A Drug Shows Promise in Autism - Technology Review

A Drug Shows Promise in Autism - Technology Review

Clinical Trials

Last week I read an article on Neurology Now about a family who has a son and daughter with Fragile X, their son Parker toke a clinical trial for a medication called Minocycline which helped her son with speech. So I looked into it more online and found Dr. Randi Hagerman at UC Davis was in the process of doing another clinical trial for this medication. I emailed him and within two hours he responded, he suggested another kind of medication that might be more suitable for David. He asked me to have his doctor refer David to him, so I emailed my son's pediatrician and metabolic doctors and hope I can get a referral to see Dr. Hagerman. I know that clinical trials are just that, trials, and not a miracle worker, but just for David to have a chance to improve his life regarding this disorder can benefit him more if I just try instead of saying maybe. So I cross my fingers and see what happens next.

Halloween

This year was tough, the recession did not get me in the mood to decorate for Halloween and to top it off I had no money to buy David a costume, luckily last year I bought a skeleton costume on clearance for 3 bucks and put that on him. It did fit a little snug and I knew that he would not be wearing this costume next year. I toke him to a Church festival near my house that they have every year, he got to play games and get candy. After just being there for one hour he began to get irritable and just wanted to leave, he was tired and I decided to take him home. This year was a little sad for me, I only had two of my kids with me this Halloween, my other two girls are all grown up and on their own. It's funny how you see the changes of the "torch" when one by one leaves the house. My youngest daughter Sinclaire is taking charge of her little brother now that her older sister Elise is no longer living with us, she is at college and living with her biological dad. I am grateful for my kids and how they live up to the responsibility and care for their little brother.

Waterfall

So my son thought it would be funny to go into the bathroom and turn on the sink and let the water run continuously and play with it, I was in the living room watching t.v. with my family and the t.v. was pretty loud I did not hear the water running, so when my daughter went in to the restroom she yelled for me and the entire bathroom floor was flooded with water. While my son just stood in front of the sink with his hand in the water, laughing and smiling at us as we walked in. This was the second time he did this but today was worse, usually I am able to catch him when he just turned it on, so now we keep our bathroom locked for the sake that he don't flood it again. It was funny that he just finds it amusing and smiles at the fact that we tell him no it's bad. Oh well what can you do but just laugh with him.

Guardianship for your disabled child

I read on my quarterly magazine from The National Fragile X Foundation a report about guardianship for our children who are disabled and turn 18. It stated " At age 18, children become legal adults, which means the parents are no longer their legal guardians, even if the children have disabilities". That kind of gave me a rude awakening, I had no idea that my husband and I would still have to file for guardianship for our son. Take the steps early on so that your child remains part of your family and not the courts, they will always need you to protect them and love them.

Non stop eating

David has this thing that he likes to open the fridge and grab for what he wants, if we don't keep him away from the fridge he will keep asking to eat. My son will non stop eat if you let him, so teaching him to control his eating habits was a challenge. We started him with small portions at a time and then got him into a routine of breakfast, lunch, dinner and snacks in between. He use to just put food in his mouth and would stuff his mouth without knowing it, so teaching him about good eating habits was important. Now I am so happy to see him sit at the table and control his eating, we still have to monitor him because if he finds food next to him he will snatch it! So I posted this web page from Fragile X.org and I hope by reading it you will understand how sensory is important to kids with fragile x and how we as parents have to monitor all habits and just go with it and learn from it.

National Fragile X Foundation News: Stop the Stuffing

National Fragile X Foundation News: Stop the Stuffing: "by Tracy Stackhouse, MA, OTR and Sarah “Mouse” Scharfenaker, MA, CCC-SLP From the Spring 2005 Foundation Quarterly We recently had a 2-ye..."

Now hear this

David has some keen hearing, when he sits at the table his back is towards the fridge, as soon as I open the fridge and get out his juice, just by the sound of the twist cap he turns around and gets up to get his juice cup. I tried doing it quietly at one time and he still caught on, funny kid.

Summer School

David is attending Summer School and he was pretty excited, he didn't whine or cry but very impatient when it came to the bus running late on the first day. The bus was suppose to arrive at 7:26 so we waited outside and within 15 minutes I decided to go back inside because it was getting hot. David did not like that but about 10 minutes later the bus came. David was on the bus and ready for a "hot" but fun day at school.

Happy Fathers Day

We went to an Italian place to eat some good pasta, there this place where we live called Joe's and luckily it was not crowded, David does not do well in crowded loud places. As we sat David enjoyed the big screen T.V. in front of him and like always he watches the sports ticker. Dinner was nice until David decides that his done eating and wants to whine about why were still sitting there and not leaving, to our amazement we all actually got to eat. We left and my husbands realizes that he needs to run an errand and re-routes the home direction, David maybe special but he knows the route home and its not long that he see's that we are not headed home and begins to whine even more. Slap on the music, "Alicia Keys" is the CD of the day for him and that calms him down. His cranky mood has been decreasing lately, he has gotten to his old self again, being lovable and hug-able boy that he usually is. Happy Fathers Day to everyone and be kind and patient to the little one's in our lives that don't know any better.

sick and sad

David has had the sniffles since Saturday at first I thought it was his allergies so I gave him his allergy medicine, well this morning he woke up with a runny nose and slight fever, he was also cranky which tells me that he does not feel well if his cranky mood last all day. So I gave him his medicine for his cold because he loves to take medicine it makes it so much easier to tend to him when his sick. All day he has been whinny and complaining about what is on television and his dvd player. He refused to take a nap and was not as hungry as usual he just wanted to snack a lot. So bed time it is for Mr. cranky pants, put him to bed at 8p.m. instead of his usual time 8:30. So we'll have to wait till tomorrow to see if the Nyquil did its job.

Oh oh he had an episode

When my son had water day at school, he came home in a very good mood, he just loves the water. So after he gets in the house I turned on the T.V. to Netflix and put on his Yo Gabba Gabba, he got very excited. Then he just became so over whelmed with his sensory that he got sentimental and began to tear up, whine and then cry. So I had to turn the T.V. off and hug him, sing to him and repeat to him that everything is ok. David has not had an episode like that in a long time, I also noticed that when he walks he wants to turn his foot inwards instead of flat, I acknowledge his new habits because they mean something to me, it could be a draw back or improvement just depending how you look at it. So I wanted to share this with everyone so that they are aware that behaviour in children with special needs has to be paid attention to, you have to assist  your own child and learn from that so you can work with them to improve their daily lives.

Say Cheese

When David was a child it was easier to take photos of him because he seem to be "in the zone" a lot, for example watching T.V. or playing with a toy. Since he has gotten older he is very spastic in his movements, unintentional movements by his hands or just his swagging back and forth. So when we take pictures of David sometimes we get lucky and other times we just get a smudge of his image, it's not easy to be photo ready but it is funny at times. David can care less if the camera is in his face, he thinks its a toy with the red flashing light before the photo, he see's his image in the viewer and thinks its a T.V. David is curious in his own way when it comes to taking pictures and I love that about him.

New Blog Name

I updated my blog name so it would be easier for people to locate it, please feel free to follow and learn something new about Fragile X.

His smile

When my son was born he did not cry right away, he did not roll over and sat up like a regular child would. He did not want to be held at 6 months and he did not want to go outside at 1 year old, he hated the bright sun and the loud noises, he hated the cry of children and the laughter of others. When my son was born he had unique and unusual features, his toes on both his feet were fused together and his pinkies are curved, he has a cleft jaw and a small head. He could not walk until age 5 and he has not spoken his first word yet, but his smile tells it all. He looks at you with his big green eyes and just smiles and nothing matters in this world, his smile makes me laugh and love him even more for what he is and not what he hasn't accomplished. Fragile X is a genetic disorder that affects everyone in the family, it is passed on to the born sons of the mother carrier, so please get a genetic test and help others Get To Know...Fragile X.

mmm chocolate frozen yogurt

After going to the mall and buying Sinclaire a "party" dress for next year's school dances, David had enough of the mall scene as always. So I decided to take my kids to get frozen yogurt at Nubi's-which is our favorite place. As soon as I parked the car he gave attitude and began to make naggy noises, I influence him to come out of the car and went in to get his favorite, chocolate with mm's and sprinkles. As soon as he saw the mm's he got quite and began to put his little fingers inside the yogurt cup, picking up an mm, one at a time. I had to pay and David was smiling now, once we got home he rushes to the table to sit and awaits for his frozen yogurt. Ahhh, the pleasures of creamy tasty frozen yogurt and what it does to a child to keep them happy.

Smack

I was sitting on the sofa minding my own business watching television, when my son comes behind me and "SMACK!" right on my head, I turn to see what the heck happened and there he was standing with a big grin on his face. He wanted something so bad that the previous family member ignored his demands and he chose to smack me for attention of his needs, I for the most didn't get angry just got caught by surprise because my son has never done that before. He is figuring out just how to get some attention in demand, but I let him know, "you don't do that and it's not funny", so I grabbed what he wanted from the fridge and gave it to him. David just wants his needs met and if thinks he can always get what he wants from me, I don't think so, he may get it from Dad all the time, but I love my son and treat him just like any other normal child.

Hairy situation

My sons hair is starting to grow again, I do not want to cut it I would like to see how he would look with long hair, kinda like a skater would have. The problem I'm having is waiting for his hair to get to that length, his hair goes out of whack, in all kinds of directions. It just looks messy and untamed but patience is the key and I hope that I can wait to see the outcome. For now I just put his hair in a fo-hawk (small mohawk). Ok lets give it 3 months and hope for the best.

Love the band

Today David and I went to my daughter Sinclaire's Spring concert for band, David loves listening to them, while eating a jelly donut that I bought for him, he was relaxing. Until I got up to throw away the napkin full of jelly, he grabbed my arm and looked at the napkin as to saying "where are you going with my donut?","no more" I respond to his gesture and he smiles and lets go. There is no getting around David when it comes to food but he did love the band and enjoyed the evening.

Sleepy time

Today after school David came home tired and he toke a nap for two hours, well that nap only gave the will to stay up longer. After his bath and brushing his teeth, I put him to bed as usual and when I went in to his room to check on him, he had gotten out of his room and entered mine. He was in the dark playing with his piano and musical light toy, laughing and sitting on the floor. So I gave him 30 minutes more to play and then I put him on my bed and turned off the light. I went back to the living room to watch the Laker game and within 10 minutes he pops out into the living room playing peek a boo, he knows he is suppose to be in bed, so playing peek a boo is a way for him to get us distracted. Well this time his peek a boo will not work with me, so while walking him back to my room for bed he tried the peek a boo one more time, no chance. Good night, my love.

Back to School

Well spring break was too long, but I had a chance to take my kids to a museum and Chuck E Cheese. David really enjoys the Telly Tubbies ride, he just smiles and cracks up on his own. So this morning David tried to pretend that he was asleep, but I just had to get him ready so he doesn't miss the bus again. Yawning and whinning off to the bus he goes, yes! I got him on the bus, so now I won't be late for work. Toke my daughter next to school...she forgot her Clarinet and I had to turn back, which just made me late for work. So much for my achievement this morning.

Oh Sunny Day

Today was a beautiful day and I did not plan to stay in doors with my kids, so we drove to the San Bernardino County Museum in Redlands and enjoyed the day there. We got to see live insects and Sinclaire got to touch it, the assistant asked if David would touch the snake, "no...he'll just tap it to hard thinking its a toy", I said, so the assistant just smiled. David really liked being there, he loves the fish and he got to listen to some bird calls. Right after we decided to go get ice cream and as soon as we parked, David had a fit, he just wanted to go home. So, we waited and sang to him and then kind of dragged him out, he was upset but soon after he tasted that yummy yogurt and was watching You Tube video's of Noggin, he calmed down. I was nice day and it was better then sitting at home watching T.V.

Tantrums

This week David has had a rough time, he is going through his sensory overload tantrums-that's what I call them. What ever is on television, depending on the sound and noise it brings out, David will start to cry and scream as if someone had just spanked him. He hasn't really wanted to eat as usual and he scratches you out of fear or out of anger because of the noise he is listening to or what he has just watched. I remember the Disney movie intro would make him flip, so I am assuming that certain pitches of sound make him cry at some vulnerable moments. David has to be talked to in a calm voice and comfort him at the same time, take him away from the noise and put him in a quite room for him to calm down. He use to do this  when we would go out to eat, so you can imagine how difficult it was for him to be around all those people and have his sensory go out of whack. I have  the patience to overlook the fact that he is pulling my hair, screaming and crying at the same time I am trying to leave the place. I am not embarrassed at what my son does in public because as far as I know it he is normal in my eyes and should not be treated any different then any other child.

David's love for rice pudding

David has a thing for rice pudding, and not just any rice pudding, but Ariza rice pudding. He can tell the difference from the package if you try to give him another brand, even by taste he will reject it or just simply toss it to the floor. You don't mess with a kid and his rice pudding, when I get it out of the fridge he jumps (literally) with joy, its so cute.

David's communication

My son, who doe's not speak at age 10, seems to find his own way of communicating with us. For example, he grabs our hand and directs it towards the item or thing that he wants, and he knows what he wants because I will give him one item and he would push my hand back towards the specific item. When he was born he did not cry and they had to spank him a couple of times to get him going, around age one he babbled and made goo sounds, at one time he even repeated the Spanish word for water "agua" for a while but then he just stopped saying it. He never did say any clear words, as for sign language, it was hard for him to use his fingers because he twirled his hands to often and crissed-crossed his fingers a lot. At school they used PECS to identify objects and ask for a specific object and that really helped him.Speech is still a goal in David's IEP and I will not give up trying to teach him how to respond with words, he understands what you say to him, as long as its a simple command with or without hand gestures, so I know that he will be able to learn, even though there is that neurological  issue that his brain does not comprehend how to respond. I believe it is possible and if takes years for David to say his first actual word, I am willing to wait.

Spring Forward

Every time we "spring forward" or "fall back" regarding our time, my son's sleeping schedule goes out of whack. He now falls asleep late and wakes up late, the little booger just wants to play before bed time. He has been going to school late for this past week, it usually takes him 2-3 weeks to get used to the time and then his back to normal. I always try to get him use to the time change by putting him to bed early one week prior to the change, but even that seems to be a challenge. He thinks it's the funniest thing on earth when I put him to bed early because he knows his own body clock and he just laughs about it, like telling me "mom...really...bed time?" even though he  can't speak, its in his thoughts.

No sleep for the restless

David has been going through his stages of not wanting to sleep when prompt to do so, he gets very excited before bed time and refuses to sleep in his room. When I lay him to bed I count to three and turn off the lights and usually he will knock out within minutes, but lately he gets out of bed and begins to play with his musical toys, I enter the room and in the dark sits my little boy laughing at the lights. So, I say to him "meme time" and direct him to my room where he flops on my king size bed and makes himself at home. With in a few minutes he falls asleep, next to his daddy, who he loves to push to the edge of the bed.

David's bus ride

When I stepped outside to get David from the bus, the driver told me that David had gotten upset and was crying because he had taken the seat belt straps away from him so he does not chew on them. I know those straps are filthy, the bus driver stated that last time David had the straps he splattered the entire windows around him with saliva...lol. It is a texture thing that David enjoys chewing on things and then swings them around causing his saliva to spread everywhere. I guess I will need to attach his soft toy to his belt again, keeping him busy, the bus windows clean and germ free. Thanks Richard (bus driver) for your patience and understanding.

David

Today my son came home from school, mind you he is developmental delayed but the kid knows what he wants. As soon as I bring him inside, he heads to the kitchen looking for his juice cup, if its not there he grabs my hand and takes me to the fridge and navigates my hand towards the juice. My son who is 10 does not speak but his ability to communicate with hand gestures and sounds amazes me daily. He is so routine that if you alter his day drastically its chaos for him, and he will let you know exactly how he feels. Crying and whining till things go back to normal for him. Having a special needs child has been a challenge since day one, but I would not change it one bit, he keeps me going and I improve on my patience daily with him. If you have a child with fragile x or developmental delay and need some little advice, just keep it simple, routine and constant repeat of his goals and they will achieve what you expect them. PATIENCE is the key...don't forget.

Starting a Special Education PTA | PTA

Starting a Special Education PTA | PTA

Zombie Dance Party! - Face Off-Episide 106

Zombie Dance Party! - Face Off-Episide 106: "Zombies come to life and dance for the contestants and judges."

First thought

I decided to create a blog to talk about my experience with special needs children. I have a son who has Fragile X Syndrome, it is a genetic disorder that is passed on from the mother to her sons, daughters are only slightly affected because we have two X chromosomes as to boys who have X and Y chromosomes. Referring to fragile x, when the x chromosome is affected, causing developmental delay. I would like your stories, opinions, news or information from anyone who has children with special needs. My blog gives ideas of how to care for our children daily and setting goals.