for their kind and giving spirits toward James. And yes, I’m grateful that it’s not worse.

6. Guilt – First there’s the guilt that comes along with feeling the aforementioned frustration and envy. Then there’s the guilt I feel for letting James play on his ipod because it”s easier than trying to force him to play a game with me, the guilt of giving him meds I’m not 100% sure are working, and the guilt from lying to him about why we can’t have his “friends” over to play every week – you know, those “friends” he was following around at recess.

7. Worry – I mentioned that someone said that at least I wouldn’t have to worry about James driving a car. Driving a car? How about getting hit by a car? Worried about making friends at school? How about not getting picked on horribly at school? Finding someone, getting married? How about worrying that if he gets married he might have children, and who will be taking care of them? Worried that your child won’t make enough money? How about worrying that when he gives someone $20 for a banana he won’t expect change back? Worried your child might end up doing drugs? How about the side effects of the drugs he’s on already?

8. Inspiration: Nothing comes easy for James. Not grades, sports, friends. Then there’s the surgeries, pills, doctors, therapists, and let’s not forget the amazing list of phobias. But James is still made sincerely happy by the small things in life. Somehow, James has learned the most important lesson of “look for the silver lining.” I can have another chicken nugget? Thanks, mom! I love you. or We can read one more chapter? Tonight? Awesome! And did you catch how much he loves mustard (see last week’s Monday Minute for a recap)? Watching James get through the day and still smile so easily is a true inspiration to me.

9. Anxiety – is different than worry. Anxiety is what makes my stomach tighten every time I walk by a balloon, even when James isn’t with me. Anxiety is what prompts me to check and recheck every aspect of our family vacation to make sure it is 100% special needs friendly. Anxiety is what keeps me up the entire night before James starts a new school year, typing out all of the “must know”information for the new teacher. Anxiety is the best word to describe how I feel, listening to James thrash and scream hysterically for “help, Mom” from the other room while he is having his teeth checked, his blood pressure taken, or God forbid getting a shot.

10. Hope – More than one therapist told us (and was promptly let go right afterward) that James would never talk. James’s kindergarten and first grade teacher told us flat out that even though James was starting to recognize sight words, he would never learn to read phonetically and would have very limited reading skills at best, so not to get too excited (we couldn’t fire her). We sat in an IEP meeting full of educators who informed us that James would be “eaten alive” in a NYC public school. As you can see from the Monday Minutes, James is speaking juuussssst fine. He reads at grade level and is completing his fourth year in the NYC public school system, with only a couple of bites missing. So when someone asks me if James will be unemployed and living at home with me when he’s 40 (much more tactfully, of course) I can honestly say, I hope not!

Patience and Foortitude, Part 5: Machine Gun Mouth

October 17, 2011 1 comment

It’s hard to believe James didn’t speak until he was four and a half years old.

Sometimes I have to reach deep within myself for a bit of that initial indescribable excitement I felt when he said “up,” “pluh” (please), and “muh” (more). Mere months later, after we had started to give up hope and were looking into assistive communication and teaching sign language, he was stringing words together and was well on his way to being what we refer to as “Machine Gun Mouth.”

I don’t know much about guns, but whenever I envision a machine gun I think of a blast of ammunition spraying out and random bullets hitting whatever people fall into their path. Replace “ammunition” with “conversation” and “bullets” with “words” and you have Machine Gun Mouth, aka my son James.

You probably think I’m exaggerating, or at the very least being a little bit mean. Unless, of course, you’re one of the people who spend a lot of time with James in which case I am willing to bet you chuckling at the accuracy of the above description.

I’m often walking 3 kids back and forth to school, so I’m not going to go to the effort of taping our conversations. But recently one morning my husband stayed home with the babies while I walked James and I was finally able to record about 6 minutes worth of an actual trip to school on my cell phone voicemail.

Without further adieu, here is James aka Machine Gun Mouth (my responses are in italics):

So do you love me? I love you so much. You’re the best mom (hand up for high five).

James I love you but I want you to change it up today – you can’t wake up so grumpy every morning.

I’ll change it up. See? (big smile) See? I changed it up. Okay, good.

See mom? I changed it up? Mom, look I changed it up. Yes I see James – thank you.

Mom? I’m going to change it up. Good, now stop repeating yourself please.

Oh, that’s cool. What? I don’t know. What’s cool? I don’t know.

I love you so much. Thank you. Do you love me so much? You know I always do because I’m your mom.

So, you know what my mind is thinking? No, what? How good I’m going to be today.

It’s a beautiful day today.

James, keep up. You don’t want to be late.

Mom, you’re so pretty. You’re the prettiest mom. Thank you. What do you say to me? What do I say? That I’m the most famous boy. Oh, really? Yeah, I’m the famous boy and you’re the prettiest mom.

Call of duty 4 the lethal war. What? Call of duty 4 you know, for ipod. No, what about it? Its call of duty 4, you know? The lethal war. What about it James? Why are you talking about it? Noah plays it in Schenectady (distant cousin seen once every few years) and its a shooting game. Shooting games are bad. Why are you thinking about this? Call of duty 4 is for ipod. ipad or ipod? ipod. Look at that cute black dog. Yeah that is a cute dog. Remember hally tosis and he breathed on the robbers and knocked them out with his tongue (book we read, last year)? Yeah, good old hally tosis. it was so gross, right? and the robbers went “blah” right?

Look, there’s a baseball. Baseball, huh? See it, mom? Mom – baseball is cool, huh? yep. you know, baseball. I play baseball like this (throws a pretend ball) on my team, right? Right, mom? James, look where you’re going! Don’t walk until you see the white walking man. Where do Dad and I play baseball? James, stop talking while you’re in the street – right now. Where? Do we play at Riverside Park? No talking just walking! James eyesontheroadrightnow!! Okay.

Oh, we can start talking again. Whew, we made it across the street!

Mom. mom.  yes? mom. what? mom. James spit it out. Um… I love you.

So today is a nice day right? yep.

I love you so much, do you love me so much? Yep.

It’s a nice sunny day. right mom? right? yes James.

Treat ’em right this Halloween night! (said while pointing at a passing stranger with a small dog who looked at us strangely and hurried away) What did you say? You should treat ’em right this Halloween night. Right, mom? (starting to laugh despite myself) Where did you ever think of such a thing? I learned that from Duane Reade.

So, what do you do on Halloween? Do you trick or treat? trick or treat, right? you know? what do you need? need? you know? oh, to bring a bag for candy? and what do people give you? mom? what do people give you? mom, do they give you candy? James, stop at the corner. James, right now! You need to look where you’re going – do you see the orange hand?

Now, this conversation is when it’s just James and me and yes, that was really only about 6 minutes worth of a 15 minute walk to school. Okay, go back and try to read all of the following while singing “Wheels on the Bus” and “If You’re Happy and You Know It” and you will be able to experience a tiny bit of what it’s like twice a day for me when I have the other two kids as well. If you can add your own screaming baby track in the background that’s an added bonus about 25% of the time.

Transcribing this conversation was eye-opening for me in some ways. I only said “I love you” back sometimes. I bet that looks terrible! But at what point is it okay not to say “I love you” back? The fifth time? The twentieth time? How about the fiftieth time – in one day? When you consider that James said “I love you” at least three times in six minutes you will realize that this is absolutely no exaggeration. I also noticed that many of my responses were 1-2 words, the way I respond when distracted (or trying to get out of a conversation…).

I know, I know – this is my child, for crying out loud! I’m supposed to say I love you and simultaneously be thrilled at what an affectionate little boy I’ve raised. I should also be extremely grateful because there are plenty of children who did not start talking at 4 years and are still not able to talk at 24 years old. And most of the time I am grateful, or at least cognizant of that fact, truly. But sometimes, I long for a quiet, peaceful minute, or at the very least a conversation that I can follow and be engaged in.

I’m not saying there is anything to be done about this “issue,” but a little venting goes a long way toward refilling the Patience Tank, right? As it often goes with family and loved ones, we all do things that annoy the others from time to time – biting nails, leaving dirty socks on the floor, dumping out ALL of the legos. My husband, who loves me dearly, would probably tell me not to cast the first stone regarding excessive talking.

Or should I say spray the first bullets?

Opportunity For Parents Of Autistic Children To Be Featured In A Documentary

I received an email yesterday that I thought I would pass along. Parents are currently being invited to be interviewed for a documentary about autism. Part of the announcement is copied below, along with a link containing more details:

The main focus of the documentary is to learn about the issues created for parents and families as a result of caring for a child with autism. We invite all parents of any child with autism to participate, regardless of where the child is on the spectrum (ex, low or high functioning).  It is a requirement that fathers be a part of the interview. Parents do not necessarily have to be together, although we are interested in having both parents participate. All replies are strictly confidential.

The following groups of parents will be examined in this documentary:
1)      Group 1 = Parents, 27 years old and younger, who have just
recently diagnosed that their child is on the autism spectrum.
2)      Group 2 = Older parents, 28 years and older, with a young child
recently diagnosed on the autism spectrum.
3)      Group 3 = Parents of a child with autism currently at the age of
puberty.
4)      Group 4 = Parents of adults with autism – whether raised at
home or in a residential facility or institution
5)      Group 5 = Parents of any age of undiagnosed children with a
strong suspicion that the child is on the spectrum
6)      Parents of any age of multiple children on the spectrum,
regardless of age

Click here for more information about the documentary. Please have any parent interested contact Alexandra Meis, the Autism Treatment & Advocacy Center Coordinator at ameis1@bronxleb.org or Autisticdocumentary@gmail.com.

 

Patience and Foortitude, Part 3: Just Foortitude This Time, With Special Guest Appearance By Windex

As I picked up pieces of mushroom from the bathroom floor, I noticed that my foot was bleeding ever so slightly – I must have missed another tiny sliver of glass. I silently (okay, not so silently) cursed Corelle, makers of the supposedly unbreakable dishware. The only thing that kept me from becoming hysterical was brainstorming potential titles for my post this evening, because I sure as hell had a story to tell.

It started off as a Medium kind of day. James had a medium morning, not thrilled to get up but not upset enough for any theatrics. My 2 year old discovered bras today, and spent the morning putting bras on herself, her head and every stuffed animal in sight. Only medium cute after she got two clasps stuck in her hair and bent them – I don’t have that many bras. My cranky, crying, screechy, teething 8 month old was having a not-so-great day, but one out of three isn’t that bad – it’s almost a given that at least several days a week, one of the three kids is going to have a not-so-great day.

So let’s fast-forward to see how things got from Medium to Extreme (see Patience and Foortitude Part 2: Extreme Parenting).

3:00pm

I picked James up from school and we paid our fifth trip in a row to Walgreens. The pharmacy had misplaced one of his prescriptions I had dropped off the week prior, and because I might sell Vyvanse on the black market we had to have a whole new prescription written and mailed in. The pharmacy called our neurologist (who for now shall remain nameless) last Tuesday, June 7th, but apparently they did not mail a new script until Friday, June 10th. Monday, June 13th rolled around – still no script, and now I had run out of Vyvanse for James. So, since Monday we had been making a daily pilgrimage to Walgreens to check for our prescription, and when it wasn’t there, pick up a single pill to tide us over.

Today was no different – the mail from “Friday” still had not arrived. We waited for 15 minutes for our single pill, and I left with a medium amount of frustration. Let’s be honest, 15 minutes in “Multiple Kid Time” really feels like at least an hour. I mentally added another 30 minutes because I had a fussy teething 8 month old baby strapped on.

3:30pm

On our way home James stops to stare at a beggar sitting outside of Duane Reade. The man calls over to him and James, instead of walking away or toward him, just kind of stands there and stares. I give him a little poke in the back to keep things moving (my 8 month old is still crying and my 2 yr old has stripped down in the stroller to her diaper at this point) and James, in his usual style, reacts as though I  have stabbed him.

He is still kind of grumbling about it as I carry the stroller into our building. An older woman is holding the door and as we walk through James explains to her, “It really hurt when my mom nailed me with a nail in my back.”

4:30pm

Homework done after only an hour of prodding. Baby still screaming – nursing, laying him in the crib, carrying him around, even the plastic cup of water is not distracting this guy. I can tell the noise is getting to James because he repeatedly claps his hands over his ears, none to gently. For those of you who have not had the pleasure, my 8 month old sounds eerily like an amplified tea kettle when he is screaming. It is truly an ear-shattering experience for anyone, let alone James and all of his noise issues.

5:00pm

Husband working late for the 6,893rd day in a row (in “Multiple Kid Time” this is not an exaggeration). Despite continued screaming, I try to make the best of things and let the kids help me cook dinner. James and my 2 yr old get into a fight over the pasta and spill the full strainer into the sink. I put some pasta on paper plates for them and set them up at the other counter. The sink looks clean enough – pasta goes back into the pot.

5:20pm

I walk into the kitchen where my 2 yr old is working on her second banana. She looks up with a guilty expression on her face. I see more pasta and half a peach on the counter. There are banana peels on the floor and banana juice everywhere. Banana juice? Wait a second… my daughter has already dashed from the kitchen as I realize what has really happened. There is a pair of pink underwear on the kitchen floor too. Banana juice, good grief – I must be losing it. I get the Windex out.

5:35pm

The baby is finally down for a nap. Kids are helping to set the table. My daughter grabs a stack of bowls and runs out of the kitchen. “Come back here,” I call. “We need to put food in those bowls!” She tears back into the kitchen and promptly drops the bowls on the floor, where they all shatter. In an effort to escape the situation, she runs back out of the kitchen, through the broken glass. Corelle, I am very disappointed in you.

Miraculously, her feet are untouched. I wish I could say the same for mine.

5:55pm

Glass cleaned up – I even re-Windexed the floor after sweeping to make sure I got all of the tiny pieces. Baby still napping – hooray! I feel bad about losing my temper over the bowls so we make Shirley Temples together for a special treat. We sit down for dinner – James and his sister fight over seats and the last remaining glass bowl. I eat from Bob the Builder plasticware.

6:15pm

I go to start the shower for James and stop dead when I open the bathroom door. There is poop on the floor in front of the toilet – ugh. I hear my 2 yr old running away as I call out,” Who had an accident?” (I would’ve run away too at this point.) Apparently she has decided to clean out her own potty chair and this is the result. I go back to the kitchen for some plastic  bags. And the Windex.

6:30pm

I am sudsing James up in the shower when tragedy strikes. Some water gets into James’s ear! He goes crazy and the shower now becomes a soap-crazed wrestling match. Shouts of “You’re getting me wet!” and “Don’t touch my ear – you’re hurting me!!” can be heard throughout the apartment, and there’s no telling which one of us is yelling what.

The baby is woken by the shower extravaganza.

6:31pm

I carry my 8 month old out to the dining room. My 2 yr old is sitting at the table with a bottle of Windex and a roll of paper towels. The table is covered in pools of clear liquid. The bag of bread and tub of butter is covered in Windex. The mail is soaked through. The dishes are wet. I put my daughter into time out, put the baby down and get to work on the mess – they both immediately start screaming.

6:45pm

I grab the baby and go to get James out of the shower. James is happily standing in the shower coating himself in daily shower cleaning spray. He is pretending it is a gun of some sort, and seems kind of annoyed when I interrupt (very loudly) “What are you doing???!! Put that down!”

I re-shower James as my 2 yr old comes in to poop again. This time I am there to empty the potty chair for her. Or so I think. As I straighten up with the bowl in hand (and baby in the other), my daughter tackles me, screaming “I can do it my big girl self!” The bowl spills all over the floor. I put her back into time out, send James to his room to get dressed, and put the baby down again. Complaints all around. I go get the Windex.

7:15pm 

We are all seated back at the table, playing a makeshift version of Pictionary before bed (I am working on a post that explains the modifications I make to regular boardgames for James). James draws a great insect and my daughter makes four circles for “Four Eyes.” They both guess that my golfer is a woman sweeping. I fill two little cups with mini-marshmallows as a joint dessert/prize for kicking my butt. I feed the baby a late dinner of yogurt and pasta.

7:45pm

I am sweeping up the kitchen and dining room while my daughter follows me around whining, “Hold me, mommy, hold me.” I am already holding her brother. I compromise by singing all of the songs from The Little Mermaid as I sweep. James joins in – it is a sweeping success.

8:00pm

I give James his medicine and send him to wait in his room while I put the leftovers away. My 8 month old is quiet now, as long as I am holding him. As I silently congratulate myself on my one-handed mastery of packing food away, he casually swats the tupperware, sending it crashing to the floor below. Pasta, sausage, mushrooms, onions and tomato sauce are everywhere. I place him on the floor. He starts to cry while simultaneously eating as much pasta as he can get his hands on. I get out the Windex.

8:30pm

We are all camped out in James’s room while I read The Magician’s Nephew to him. Against direct orders, my daughter is repeatedly jumping off of James’s bed to make her little brother laugh, and is succeeding. She accidentally kicks him in the head. I put her in time out. I finally finish the chapter with two babies in my lap, sniffling.

8:35pm

I tuck James in and we all have an “air-kiss battle” for a few minutes, where we see who can smack who out of the room with the best air-kiss (think Mario meets Star Wars). James wins, much to my daughter’s dismay. One kid down. My mood lightens considerably.

9:00pm

I am laying in bed with the two babies, reading Goodnight Moon for the third time in a row. There is a light at the end of the tunnel – I’ll read this book sixteen more times if it means more peace and quiet followed by sleep. Thankfully, it takes only one more read.

9:45pm

I sneak out of my room and duck into the bathroom. I step on something soft and squishy. I take a deep breath and look down. It’s a mushroom. Huh? On further examination I can see at least half a dozen sliced mushrooms on the bathroom floor. I also notice a red smear on the floor and realize it’s coming from a piece of glass still stuck in my foot from earlier. I grab the Windex.

 

PlayAbility Toys Discount for Foorce Readers!

I’m very excited to be able to share a 15% discount from PlayAbility Toys with my blog readers! The best part is that you can use the code as much as you like for an entire year! I’ve already started my shopping – there are some good summer supplies and gift ideas on their site for the special needs child in your life. Even if you don’t have a special needs child in your life, I encourage you to check out their site, http://www.playabilitytoys.com, to see some of the unique items they offer.

Below is a little more about the company and their products (info provided by Playability Toys):

PlayAbility Toys encourages children to learn, laugh, and play!  Our award-winning toys and games are designed specifically for children with targeted special needs.  We are dedicated to working in partnership with special needs families, therapists, teachers and supporting organizations to develop and offer the highest quality and most entertaining toys possible!  The positive impact PlayAbility toys have been making on the community is clear from the awards received for the Rib-It-Ball and See It & Sign It, as well as, Buddy Dog as a “Parent’s Choice” winner and “Best Toy” for children with autism spectrum disorders.Children of all abilities love the multiple sensory experiences they get from our toys and we are confident yours will too!

We are pleased to offer a special 15% discount on all purchases made through our website.  Please enter code “PlayToys15” at checkout.

Happy Shopping!