Hello -new here

Hello, I am new here and glad to be able to join you. I am a retired nurse and adoptive mom to currently two girls with CP and in the process of adopting another little girl with CP . My oldest is 21 and the current youngest is 9. Our new sister is also 9 but her birthday is June 15 and the Elf has her birthday in October. My oldest (the Princess) is 21 Has CP due to a mitochondrial disorder and mild lissencephaly. All the girls have epilepsy. Two are fed via J tubes and Sis is g tube fed and will be home in June or July. I have a blog if you'd like to learn more about us and follow along in this adventure in life. entertainingangelsunaware.blogspot.com

Thank you for allowing me to be here.

F.Y.I.

Hi girls,

I just wanted to let you all know about a new website I found out about.  It is called kelly's kidz.  Kelly is the mother of a little girl with CP.  She has set up the site as a way for families to pass on their used medical equipment to another child who may need it.  You can also sign up to receive something you need.  It is brand new, so I'm not sure if you have to pay shipping or anything, and I'm not exactly sure where in the US it is based.  But it is designed to provide a more affordable way for us to get our children the equipment they need.  It's worth checking out.  I've posted a link to it in our side bar as well.  

Also, I received an e-mail from a mom who has a 24 year old son with severe cerebral palsy.  Her name is Annette Monts Falls.  She asked me to post her information for you all.  She has a blog at www.Annette4clay.blogspot.com , or you can e-mail her at Annette4clay@aol.com.  For anyone on facebook, she has started a group there called "Families fighting for caregivers" which I understand to be an attempt at getting better systems for caregivers and respite for special needs families who need more help from those services.  Take a minute to check her out and tell her the tulips sent you.  :) 

Tired...oh so dern tired

I am so tired. I keep asking myself how much more I have left in me. Four hours of sleep a night isn't enough for me to function on. I walk around crying all the time. "Normal" parents do not get it. One friend says, let the house cleaning go. Can't do that or the three year old would have gosh knows what in her mouth. Same person, get "P" a personal aide. What the heck have I been fights the Children with Special Needs people for?

And I have to admit I am more emotional tired than phyiscally. Yesterday "P"s neuro finally called back. Seems after his 48 hour EEG/EKG with video monitoring we have more answers. My husband and myself really thought we were dealing with seizures. No they couldn't monitor them but if they are temporal lobe seizures they can be very hard to detect. We had braced ourselves to handle that. It seems we must have looked like the scene in Forrest Gump where he runs and his braces come flying off. No amount of bracing could have prepared us.

Before I say what the doctor said let me preface by saying I have always told the doctors not to beat around the bush. Tell me straight out what is wrong that way I know exactly what I have to deal with. That being said...direct quote " P's brain is slowly killing him." I am not sure I have exhaled yet. It seems there is more damage to his brain stem. Neuro explained it as P's brainstem is telling his little body, okay we don't need anymore oxygen. So breathing stops for at the most 30 to 60 seconds. This is why he starts shaking and his hands, feet, legs turn purple. All the oxygen goes to the heart. Also this is why he has started choking on everything. His brainstem says, enough and the body listens. Through my tears I asked the doctor, what do we do now? He says..we do nothing. That is the hardest part for me. I am the one with him 24/7 and now I get to watch him die? And not know when? Oh and meanwhile..still take care of his little sister, my two daughter, my husband, keep the house up and going, meals...Can I do this? I know I have too but it doesn't make the doubt go away. Nor the resentment. Not at my son but at his bio parents that are still out there using the same drug that caused all this for him.

Sigh....

What Is Up With Our System???

Okay, having gone through the special education system here in my county with four children now I am FED UP! It started with our five year old when she was 2. Interestingly enough is in kindergarten not on an IEP despite the fact that her social skills are at a two plus year level. She seeks out adult approval, has trouble making new friends, cries and hides under the table whenever I go in to volunteer and does not want to go to recess, ever! Luckily she had a mommy who is very persistent and found her help in other places when the school system failed her before...but now I have three other children with similar issues.  And I feel like I have to fight to the death to get any help or services.

We had my eight month old evaluated today by Early Intervention and he tested out at cognitive 6 months, Language 4 months, receptive skills 4 months, social emotional 6 months and he still does not qualify for services. WHAT!? Can someone please explain this to me.

They are calling him "mildly" delayed and really did not have many suggestions for me on helping him respond to his own name and his reflection in a mirror. He currently makes no consonant sounds or babbling words and he looks physically like a five month old. The only suggestion they had was that maybe he was sleep deprived and we should give him melatonin like we do the rest of our children. Nice Nice ladies but help!!!! Does anyone have any ideas?

I hope my daughter's pre-school eval this next month goes a little better seeing as how all she wants to do ALL DAY LONG is jump off of our couch or her top bunk...over and over and over. And half the time I find her without any clothes on.  Does anyone else's children not understand why they have to wipe?  or why it is important to wear shoes or a coat in snow?

Why is my heart still breaking every time my four year old son screeches like a dinosaur, covers his ears at music, hits his head with his hands, rubs his head across the carpet with both of his sisters. I thought I would grow in accepting things as they are. Will he go to school next year without any extra help? 

I am asking myself again today after meeting with "experts", how many other children are falling through the cracks because of budget crunches in the system?  How many others are missing help early on and getting worse because they aren't bad enough off? And why in the heck did they repeal the law that allowed tax credits for disabled children?  How much more do they want us to pay out of pocket? ARRRRHHHG.

A vent... By me

I love my son. He is my off spring and there are so many times I can't imagine life without him. BUT.... Today is NOT one of them. I am so irritated by his non verbal grunting. He KNOWS what he wants and I guess by some miraculous means he thinks that grunting and temper tantrum throwing , oh and not to mention that arm pinching thing he does is gonna help him get it. (luckily the head banging thing has not been happening)

SERIOUSLY Its not. I try to be patient. I try to be loving and caring but all I can think about is my bed and headphones.

This morning my incredibly pleasant spawn woke up at 4 am.. Thanks right 4 am. Do you know what is up at 4 am. NOTHING. I tried the whole sleep with mommy thing. Look Tyler the sun is still asleep direction and NOTHING. He kept signing all done.

Put in a movie. Go potty, get a carnation for him and put up the gate to the bathroom. Try sleeping for a few more minutes and nothing.

Finally, had DH sleep/watch him ( he can sleep though a lot) and I head to another room. Only to be awoke at 7 so that Ty wasn't "alone" for to long. I go in to put on Jammie pants and find the toilet OVERFLOWING with Toilet paper. He had knocked over the gate and put and ENTIRE ROLL in the toilet. Taken everything off the bookcase ( a daily occurrence) and pulled EVERYTHING off the dresser.

He ate a good big bites of food for breakfast. And then decided hew as all done and to throw a fit when I tried to change him. Then to scream and throw a fit as I went about the morning doing laundry and picking up.

I got ready for Sunday ( my mom wasn't kidding when she said hell broke lose on Sunday Morning) only to have him throw yet 2 more temper tantrums about the movies HE chose to watch.

He finally fell asleep on the floor and I ran some errands ( missing church of course because who wants to go when they just survived a handful of tantrums) only to have him wake up and whine, whine, whine even when I am sitting on the floor playing with him.

Oh and he threw all 56 letters in his magnet alphabet set, spit out his drink on the floor, threw his balls out of his ball pit and all the while managed to make a mess in the kitchen.

Did I mention if he wasn't cute I would be HURTING something right now?


Oh and if anyone asks if I would change anything, I don't think I can honestly answer I would. I would change him. I would make things easier for him. I would make him "normal."

I am a bad mom

Feeding Breakthrough!

Marshall has been in feeding therapy for I don't really know how long. He worked with his OT for at LEAST a year before she gave up and sent us to the Speech Language Pathologist. The OT helped him work on the sensory part of his feeding aversions and the SLP worked on the behavioral. What an amazing difference yesterday was. Not only did he eat Cream of Wheat for breakfast (which he always said he hates), he ate Spaghetti and Meatballs for lunch (Chef Boyardee)!!!! This is shocking! I can't tell you how long we've been frustrated with his terrible eating habits. We also took him off Pediasure and he now drinks whole milk, which he hated before and refused to drink.

So, how did the therapists do it? Like I said, it took well over a year with the OT working once a week with him. She said there are steps to eating.

Step 1 - The child is able to TOLERATE THE PHYSICAL PRESENCE/SIGHT of the food (i.e. will be in the same room as the food or at the same table as the food.)

Step 2- The child is able to INTERACT WITH THE FOOD (i.e. Uses a napkin or other food to touch the target food)

Step3- The child is able to TOLERATE THE SMELL OR ODOR of the food

Step4- The child is able to TOUCH THE FOOD TO HIS/HER SKIN (i.e. Tolerates the food touching a body part, including fingers, hands, face- the closer the physical proximity to the mouth, the more threatening)

Step5- The child is able to TASTE THE FOOD (i.e. Any action wich results in the child getting a taste of the food)

*These steps are progressive, such that the child will usually master step 1 before he/she masters step 2, etc. Each of the five major steps is composed of several sub-steps, which will vary from child to child. (I have another handout on that. I will scan it in)

So, that's what my OT did with Marshall. When the SLP got him, his feeding problems were behavioral. She also thought he had Reflux, which I agreed with because he would always tell me he threw up (multiple times a day). When we went to behavior feeding therapy, she started with a dry spoon and told him "open" and he was supposed to open big. He didn't mind the dry spoon that much but then she dipped it in some applesauce and said "open" and he did not want to open. She asked him, "Who is in charge of food? Is food in charge of us? No, food is food! Marshall is in charge of food." She tells him that every time. He's also not allowed to say "Yuck" or "I don't like that". He has to say "I'll try". She explained that everybody likes different things and it's OK if you don't like some food. You can just try it. Every time she dipped the spoon and put it in his mouth, he got to play with a toy for 20 seconds. She used Mr. Potato Heads the first time. Each time he took a bite, he got another piece of Potato Head. She IMMEDIATELY brings the toy out after she gets a bite in his mouth. That distracted him enough to forget he didn't think he liked applesauce. If he clamped his mouth shut and refused to try the food offered, she turned her back on him and ignored him for 2 minutes. As soon as she turned her back, he immediately said, "Ok, Ok. I'll try," but he still got ignored for the rest of 2 minutes. That worked wonders. I just did it yesterday.

There is so much more to tell but I've got to get going. I'll scan in all the papers my OT has given me and post them here. If I can find the SLP's paper on feeding therapy, I'll scan that too. My computer room is quite a mess right now because I just got a new-to-me desk.

HE ATE CREAM OF WHEAT!!!!

We had a major breakthrough with feeding therapy. Marshall ate Cream of Wheat this morning without complaining!!!! One of the problems with his feeding is that he is SOOO delayed in fine motor that he gets frustrated while trying to get the food to his mouth. I KNEW he was delayed in fine motor but it seems like I'm the only one who sees it. Ugh....

I will write more about feeding therapy later. I've got a million things to do while Marshall is at school.

Clay's Law

Please help us help our kids with autism by going to www.autismvotes.org , reading about Clay's Law (law to require insurance companies to cover autism related therapies and services), and sending a quick email to your state senator. The email literally took less than 5 minutes, and it could help so many families.

Thanks so much!

Vestibular anyone????

Today is Thursday so that means OT for at least an hour. While the OT had Jonah on the ground he started to bang his forehead repetitively on the hard wood floor. I have seen him shake his head back and forth very fast as if saying no. I have seen him hit the back of his head on the high chair in the middle of feeds, but hitting his forehead is new. I'm so glad the OT was here to see it. She said something about vestibular. I have read a little about it but it is still kind of confusing. I bought a medicine ball to bounce him on but he is still doing it. I don't know what to do. I know he needs stimulation but what do I do with a 15 month old who can only sit or lay on his tummy?

Songs of Love

In September my family and I were introduced to a non profit called songs of Love. It is a company that volunteers their time and talents to create music for children who are ill or who have chronic problems. You fill out some info about your child and they will have someone create a song. It is amazing. I listen to Jonah's song all the time. It is very beautiful and brings comfort to me on days that I'm just feeling like I can't do it any more. The songs are original. follow the link and check it out. It is something that I thought everyone would enjoy. I know my family has.


www.songsoflove.org

About Us

My name is Mel. I am the mother to 3 boys ages 11, 9, and almost 5. My youngest, Crew, has Cerebral Palsy and severe hearing loss.

Our story begins February 2004. My husband and I eagerly awaited the arrival of our 3rd child. At 39 weeks gestation I awoke sometime after 4 AM with what I thought were labor pains. I was so excited that our baby was almost here. I got up and puttered around the house, played some solitaire on the computer and waited. Well, I didn’t have to wait long until the pain became so intense that I had shortness of breath. My stomach was hard like a giant contraction and I felt very lightheaded. I woke up my husband and told him to grab the overnight bag. As he was getting ready I headed out to the car. I was so weak that I ended up crawling out to the car. My husband jumped in and as we backed out of the driveway we immediately noticed we would be traveling through a blizzard.

The roads were deep with snow and it was falling quickly. Apparently, we beat the snowplows that early February morning. The interstate hadn’t been plowed at all and I remember clinging to the door handle thinking that if we slid off the road I was going to die. My stomach was still hard and I mentioned to my husband that I couldn’t time the contractions because I couldn’t tell when they stopped and when they started.

The 25 minute drive to the hospital took over 45 minutes. We promptly checked into L&D (I had to use a wheelchair) and I asked to be checked immediately. Because of the pain, I expected the nurse to find that I was dilated to an 8 or more. Unfortunately, she found that I was only dilated to a 3! She checked for the baby’s heartbeat and I immediately knew something was wrong. It took the nurse some time to find a heartbeat and when she did it was very faint and SLOW.

Within seconds my room was filled with various medical personnel and they were wheeling me into the OR. I entered the OR at 6:06 and Crew was delivered via C-section at 6:11 am. The long anticipated moment when the doctor would exclaim, “It’s a BOY, or It’s a GIRL” never came.

My baby was whisked away before I ever caught a glimpse of him. I was paralyzed with fear not knowing if my baby had made it and didn’t ask because I didn’t want to know. As the doctor was sewing me up, a nurse asked if I knew what gender my child was. I told her that we wanted it to be a surprise. She said, “You have a very beautiful baby BOY but he is very sick”.

Medical staff worked for 25 minutes to stabilize Crew. He spent the first 3 weeks in the NICU. I held him for the first time when he was 6 days old. His NICU nickname was “The MOOSE” because that’s what he looked like next to the preemies. One doctor after another commented that at first they wondered what he was doing there until they read his chart. Medically there isn’t an explanation for his survival. A complete placental abruption is to blame for his extended period without oxygen.

Five years later I can finally tell his story without trembling. We have gone through all the stages of grief. Also, I have experienced the love of our Savior like never before. Crew is a wonderful gift and I love him just the way he is. Yes, he does struggle to ambulate and communicate but I’ve seen how his spirit touches people like no-one else can.

Today, Crew uses a walker for short distances. At a recent IEP it was reported that his word bank has hit 60 words (75% ASL). The sign language is just now taking off so I look forward to an increase in communication over the next little while.

I look forward to getting to know all of you and learning from you.

Any suggestions

I am looking for some help. It has nothing to do with medical help, just emotional help is the best way to desribe it. As I have already said, our oldest son has autism. So having things different for us is nothing new. For those of you who have kids on the spectrum, I know you understand the need for set routines, ect. And you life basically revolves around it. Our son's bedtime is 8:30pm. In order to get him to bed and to sleep on time, we need to start the nightly routine at 6:45-7ish every night. If we are out at family functions (since that is basically all we do as a family), we know it will take 2 hours at night for him to calm down and do his thing in order to go to bed. It's not hard on weekday nights to be home and into the swing of things at 6:45. The one thing that has come up is that our church just moved to 9am. We used to have 1pm so if Trevor got to bed late, it was fine. Now it is no longer OK. So we have to be home by 7 at the latest now to get him to bed on time. Saturday nights used to be the one night a week we had to stay out later, have big family dinner's, ect. My extended family loves to do game nights and did one again last night. Since it didn't even start until 6:30, we couldn't make it. Now this isn't a new thing, we have missed so many I can't even begin to count, family get-togethers since it didn't work into our schedule. But for some reason I am really having a hard time with it.

So I am wondering if you have had this problem as well, and if you have any suggestions on how to not get upset? It seems like we miss so many things these days with having two kids that are special needs. It's not my family's fault, not our fault, but it still happens. I think it is hard to not feel left out of the 'regular' things that go on. There is no easy solution, and I know it has to come with my attitude. So if any of you have had simliar situations, what have you done to get through it?

PS. Katie, I am interested in the Melatonin. Can you bring it to playgroup on tuesday?

A special thank you

We took a trip to Utah this week and I was reading over some of the posts. THANK YOU. I needed to hear them. I didn't get a chance to comment but wanted to give you all a HUGE Hug! What a club we belong to. I am lucky to have found you all

Say A Prayer

for us. Sorry I haven't been much of a contributor lately. My children have had quite the month and are headed back to Primary Children's on Tuesday for the third time in a week. Thanks for being so supportive of each other on here! It's a great site.

As If He Wasn't Angry Enough..

I had to go and get in a car accident. It was NOT my fault but he is upset. He's Ok now but he was totally crying and wanted his Daddy. Luckily, Brian was really close when it happened. I was just waiting to turn left. The light turned yellow, the car in front of me turned left, I looked and saw it was safe and then started turning left. The next thing I know, I'm hearing a screeching noise and a huge CRASH!!!!!! I was totally freaked out and crying too. The police man said everything looks like it's the other guy's fault. There were witnesses (plenty of them) so I'm very relieved. I'm very sore and in quite a bit of pain but I didn't go to the hospital because I didn't think I needed an ambulance ride there. The paramedics said I'd proably have whiplash and pain from the seatbelt but other than that, I'd probably be OK.

I'm VERY blessed. I was watched over and kept safe today. We prayed for that in our family prayer this morning. I'm so grateful we made sure to have scripture study and prayer this morning.

What To Do?

I would really like some feed back on the following question. How much is too much? I feel I am approaching that point if not passed it. I have some very torn feelings right now, actually I am more than torn, I am pretty upset. I feel like I am leaving my “healthy” kids behind to get Bree caught-up. With her therapy once a week and the play group she is going to be starting. She and I work heavily on Signing Time and Your Baby Can Read. Nights are rushed to get everyone in bed so that Bree gets her quite massage time to help increase muscle tone and keep her loose to prevent cramping.
I just realized the other day that Jer is showing no signs of being interested in writing his name or learning numbers past 12. He does not recognize letters, not even the ones in his name. Emma seems to be at a stand-still also. She would rather watch movies than sit down with some flash cards (that is new within the last few months).
Including them with what I am doing with Bree is great, but only works to a certain point.
So, how much is too much? Do I take a step back with Bree? I am unsettled about this. And have no answers What would you do?

Can anyone relate?

I've spent the morning laying in my bed in fetal position, crying.  On Monday, a short yellow bus pulled in front of our house and took my baby away to the Deaf School.  I tried to follow,  but I had to drop off A at school too.  I have always waited and watched him until his teacher let him inside.  But my heart ripped in two as I wanted to be there with MK for her first day in a new place, riding a bus in her wheelchair.... I gave A lots of hugs and he told me he'd be fine, so I let him go play on the playground and drove away without watching.  The whole way to the deaf school (20+ minute drive compared to 3 minutes to our neighborhood school) I kept watching for school buses wondering "Is that her bus?"  no, it's too long. "Is my baby in there?" no, there isn't a smiley face on the front, no, it's not white on top.  It is a desperate, sickening feeling to feel like one of my children was taken from me and the other had been abandoned.  I know it sounds dramatic.  Am I pathetic and overprotective, or am I just tenderhearted?  I know Mothers worry.  It's our job.  But I seem to be really good at it.  too good I think.  

I've spent the last two days at school with her - admittedly to make myself feel better- she doesn't need me there.  She adjusts just fine.  Today, I decided I would let her go all by herself.  It is a short day.  It can't be that bad right?  There are so many things I need to be doing.  I don't think my house has been properly cleaned since OCTOBER, I've got bills to pay, deadlines to meet, obligations to fulfill, etc. etc. etc. But all I can do is worry about my kids today.  (A was tearful this morning about nobody playing with him at recess)  

When people tell you that parenting is hard, they don't explain it.  They don't tell you that your heart literally aches, and that ulcers develop overnight.  My husband is fine with all this.  These things don't phase him.  He says these things will help to strengthen their character, and build their independence.  And of course my head tells me he's right, but when will my heart catch up?  Why are these things so hard for me?  

I guess I just need to whine to someone.  I feel so pathetic and wimpy today, and I have to giggle a little, because I can't help but think of all the times 'regular' Moms have told me how strong I must be (just because I'm a special needs mom.  Not because of anything in particular) and I have to think, If only they could see me now...... glad they can't.  There's still something comforting in a small vote of confidence no matter how unfounded I feel it is.  :) thanks for listening to me girls.  I needed that. 

Sleeping help

I read through the post Anita Nap did on her little one and sleeping problems. I made a comment on her post about having some problems with that as well. Thank you Anita Nap for the info about sleep apnea... I made an appt today with his ped to see what we can do.

I was wondering though, since so many of you have tried Melatonin, how do you buy it? I also am wondering at what age did the kids start using it and how can you buy it? Like is it a pill, chewable, liquid ect. We have used benadryl on several occasions as of late since some nights I am so deperate for sleep. But we also use it for mild hives related to all his food allergies (I only want to use his Epi-pen for emergencies), so I really would rather not use it for sleeping. Since I know Melatonin is a more natural way to go, I need some advice.

Also, if anyone has any other ideas on things to try, let me know.

I guess I also should explain our probs for those of you who may not have read the comments on Anita Nap's post.

Josh used to sleep pretty well at night. He woke up once or so, but not for long and usually he would whine a little and go back to sleep. About 3 months ago, he started waking up more and was wide awake. He will play in his crib and not scream for the most part which is good, he is just is awake and doesn't seem sleepy. I have had to get him out of the room at times since we wakes up my 4 yr old and that isn't really fair for him to have to be woken up. When I do get up with him, he doesnt' want to rock or anything he wants down and to play. He runs around, squealing and giggling (which is not a normal behavior for him). It has gotten so bad the last month or so.. he wakes up every 1-2 hours and takes only 45 min to an hour naps during the day. It is sooo frustrating. So that is why I am looking for help. Our 6 year old with autism went through a stage similiar to this that lasted for a few months, but he was 4 1/2 when it happened. He was much easier becuase he would just lay on the couch and watch movies. Josh is so much more difficult.

So if you have any other suggestions, please feel free to share! Thanks for all the help. I am greatful every day that I have found all of you!

Signing Time- LOVE 'em BUT Don't Need 'Em

So, I have a bunch of Signing Time DVDs, including Baby Signing Time. I love them. I never wanted to give them up but several of you have expressed the need for the DVDs so I've decided to share. I would be willing to give them to anyone on this Tulips blog but maybe you guys who need them could share them all and maybe even swap once in a while so you don't get sick of just one DVD. I'll let you know which ones I have.

Also, if any of you want to borrow the book Raising A Sensory Smart Child, or Parenting Your Asperger Child, let me know. We can do a book exchange on here. :)

Long Shot...

So we just got JT's correct DAFO (they messed up twice) and we went to get shoes for him.  I am totally into shoes and I was really excited about getting him some new ones.  My excitement turned to despair as we tried on shoe after shoe in 5 different stores.  JT just grew out of size 5 but his DAFO makes his left foot an 8.  Both of his therapists have insisted that we only buy 1 pair of size 8 shoes, that buying two different sizes was ridiculous.  They also said to look for sturdy shoes.  Sturdy shoes are ugly.  JT has the thinnest feet known to man, size 8s just flop around on his right foot for a few minutes before they fall off. 

 So here I am crying on the floor of a Famous Footwear while JT runs up and down the aisle laughing and flopping and tripping.  After trying it their way for way too long, we went against most everything they told us.  I bought two pairs of black Converse All Stars.  One an 8 and one a 6.  I love them, JT loves them....but now we have two unused shoes.  I don't like to waste anything but I know it's a long shot.  Can anyone use a left size 6 or a right size 8?

How Am I Supposed To Feel?

Once again I am so aggreivated at the system. Today I had an in-home meeting with Children with Special Needs Services to try to set up for a Personal Care Assistant for my son. First of all, I was already upset with myself that I have to do this. To have someone come in my home and help take care of him is rather defeating for me.

Was the worker helpful and informative? Yes, I now know who to contact to try to get the special car seat we need and diapers paid for. That was a big one. But the questions she had to ask..ugh. When you have to list what you do for your child and what you assist him with, I never realized how much it was. I learned there is really nothing he does on his own. And that there is never a time in 24 hours that he is out of my eyesight. Okay I can accept this.

Did the questions make me gasp? YES. Especially when she asked and I quote.."When you realized all of this was wrong with him why did you not turn his care back to DFPS?" I picked my jaw up off the floor, looked her straight in her eyes and asked if she felt children were a returnable commodity. No answer there. Then she asked why we don't commit him and all I could think (forgive me if I offend) was..If this b**** doesn't leave soon I don't know how much more I can take.

Just for once can't people stop and think? Do they not realize my heart breaks because we know we will never see our son grow up into a man? That it kills me to realize we can't adopt him because then we would lose his benefits and I can't afford to take care of him properly without those? Does she stop and think what it feels like to see your husband cry for his son when he is raging out of control, red and can't breathe properly? We would give our lives for any of our children. To sit in an office with his doctors and psych care and be told that he will either die from complications of his brain damage or his own hand? Because they don't know what to do?

And then to turn around and pray our seventeen year old biological daughter does not have a malignant brain tumor. Can't someone please realize how we feel at just the thought of having to bury two of our children??

Sorry, lack of sleep is wiping me out. I am emotionally drained but yet people keep pulling the plug and the tears run as they do now.

I'm Mad Today

Maybe it's a normal thing. I don't know. I don't want to be angry with Marshall. It's not his fault he can't sleep through the night. I'm just SO BURNED OUT!! He has bad dreams constantly EVERY SINGLE NIGHT! When will it stop? What will help? There is no end in sight. I've always had a goal to go by. Something to keep me going. When he was first home from the NICU, I told myself, "I can make it to 6 months". The doctor thought his constant fussiness and lack of sleep was due to colic. It didn't improve at 6 months. I figured I'd wait for 6 months ADJUSTED age. Yeah, that came and went with no change. We're at four years now. Well, four years and nearly 3 months. I'm exhausted. I'm so SICK of bedtime woes. I'm tired of my child waking up so many times during the night. He's not always coherent but he cries, I wake up, have to check on him, then I try to go back to sleep. Sometimes I can't go back to sleep right away so I lay there a while. Then just as I finally fall back asleep, he cries again. I tell him he's safe. There's no bad guys. I checked his room. I tell him I looked under the bed (I check it all again) and there's nothing there. I check the closet, behind the doors, in the hallway and report back that everything is fine and he's safe. He has his rope lights on his bunk bed (which he LOVES). He has music playing in his room all night. He has a cricket sound machine playing all night. Yet, he still wakes up. He still wants someone in there. If I refuse to stay, he cries and cries even more and wakes up Nathan. If I ignore him, he gets even more scared. I'm burned out. When will it end? When will he sleep? I think I need to get out more often. I'm gonna go crazy.

Just Some Ramblings

I have only posted in comments, and not all of them, the last little while. It is very exciting to see how much this is growing and how fast! You are all so truly inspirational; your stories are amazing and really give me a better appreciation for my own trials, knowing I am not the only one.
First off, we have a heavy weight punching bag, I am sorry, I forgot who was asking about them and I am too lazy to go back and find out. However, it is yours if you want it. I think it is a 100lb bag, and I am not sure if it will hang okay from your ceiling. A year ago my husband developed, for no known reason, wrist drop; he no longer uses it and it is just sitting and collecting dust. Also, I have 2 pairs of Hatchbacks, size 6 (black dress) and 7 (brown casual) if you are looking for some. You can email me at lukerinhall@gmail.com or just post a comment here or on our personal blog (hallfamily-lukerin.blogspot.com).
A little update, Bree is doing well. She was doing a lot better before the Christmas break. We really messed up our schedule and routine. I think it was nice to get away from it, but her muscle tone is very tight again and she gets cramps all the time—Any one have any good ideas how to relive those kind of Charlie-horse pains? She is getting more and more adventurous and that in turn is causing more injuries. But I don’t want to stop her from learning and trying all she can. So we have taken a few more precautious, and hope for the best!
She is trying so very hard to talk, she just wants to. It is hard for me to accept that she may never be able to, only make repetitive sounds that sound like the word. It can be heartbreaking. We borrowed a program called Your Baby Can Read in an effort to help her with her words. I have only done it for a few days with her. Anyone know anything about this program? It is supposed to be really good for all children under the age of 5.

I wanted to say thank you to all those that posted and read Lori’s last post. For as many different needs we are working with that is the one that I think we all fight with. The thing that weighs so heavy on our minds. The worry of our little one not being up to par. I find myself easily upset by the thought of Bree struggling in anyway. I told my husband about that and he brought up a point that hit me as very true in a profound kinda way. He said “Yeah, I worry about that too, but I worry about that with the other kids as well” I am not sure I can think of one parent who does not worry about their child struggling in anyway. It was a nice moment, to feel like I was just a regular parent with regular worries, for all my kids.

Please let me know if you would like the shoes or the bag...

My Favorite Books

Ima Mom wanted us to share our books so here I go:

Marshall's favorites (some of which I think I got from Ima Mom)
We like to read this one when Marshall is mad-
Here is one when we talk about not hitting and what we SHOULD use our hands for:Marshall loves numbers so this is one of his favorite books. It give examples of how big a million, a billion and a trillion are by using things kids can understand. He usually picks this one.


In my house, you can't go wrong with Froggy books. Marshall has a bunch of them and he loves to read them. I think one thing that endears him to the books is how repetitive they are. Froggy flops around and goes, flop, flop, flop a lot. He is an independent kid (ok a frog) who messes up sometimes just like our kids.

Books for helping me understand my child are another story. I read part of this one but we're not actually convinced Marshall has Asperger's Syndrome. We think he's still on the spectrum though. If you have a diagnosis of Asperger's, I totally recommend this book. It helps you understand your child. Even if you have 2 children with Asperger's, they could be totally different. This goes through subtypes of Asperger's and helps you understand how to deal with the children in those areas. It is a great book and I'm willing to lend it out to anyone who wants to read it.
I can't tell you enough good things about the book Raising A Sensory Smart Child. I tried reading The Out of Sync Child but I just couldn't seem to keep reading, much less really understand what it was about. This book not only helps you understand Sensory Integration Dysfunction, it gives you great tips on how to combat the sensory problems. For example, if your child is so oversensitive that brushing teeth is a major challenge, they tell you to massage the gums first. This book is a wealth of information. I'm so glad I own it! Again, if you want to borrow this one, I'd be happy to lend it out.


Nathan has ADHD and Anxiety so for him, I read the book Helping Your Anxious Child. It helps you learn techniques to teach them how to deal with anxiety situations and solve the problems themselves. I haven't finished it yet but I'm still working on it.



We LOVE books in our family. Nathan got several books for Christmas and we've already taken turns reading them. So, I'll throw one in at the end here that is just for fun. It is Nathan's and my favorite new series...The 39 Clues. Ooh, I can't wait for book 3 to come out!!!! I feel like I should be on Reading Rainbow!!

Favorite Books

I thought it would be helpful for us all to swap our favorite books. These are some of our favorite picture books. I am interested as well what parenting and special needs books have helped us all the most.

It's Okay

One of the things my husband and I have been working hard on the last year is truly being happy for our friends with "normal" kids and not feeling bad/upset/sad that their children progress when ours stay stagnant.  We actually went to grief counseling to try and help us (which, btw, I recommend for any parent with a special needs child... or children.) The main thing that's helped us is being open and honest with our friends when we're sad about things, rather then holding our jealousy/sadness/anger in. 

Reagan had an awesome week with the walker.  She finally took a few steps without our help. Left, right, left... and then crumpled to the ground totally freaked out.  But I was so happy that she did it on her "own," it was the first time she'd done that without us holding the walker.  YAY!!  Tonight we had a friend over whose kid is about 5 weeks younger gestationally than Reagan.  We knew that eventually her little girl would pass Reagan up and has been on that path for awhile.  When they were playing in our toy room tonight her little girl eyed Regs walker and crawled over there, without even thinking I situated her on the walker and said "go get your Mommy!"  And... what happpened?  Yup.  She went straight to her Mom on the walker and then for the next few minutes cruised around the basement with no problems at all.  Sigh.  Blast. 

Luckily this friend is a close friend and I think she could see the pained expression in my eyes cause she asked straight up "does that make you sad?  I'm sorry, I didn't even think about that!" I told her I didn't think about it either... until her girl was doing it with so little effort and no exposure.  I had the opportunity to use what we talked about in grief counseling.  :)  I told my friend honestly that yes, it was hard to see her girl moving forward and progressing when my child wasn't, but that I was happy for her successes even if it made me sad.  I thought that was progress.  I wasn't even bitter... okay.. maybe a teeny bit bitter. 

Progress though.... progress....

Anger Management

Marshall has been pretty angry lately. Ok, he's always been angry but he's getting worse again. I am really not all that excited about upping his dose of Risperdal again.

So, I was thinking maybe a punching bag would be a good thing for him. We already have a hook in the ceiling that we use for his Airwarlker Swing. I was looking at punching bags for children but they are Bozo the clown blow up ones. Would that provide enough pressure for him? I mean, I do understand that he is only 4 yrs old but he was FINALLY able to express today that sometimes he gets so mad he just wants to break Spiderman (his most favorite toy). I told him when he gets mad, he can punch his pillow or his bed or when we get a trampoline for inside, he can jump until he's not mad anymore. So, does anyone have any suggestions on a punching bag? Do you make your own? Do you buy a cheapie blow up kind? What?

Thank You

Thank you all for the kind welcomes. I don't know how to reply to the comments yet but I promise to try to figure it out. If you want to know more about "P's" dx's ...please just ask. Unfortunately I am a mountain of knowledge.

Introducing my "flowers" warning long

First let me start by saying thank you. Thank you for creating a place where parents raising special needs children may come together. I honestly do not believe parents of "normal" children quite understand this journey we are on.

My name is Theresa and I am 38 years old. I have been married to my wonderful husband, Michael, for 20 years now. We laugh looking back as in our young naivety we both wanted six children and for me to be a stay at home mom. Oh boy was God listening a tad bit to much!

We have two biological daughters. "S" is 18 and blossoming into a beautiful and strong woman. She will graduate this year and holds down a full time job. On her one night off a week, she watches the babies so I can get out of the house for a few hours. Albeit they are asleep! "N" is 17 and this weekend will be enlisting into the National Guard. She lives on her own, works and attends high school and still keeping a 3.8 GPA. It has took her father and I a little while to understand her choice of life partners but hey we have to grow too!

Our lives changed when we received a phone call on Valentines Day of 2006. My husbands 15 month old godson was in the hospital after ingesting his parents stash of methamphetamines. I spent most of the night rocking him and crying. We decided then and there that "P" and his little sister "K" (two months old) would be coming to live with us. DFPS took custody of the babies the next day and on May 17 2006 they came to us. On March 7, 2007 we were granted Permanent Managing Conservatorship. Loosely means we have all rights to the children except for being able to adopt them.

"K" is now a 3 year old terror! Daddy has spoiled her rotten! So far she has been diagnosed with FAE and Developmental Delay. She also has Sensory Integration Disorder. Which all means she is usually the happiest little girl you would want. She has very limited speech ( the same as if she were 1). She also has a very high tolerance to pain, hot and cold. Example : Big brother pushes her into window sill. All I hear is a small cry so go to investigate. Blood everywhere and no two front teeth. The were pushed up into her gums. Now she will not have those teeth till the big ones grow in.

"P" has more diagnosis then letters in his name. To date we have : Periventricular Leukomalacia (PVL), Cerebral Palsy (CP), Cortical Visual Impairment (CVI), motor and vocal tics, Seizure disorder, Early onset Bipolar, Antisocial Behavior Disorder and waiting on the positive dx for schizophrenia. And what is this caused from? Yep you guessed it. Bio mom's drug use during pregnancy. What all this means is I have a very brain damaged and dysfunctional son. He currently can not go to school and we are looking into a teacher coming to the home. He no longer dresses himself or goes potty. He chokes continually and his speech is decreasing. He has to be supervised 24/7. If I go potty, he goes. If I do laundry, so does he. He has tried strangling his sister 4 times, self injures ie : black eyes, bruises, cutting himself with anything including his fingernails, bites till he bleeds, picks until he bleeds.
I guess the worst part is when every doctor he has looks at you and says they do not know what to do. That hurts because I need someone to help. I know they are with the different meds and our wonderful neuro has given me "carte blanche" when it comes to increasing dosages. I increase then call in to get script changed.

Sorry this was so long but trust me this doesn't even cover a part of our lives. I look forward to getting to know everyone here!

Some Things I Found Today

We've been talking about needing swings and trampolines. I'm sure many of you are in need of other things as well. I've had some time to myself today because my Mother-in-Law is visiting (HOORAY! I needed a break!!!) so I've done a lot of searching. I found an exchange group that you join through Yahoogroups. People might have a swing and be willing to give it to you for just the cost of shipping or something like that. I just requested to join the group. I hope it can help some of you. It's called Special Child Exchange. Click to go visit that page HERE.

Challenged America bought Marshall's Airwalker swing. They have a $500 limit but you can get some good stuff with $500! Apply for a grant HERE or email them at: submissions@challengedamerica.com

Does your child have Cerebral Palsy? Go HERE for assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. Blind, Deaf, Amputees, and children with Cerebral Palsy, Muscular Dystrophy, Spastic Quadriplegia, Encephalitis, Rheumatoid Arthritis, Spina Bifida, Down Syndrome, and other disabilities receive assistance. DCRF focuses special attention on helping children throughout the U.S. that do not have adequate health insurance, especially the physically challenged.

United Healthcare Children's Foundation helps families too but to qualify for this one, you can't be on Medicaid. Check it out HERE.

I'll post more if I find more. I'm exhausted and going to bed.

Swing or Hammock

I looked for a picture to post, but didn't have enough time to find one... but I am wondering if any of you know of how I can get one of those swings or hammocks that you can hang from your ceiling? Josh LOVES movement and since our basement is not finished yet, I want to look for something to hang up that is safe. I know there are some especially for therapy reasons, and since we end up paying out of pocket for everything, I wanted to get something cheaper. It just has to provide the movement he seems to need so much. He was in a baby swing until he was 17 months since he is small enough to fit. He was happy as can be to sit and swing all day. But he is finally too big.

If you know of any websites or anything that you have come across that may have something like that... please let me know. You can leave it in the comments or even e-mail me.

Thanks! I hope everyone had a wonderful holiday!

Getting a Grant

I need to buy a trampoline with a handle on it and I found an AWESOME one on Southpaw's website. The only problem is we're just poor college students. Well, my husband is. He is a grad student at BYU and he gets paid part time to be a research assistant. Next semester he'll be teaching again part time but he gets the same amount of money. He also teaches Astronomy at UVU two nights a week but it's just not enough to cover all our expenses. Not to mention a $335 trampoline. I applied for a grant to get a therapy swing for Marshall and got it but I'm worried they won't give me another grant. Does anyone know where I can find out about places that will buy these things for you? The place I got the swing from was Challenged America. They have a $500 limit so this is not over that limit. I think I'll try it but don't know where to go if they say no. We need a small indoor trampoline. My downstairs neighbors agree. They're nice enough but they get upset when Marshall jumps (which is constantly). Lately, he's been flapping his hands and jumping A TON. He always does but he's doing it even more lately, if that's possible. He's getting more defiant again too. I'm not convinced that upping his dose of Risperdal is a good thing. He just gets used to it and we're back to square one again. I don't know what to do.

For the new year!

I can't believe how fast this year has gone by. It was like a violent shove into 2009! There are a few changes happening in our house this next year. I am excited to be able to feel like we are able to start over!

First, on January 9th we are coming to Utah to visit with Shriner's hospital. That place is like Heaven. We are getting a consult and possible treatment for Pheynl there. I am not sure what we are going to do. If you would have asked us before our Botox consult I would have been on the band wagon. Now we have to hear it all before we say yes or no.

Second, we are getting new braces for Ty's legs. They are not covered by our insurance here in Arizona nor his Long term care. We are paying out of pocket for the first time in 2 years. Its an odd feeling. Shriner's doesn't pay for Titanium so we are just gonna be paying for them. Lucky for us they are 2 grand and not more.

We will be adding swimming again and hopefully we are making strides.

As the mom I have made a resolution to be a better mom this year. Spend more time with Ty. Be consistent with his braces and continue to do what we can to better his life.

Here is to a new 2009!

Anyone tried botox or pheynl that would like to add a few things or give advice?