Welcome to My World
26 Feb 2011 Leave a Comment
Hi! My name is Carri and I am joining in mommieventures to blog about the effects (good and bad) of being a mom to a child with Medical/Special Needs..
I am a wife, a mother, and I have a part time job…so I have a lot on my plate. My husband, John, was my high school sweetheart. We have been together for 7 years now. My oldest child is Brian. I had him when I was 21 ears old and a newly wed. He is now 3 years old. My other child is Elizabeth and she is almost 1 year old. Brian was born at 37 weeks and weighed 8lb 1oz. Brian was born with a cleft lip, airway deformities, blood disorder, and now as he is getting older he is having language issues and behavior problems. They are questioning a diagnosis of Autism. Elizabeth was born at 35 weeks (preemie)…and weighed 7lb 8oz.
I hope that as I blog about our journey others will read and see that they are not alone on the path life has given them. We all love our kids and hope we are doing whats best for them. Having a child/friend/family member with special needs takes MUCH patience, love, strength, and ability to know when we need help.
-Carri
Poem that really touched me
31 Mar 2012 Leave a Comment
Have you ever?
by Tassy Tomlin
Have you ever wished you could hold and receive affection from your child?
Have you ever wished your child would look at you the fifth, sixth or seventh time you called his name?
Have you ever wished he would call you Momma, Mom or Ma?
Have you ever wished your 2 year old would tell you NO?
Have you ever pointed to 8 different boxes of cereal to see which box he wants because he can’t tell you?
Have you ever wondered why the things he does say, he says over and over?
Have you ever been blessed with a smile from ear to ear because you understood what he meant the first time he tried to tell you something?
Have you ever let him eat cereal all day long because that’s almost all he’ll eat?
Have you fixed pizza ten or more times a week because he’ll eat that too?
Have you ever washed that special plate and bowl 2 or 3 times a day because he has to eat off of them?
Have you ever had to get up from the table twice in one sitting, to wash his precious hands because they got dirty and he won’t eat until they’re clean?
Have you ever let your child wear the same shirt for 3 days in a row, thanking God at least he’s wearing clothes today?
Have you ever taken his shoes off and put them back on 6 or 7 times, till they feel just right?
Have you ever let him wear those shoes to bed, night after night?
Have you ever wondered why he tiptoed all day long and could never sit still?
Have you ever let him wear a sock hat all day and to bed because the pressure makes him feel a little better and covering his ears muffles a fraction of the night time noise?
Have you ever wondered why out of all the toys he has to play with, he stares at the wheels of the car he rolls back and forth?
Have you ever wondered why he doesn’t play?
Have you ever had to draw the Wal-Mart star or spark twenty or more times a day?
Have you ever had to ask the manager at Wal-Mart for a sign, so you wouldn’t have to draw it all day?
Have you ever saw the joy on your child’s face to have that sign?
Have you ever had to ask the manager at a restaurant if you could let him sneak a quick look at the kitchen before he’d sit down to eat?
Have you ever had to get up and leave a restaurant as soon as your food hits the table?
Have you been in the checkout line, with a cart full of groceries, when a major meltdown hits?
Have you ever watched people stare at you and your child like you both have the plague?
Have you then had to hold your head high and bite your lip for the sake of your child?
Have you ever had to convince your pediatrician that something’s just not right?
Have you ever had to sit through hours of intensive evaluations, scared of the unknown?
Have you ever received the diagnosis of Autism for your child?
Line up for your meds
26 Feb 2012 1 Comment
The time has come. John and I swore we wouldn’t medicate our kids this young. Just wasn’t for us. But we have tried everything… therapy, counseling, special school, groups, discipline, and just LOVE. But nothing seemed to work for his irritability and tantrums. So the Developmental Pediatric Nurse Practitioner did a questionnaire with us and Brian’s teacher. So the results are in…..Brian is so high on the irritability scale that they want to put him on Risperidal. It is a commonly used mood stabilizer for kids on the Autism Spectrum. He started his meds 1 week ago and WOW the change! not to say he doesn’t have irritability or tantrums at all but there is such a change!!! My favorite change is that we aren’t yelling as much in our house..and he is able to calm down slightly quicker from screaming in hopes to be able to talk to us about the issues. He is on the lowest dose they have and we know that it wont last but this is a start and I know we are doing whats best. I feel he wasn’t reaching his full potential with how much of a “loose cannon” he was. I love him so much and can’t wait to see what other changes are to come now that his mind can maybe slow down a little and he can stop to smell the roses instead of stomping on them.
-Carri
Shocking….
15 Feb 2012 Leave a Comment
Brian has a Developmental Pediatrician appointment on Friday (Feb17th). When we spoke to the Nurse Practitioner at the last appoint we discussed medications for Brian to maybe help with his behaviors. As a result we went home with questionnaires…one for us (the parents)…one for Ms. Ann (His pre-k Teacher)…and one for Ms. Benita (his Speech Therapist). The Teacher and I both filled out ours and sent them in right away but the ST is not filling hers out. She says she isn’t with him long enough to see behaviors worth mentioning to the Dev. Pedi. I disagree based on things she mentions to me (like her flat out telling me she sees aspergers in him..how can you say that but then not write that in a form..). Hoping that the teacher has seen some of the behaviors we have at home and can help.
What the questionnaires does is simple…the Dr. will map out the answers we give onto a computerized grid that will show is major behavior issues and even will tell the Dr. the best recommendation of medication for him it any is warranted.
Ms. Ann has been telling me how great Brian does in school. Well I explained to her how he acts out at home.. its not that he flaps his arms, bites anything like that.. its a very oppositional defiance thing. Think your worst teenage girl attitude and put it in a 4yo boy.. He has this AWFUL attitude and if you he doesn’t want to do what you have told him to do he just shuts down and won’t do ANYTHING…except cry/script/stmop (all at once). Well Ms. Ann then says…OH YEAH he does that alot! He is real good at talking back with a holy than thou attitude.
We never worried about him hurting others… until today. It really started yesterday but today was a trip too. Last night he was scripting and shoving me..than out of the blue he punched me a couple times in my shoulder. I was like WTF!? and smacked his shoulder then said “gee that must have hurt when i hit you Brian. I AM SORRY.” then added “would you like to say sorry for hurting mommy.” His answer was “NO I DONT” and he punched me a couple more times. obviously ge got time out for that one! Than today he was playing at the play area in the mall and found a lil 18mo boy to play with (he holds hands and makes the boy walk where BRIAN wants him to walk).. they went and sat in a tunnel and as i am watching Brian just randomly starts smacking/hitting this lil defenseless 18mo BABY… WTF!!!!! I apologized like no other to the mother and for the FIRST time I told another parent that Brian is autistic and may have gotten to excited and didnt think. She seemed ok with it and said “dont worry about it”.. but then when the lady’s mom came in she was telling her and was very rude about it to her mom and they both just stared at me and Brian… so we left.. =(
my mind is now racing after having to re-cap this event so I will let you just think about all that. I will post later after we find out about meds on Friday!
-Carri
Band-Aids are like Duct Tape
11 Feb 2012 Leave a Comment
Well if you are reading this you were VERY intrigued by my title! hehe
Band-Aids are like Duct tape? YES you and I think Duct Tape..YES IT FIXES EVERYTHING..tear in a tube?..duct tape it..broken heal?..duct tape it…need a prom dress? make it out of duct tape!
Well in my son’s eyes Band-Aids FIX EVERY PAIN! He bumped his head… no blood but he asks for a band-aid. I tell him “no hun you dont need a band-aid”.. he then screams for 1/2 hour… finally “OMG yes you can have a frickin’ band-aid!!!!” so we get a band-aid and I place it behind his ear (so as to NOT stick to hair) 5 seconds later..no screaming. His ear hurt and he didn’t know why. He screamed and screamed. he started telling us his ears were BLEEDING..took him to the Dr. to find out he had a bad ear infection. Mind you he screamed the WHOLE way through the appointment. Then he tells the Dr. “I need a band-aid” He insisted they needed to go on his ears. With in minutes he stopped his 1 hour long screaming fit. And another example: After decided he wanted to wear mommy’s body spray he sprays it into his face and eyes.obvious screaming starts. We wash his eyes out but he insists his eyes are now BLEEDING.. so on go the band-aid over his eye like a pirate eye patch. and the screaming stops.
So we have learned that just like Duct Tape Band-Aids are a requirement in our home.. not for the normal…typical reason (bleeding)..but for the creative.. problem solving reasons.
Band-Aids ARE like duct tape…
Fun, creative, useful, and regains sanity to our 4yo Autistic son AND us.
Now you may think thats the end of my story…BUT NO…is it ever? LMAO
Brian is definitely one smart cookie. To relate the pain to bleeding. I mean he’s right..If you bleed it usually HURTS and if you put a band-aid on a cut it fixes it. SO yes we put the band-aid on.. but after that there is NO taking the band-aid off! cause if you take it off he swears the pain and “bleeding” will come back.
Wow Time is Flying!
26 Jan 2012 Leave a Comment
WOW my lil boy is now 4 years old! I can’t believe it…boy does time fly! Here is a little bit about his party than I will give an update. So I decided to try a birthday party for Brian with classmates invited. We invited 2 kids on the Autism Spectrum and 2 kids that are “typical”…as well as some of my friends that have LITTLE ones (so Elizabeth might have friends to play with). Well 1 kid from class, Davis, and one little one, Hailey, came. As soon as Davis got to our house the 2 boys went off to jump on the bed..it was too freaking cute! They were jumping like crazy and singing “10 little monkeys jumping on the bed”. Hailey and Elizabeth played a little but Elizabeth seemed more interested in playing with the boys. After an hour of jumping and giggling the kids decorated cupcakes and then we did presents…Brian loved opening his gifts. Then of course back to jumping on the bed. The boys put on a “RAVE fashion Show”(glow sticks and jumping on the bed in the dark lol). As Davis was leaving he told his mom he wanted to come back and play! that made me feel really good.. and happy to know Brian may have his first friend!!!! besides his obvious speech issues Brian did pretty well socially with One-On-One.
UPdates:
Brian: well there is good and bad things going on since school started. His out bursts are getting to a point that Hubby and I are at our whits end… he is soo oppositional and irritable! The developmental pediatrician is looking into medications for Brian. He has been getting into movies more.. We have been introducing him to Disney Pixar movies. While he loves them a lot he also watches them OVER AND OVER..and with his echolalia he memorizes them lol. I am glad he is learning to hold his attention on things longer though! He had his pulmonary appt and we are waiting on chest x-ray to determine when he will need an updated bronchoscopy. He has perfect eye sight and hearing!
Elizabeth: OMG she is growing like a weed! she loves her brother so much and is soo excited when he comes home from school. She has such good language now and they have taken her off the language delay risk. Elizabeth is still a lil petite thing but she eats like crazy!! my lil super model!
I just love watching my kids grow and learn. Hoping to post updates more often. finding the time is becoming so hard with 2 kids running around like crazy.
-Carri
My Heroes
28 Sep 2011 Leave a Comment
How does God choose which babies live and which will not? I see these babies that are born sleeping.. they are 8months and big enough that they could have lived! what makes them different to not get to see their mommy and daddy? the pain that mommy and daddy go through of a FULL pregnancy and then losing their precious one.. Or the babies that are born MASSIVELY premature that are born alive and live for a lil while but never get to see their crib…nursery…big brother/sister.. and then fall asleep never to awake again.. is that fair? is that nice? I think that is even more painful! Holding your baby… feeding them.. (if they are even allowed).. then God taking them away.
It makes me cry so much.. I am very grateful to get to keep my preemie girl and borderline term boy. and I think of all those mommies and daddies that are wondering if theirs will come home with them. The ones that bring home a baby that only live on this earth for a couple days, week, months. They are the strong ones in this world… I look at them as being stronger then any other person in the world. They protected their angel during pregnancy.. fought to keep them safe and when the time came to bring their baby into the world.. they knew they had done what they needed to do..and brought into the world their precious child. not knowing the outcome sometimes..and sometimes knowing their baby would be eternally sleeping. I have never experienced this pain.. but I know people that have. They are my heroes… they are the one’s I wish I could be as strong as!
I don’t know who all of my friends have gone through this since I know many people dont want to talk about it cause it may be too painful. And I respect that. I know of 2 people though that I want to say.. I love you! you are amazing and stronger than you even think.
A Start of Something New
07 Sep 2011 2 Comments
So Brian has started Preschool now. He is 3.5yo so he is one of the youngest in his class.. but its good for him to be there. The class is made up of 6 kids with “needs” (IEP’s) and 6 “typical” kids. He has been going for about a week now.. and WOW has there been a change in him. Of course his echolalia goes wild with all the new language he is gaining. But his language is really improving. He doesnt play much with the other kids.. but then again most of them just play alone anyway, it seems. Brian has memorized 1/2 the names of the kids in his class (cant put name with face yet though) and has learned (memorized) 2 stories!
My concern however…is that he is not eating his lunch at school… He eats breakfast at school but come lunchtime he is refusing to eat. I thought it was an issue with cafeteria food so I packed him a lunch (banana, small PB&J, goldfish, and fruit snacks)..he is only eating the fruit snacks and sandwich. This is not usual for him.
I am so proud to get to pick him up from school and see his smiling face as he tells his teacher “Thanks for comin’..I really appreciate it!”
-Carri
Been a while…
06 Jul 2011 Leave a Comment
Omg it’s been a while since I blogged last. I have no Internet so I am trying to use the iPhone app.
Brian has been going to speech and occupation therapy and making improvements slowly. He is working so hard and we are so proud of him! We have him on the wait list for a great special ed preschool for the summer and in the meantime he has a tutor for 2 hours a day for 4 days a week. Things have been so stressful for me. John and I were looking through his old pics on his computer and saw a bunch of pics of Brian as a baby. He was the cutest baby ever and I so miss his cleft. I mean I am glad it was repaired but he was cute with it too.
Brian has started to watch bob the builder now in addition to his wiggles obsession. He has memorized 2-3 of the bob the builder episodes already and he started watching them 3days ago. He amazes us with his skills!
Ok I will update soon but got to go for now! Love you all and thanks for listening/reading!!
-Carri
Diagnosis finally!
07 Jun 2011 1 Comment
Brian had his IEP write up meeting and he was educationally diagnosed with Autism. The schools will be offering him 180 minutes of Occupational Therapy and 60 minutes of Speech Therapy. These will benefit him sooooo much! We went in for Brian’s Developmental Evaluation and Psych Evaluation last week. 1 hour talking to me… 1 hour talking to Brian..and 1/2 hour going over the results. In short… Brian was diagnosed with PDD-NOS
PDD-NOS: a pervasive developmental disorder (PDD)/autism spectrum disorder (ASD). PDD-NOS is one of five forms of Autism Spectrum Disorders. PDD-NOS is often referred to as atypical autism
http://www.psychiatry.emory.edu/PROGRAMS/autism/pdd.html
I am still at a loss for words but when things happen I will update. Sry for not much info.
-Carri
Typical moms Vs. SN moms (just a lil light humor)
01 May 2011 Leave a Comment
I found this list at http://www.oneplaceforspecialneeds.com/main/library_regular_vs_special.html
It seemed to lighten my day a lil. Hope you enjoy.
Regular moms tell their kids to wake up and get dressed in the morning. And they do it.
Special needs moms put on battle gear to get our kids ready to start their day.
Regular moms ask their kids if they brushed their teeth.
Special needs moms prompt, “Brush your top teeth. Brush your bottom teeth. Did you get the sides? Open your mouth. My God, give me that toothbrush! You’ve left half your meal in there!”
Regular moms wave goodbye as their kids run off to catch the school bus.
Special needs moms get awesome door-to-door bus service for their child.
Regular moms know the names of all their friends.
Special needs moms know most of their friends by their username.
Regular moms judge other moms when kids have tantrums in stores.
Special needs moms say to themselves, “Hmm, I wonder which disability he has?”
Regular moms complain about driving their kids to sports and recreation classes.
Special needs mom grin and bear the weekly trips to tutors, doctors and therapists.
Regular moms’ kids have a teacher.
Special needs moms’ kids have a team.
Regular moms talk about accomplishments.
Special needs moms talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.
Regular moms relax with their kids during the summer.
Special needs moms start their second job as home teachers, therapists and skills coaches.
Regular moms think accommodations refer to hotels.
Special needs moms have memorized the top 20 accommodations for their child.
Regular moms hope their child finds a good career.
Special needs moms are hopeful someone gives our child the chance to work.
Regular moms soak in the tub when they want to unwind.
Special needs moms consider a bathroom break a luxury.
Regular moms enjoy reading the latest best selling book.
Special needs moms should receive an honorary degree for all the disability books they’ve read.
Regular moms go out for dinner and a movie with their husbands every month.
Special needs moms have a date night with their husbands every…wait, what decade is this?
Regular moms complain their kids won’t eat their vegetables.
Special needs moms are so desperate we consider chicken nuggets to be a legitimate meat product and throw in ketchup as a vegetable.
Regular moms’ kids go to play groups.
Special needs moms’ kids go to therapy groups.
Regular moms meet for a ladies night out.
Special needs moms get together at support groups and forums.
Regular moms have medical claim forms that fit in one file folder.
Special needs moms will tell you a small forest was cut down so we could receive our claims.
Regular moms think OT means overtime.
Special needs moms know more acronyms than a NASA engineer.
Regular moms have time to cook a full dinner every evening.
Special needs moms will never admit how many times we’ve picked up fast food.
Regular moms complain their husbands sit on the couch and watch TV while they do all the work.
Special needs moms…well how about that? Some things do stay the same!
(Just kidding dads, we know you do your part!)
Got more? Let’s hear them! Send your “regular moms versus special needs moms” to info@oneplaceforspecialneeds.com
Many special needs parents chimed in with their own creative writing! Read these here as well as a note to the few regular moms who are darn tootin’ mad about this list.
