On Friday, December 14, 2012, a horrific thing happened at Sandy Hook Elementary School in Newtown,CT.  A shooter forced himself into the school and opened fire killing 20 students between the ages of 6-7 along with 6 adults. He also killed his mother before going to the school. It is very heart breaking, many young lives that just began were ended way to soon. Out of all my fears as a parent, never would I have imagined this. 

My son is 6 years old and he has Autism. When I send him to school I expect that he comes home safe and sound. Some days, I haven't wanted him to come home because of the struggles and overwhelming stress. Today, I feel guilty for that; so I hugged him a little tighter and a little longer knowing that some parents will never get to see their child come home. For some parents, the only thing left is the shoe that they couldn't find a match for before rushing for the bus, unfinished Christmas preparations, the Legos on the stairs, and stains in the carpet. I can't even imagine the pain they must feel. 

In the past year we have come so far in gaining respect and acceptance for children on the ASD spectrum.  In light of these events there are new fears that are now coming up and existing. Our children have always had to deal with ignorance and misunderstanding. Media has brought this to a new level. Whenever events like this occur everyone grabbles trying to come up with reasons why. Sometimes, it is bullying, abuse as a child or mental instability. This time, the media chose Aspergers, a developmental disability characterized by difficulties in social exchanges and repetitive patterns or behaviors. This is a form of autism. It has always been my goal to spread awareness and understanding. 

On a personal level, with two boys on the spectrum, I have always wanted to gain more acceptance for my children.  This is because of the lack of acknowledgement and understanding people have towards children like mine. Many do not understand but make assumptions that the behaviors the children display are simply due to a lack of discipline. 

The reason why this is affecting me is because of a situation that that arose on Saturday. My daughter sings in a youth group and we were at her concert. I allow my son to use my camera during the performance to help keep him calm. I over heard a woman complaining about my son, so I took him out of the room. During the intermission I approached the woman, apologizing for my son disrupting the performance and explained he was autistic.   She immediately understood. The part that bothered me was the comment made to me regarding my explanation. Someone approached me saying that I should be careful what information I share with people. I have not censored his diagnosis since I came to terms with it and that is exactly what I replied back to her. It wasn't until I got home that evening that I understood why she said that. She was looking out for my son's safety because of the recent media frenzy. Today many parents fear sending their children to school and out in the community as others may perceive them as dangerous people. They may notice behaviors and lash on him angrily just because he has a neurological disorder. Yes, neurological, not mental illness!! 

I am angry that Aspergers has been brought into such a gruesome situation.  It hasn't been confirmed by doctor's which makes it all speculation. Speculation by a group of peers that may or may not have kept in touch with him since school. Speculation about when he was "an awkward teenager". I don't know what teenager doesn't go through those "awkward" moments, but this is how society works.  Society needs to be able to make sense of a senseless act of horror.

The stigma that everyone on the spectrum has to live with, is now larger and the fear is greater.  9-11 was yet another disastrous situation that occurred and the same domino affect happened. Anyone who wore a turban or looked middle eastern was targeted; not because they were bad people but because they fit the description.  I have the same fear regarding children on the spectrum. Do I still spread awareness in public or is it dangerous? Is this going to cause unnecessary fear toward my child? Will there be more bullying? Are hate crimes going to occur? Maybe I should stay inside to avoid the stares and comments, but what would that solve? Nothing!!

 We as parents need to be sure not to allow our fears to take control. If we allow this to affect how we spread awareness it will set us back 20 years. Now is the time to say NO, I will not hide away! These are wonderful children and we will not hide their diagnosis or abilities away for fear of others having the wrong information. These are our children and we MUST stand up and fight even harder for them.  We must be understanding of other's lack of knowledge and continue to provide accurate information. We must be willing to keep moving forward in our battle towards research, understanding and acceptance. We are the voice for these children. We are their advocate and no one can change that. 

I want to remember all of the precious gifts that were lost. My thoughts go to their families, friends, and community. I also want to send my thoughts and love to the children, teachers and staff at the Sandy Hook Elementary school who survived this tragedy. My thoughts go to the families of the wonderful staff that lost their lives protecting our young children. There is never any way of knowing what tomorrow will bring so, hug them a little longer, tighter and always tell them you love them. 

Just wanted to share this video that I updated and created. The words were by, Ellen Notbohm. Amazing author! Enjoy

Things have been looking pretty dreary here lately and I have been getting depressed. Charles has a ton of doctors to see about his muscle atrophy and I have been very concerned. Christmas is almost here and approaching very fast. I wasn't even sure how I was going to manage Christmas this year with many unexpected purchases. With lots of thanks to Jessica from Jessica Hester Photography and Ellen Seidman  from Love That Max, who connected me with Betsy Helmick, for your help in making Christmas a lot brighter for my wonderful children. I cannot thank you all enough.



I have applied for a grant from the Autism Society to provide Chucky with a Snuggle Swing, which is sold by a wonderful small family owned company. Sensory Goods was created to meet the needs of people affected with developmental disabilities while understanding the financial needs of those caring for them. They carry an assortment of items including chew tubes, swings, weighted products and even more. I do encourage you to take a look at their products and they are priced very reasonable too!

The owner has two children diagnosed with Autism and understands the struggles. I felt comfortable speaking with him and he was very kind. I had spoken about the swing and he had suggested a weighted blanket which Chucky does not have. He does however have two big heavy blankets that he sleeps with year round regardless of how hot it may be. He had suggested I get a weighted blanket and I had said that I would come at a later time because finances were tight and that was a purchase I cannot make right now. This generous parent did something that still has my emotions on a roller coaster. He bought my son a beautiful weighted blanket with the most comfortable weighted beads he had. I wanted to thank Cal from Sensory Goods for providing my son with this product. I plan on doing a review when it is received and telling everyone what my son thinks. Actually, maybe I will let him tell Cal himself!!

So, things are looking up for the end of December and a lot of things are starting to fall into place. My son's service coordinator also came out to the house and we completed all of the paperwork to get some behavioral therapy started and hopefully some respite. Sometimes things seem pretty bleak but I am so hapy there are caring individuals out there to help bring a little light into my tunnel. I cannot thank everyone enough!! Merry Christmas Everyone, We survived another year and to address January, my cursed month, BRING IT ON CAUSE THIS MAMA IS ARMED AND READY!!!

With lots of love from my family to yours,
Charlene, Chucky, Buddy, Chipmunk and Princess

Tones on Tuesday

Well, summer school has ended and the chaos never seems to end. I clean, they mess, I clean again. Physical fights and screaming throughout the day. I am not sure how every other parent does it without losing their minds. Any thoughts? I went camping with some friends and all of my children and it went pretty good. At least better than expected!! There were a few meltdowns but they were manageable. It seemed to be a stressful trip for me though because I was walking on egg shells not sure what would trigger them.

Nevertheless, we had fun and the best part was the kids faces when they went swimming in the lake. Chucky loved the Orange buoys.  My camera broke when we were there so that is an extra stresser cause I don't have enough right? Chucky has been having toileting issues as of late and I am not sure how to handle it. He is wetting himself throughout the day. Isn't regression great? I am so excited to clean pee off of every floor in my house. Yippeee!!! Sorry for the sarcasm but I did say I was stressed.

I haven't been blogging as much cause it is so hard to concentrate anymore. I cant sit here for more than 3 min without an interruption and then I never seem to get back. When I do, there is other things on my mind and I just cant write. I hope this gets better with school coming up and I can sit down and maybe finish some of the 50 drafts that I had started but couldn't finish but don't hold your breathe. I just wish some of this craziness would ease off for a little while. Well, that was a scream crash boom...... Gotta go!!!!

It is finally the end of a very long and eventful school year. I have found myself counting the days till the children get out of school. Sometimes I am thinking,"Oh my, how am I going to survive the summer?" and other times I find myself relieved that the school year is at an end. I know I have a lot of work ahead of me for the summer and so I really need to come up with an at home therapy schedule. I don't want it to seem like work to them but I want them to continue progressing through the summer. It is heartbreaking to see them regress. I also know that if they are going to regress, it is just going to happen and there might not even be a way to prevent it. It is all part of the territory. 

I hope you all still come to my blog and I must apologize for my absence, but I am not too good at writing when everything seems to whiz past me at lightening speed. Much of my readers probably understand way more than I think you do as we are parents with special needs kiddos. I guess it is time for me to come out of the closet.

Yes, I was a closet Asperger's parent. Buddy was recently diagnosed Tourette's Syndrome and Asperger's Syndrome. This was really hard for me and I am not sure why but it was. Never the less.... I think I am ready to move forward. Buddy had a lot of early intervention until he turned three. At that point he didn't qualify for services. As I have mentioned in past posts he has been having difficulties in school which has led us to having him evaluated. We have been traveling from one doctor to another to try to find answers.

He recently had a Video EEG to ensure there was no seizure activity and it was normal. This was both a relief and frustrating. I think it was frustrating because then it becomes clear that this is a debilitating disability that he needs to adjust and learn to live with. There are no answers as to why he has it or how it occurred but he has Tourettes Syndrome and it suddenly smacked me in the face. I have been in crisis mode since January.  What started as school problems has evolved into much bigger issues with future IEP needs and the road of diagnosis.

Amazingly, I am standing strong and supporting my two boys who are on the spectrum whole heartedly. Fighting for them to receive the services they rightfully deserve and need. With my youngest this was not as hard, it was clearer and easier to accept.  It wasn't as hard to get services from the schools. On the other hand, getting Buddy diagnosed was much easier. Maybe it is because I know how to approach the doctors now. Whatever the case is, I am doing it. I am making sure that Buddy gets what he needs and I am ensuring that the proper treatments are used.


The neurologist, that I just fired, placed Buddy on Intuniv. The Intuniv made him hallucinate and he was paranoid. I informed the doctor that this was happening and she lowered his dose and decided to put him on yet another medication on top of the Intuniv. They wanted to put him on Focalin but I refused. Focalin is not supposed to be prescribed to anyone with Tourettes.  I have to advocate for him.

So, Buddy is no longer on any medication. We are starting an all natural supplement regimen. He also receives  Melatonin at night. The Melatonin has helped him sleep at night which also improves his tics. I hope this enlightens you to why I have been missing in action and hopefully I will be able to climb on board the blogging train again really soon.

What would you do if you could not provide your child with services because the services didn't exist? This is the life of the children in Uganda with Autism. Many of these children no longer have parents and are left to raise themselves and siblings. Autism Uganda works with community members and leaders to bring help to Uganda's autistic orphaned and desperate children.
 
Their mission is to bring a new hope to these children by helping to meet the increasingly high  numbers of Ugandan children with Autism. In order for these children to have a chance to do more with their lives than simply cling to life, they need the basic materials for education. Think of the little boy, Kalumba Mustafa, in the picture, he is only four years old and lives in the Johnson Orphanage School. They don't have parents who give them the hope, love and challenges that they need to succeed.






 Johnson Orphanage School has been successful in providing many of these tools for many children, but there are still many more that need  help. In the village of Bbira, the Center has put up a school house that serves both as classroom and shelter to over 150 Autistic children. Items from pencils to toothbrushes have been donated by many generous individuals and are being used right now to improve the lives of many children. 


Nevertheless, these children still need other important basic needs, such as clean drinking water and a blanket or a mat to sleep on. Recently, they had a water shortage and they do not have the funding to get piped water to the center. They need all the help they can get. If you cannot help financially then please tweet this. Maybe you could pick up an extra package of soap and ask friends to do the same. School supplies to mail to them. Every little bit counts and helps. 


You can help provide these children with a place to sleep, a well from which to drink and a book to read.  I hope that you can find it in your heart to spread this around and help these children in Uganda. Together, we can make a difference, one child at a time.

I have discovered a new way to keep my house calmer. I am not sure how long the novelty will last but for now I figure I better spread the news. Maybe then someone else might find it useful as well. Again, I am not sure how long it will work, but it is totally worth trying it out. My house has been calmer for a week now. That is amazing.

Music has always been a source of comfort to many people. Some people play an instrument and others listen to music. Some can even sing!! My son loves to sing song everything and adores anything that makes sound. Musical instruments make him really happy. This is what prompted me to attempt to ease the school to home transition using a drum. I know, this could backfire right? LOL.. Worst I think could happen is a migraine, minus the bruises. Hey, I get a migraine with the severe melt downs along with many bruises.

I have decided to incorporate the use of a Djembe drum after school. I bought this drum for my boyfriend for Christmas and he has suggested allowing Chucky Cheese to play it. He really lights up and has an infectious smile when he is making music. It is a big part of who he is. I enjoy seeing him so content and it is wonderful to watch him discovering new sounds.

His love for drums is fairly new but was inspired during a meltdown when we discovered that it calmed him. He was able to be aggressive without hurting himself or anyone else. This is a spectacular discovery. I am sure my legs and arms are thankful. His whole attitude and behavior after school seems much better. I am extremely pleased that it is working in this way. Hopefully this will last a while and he will be able to stream his energy towards something very productive.

I would love to get him more musical instruments to explore and eventually I will be able to do this. Hey, you never know, I may just be asked to review a product of this nature (hint hint). Well, I really hope that maybe someone else can try this trick and find it helpful. Coffee cans and popcorn tins work great as drums and you can make a lot of homemade instruments. Enjoy, I know my little man is much happier since I have started this routine.

As I was watching the snow fall outside last night, I considered the prospective that the children may have yet another snow day today. This is concerning for many reasons. They have already used 5 snow days and we only have 6.  His mood reflects the routine change which makes him very difficult to handle, but most importantly, he regresses when there are major schedule changes such as no school.When I mentioned this to a loved one, they said, If he is regressing when he isn't in school then he must not be getting what he needs at home. I took this very offensive and while I do look at my parenting, and judge myself all the time, I also see how much I do for him.

I called the school yesterday and spoke to his Occupational therapist. On a positive note I did this because my son actually came home and told me about school. He told me that his OT made him fall when he was holding her hand. She stated that Charlie seemed to be very off. He was walking while holding her hand and just fell. He didn't trip, just fell. She said that he has seemed really weak lately and is having trouble with some simple exercises that he is used to doing. She also stated that when she mentioned it to his teacher she agreed. After discussing with his OT, I called his speech therapist and while she said that he has made tremendous progress, she also said that his low muscle tone is affecting him. He has trouble cutting an orange and sitting up in his seat.

I see these problems at home as well and over the last two weeks he has had a glazed look in his eyes. Almost like he is physically here but mentally he is in his own world. I really do try to interact with him and teach him. I work with him but if he is not receptive then I give it a break. I think that I am doing the right thing but I really do not know. Am I wrong for not doing therapy every second of our day? I really do try to do everything I need to do and I want to be perfect at it all, but I am not perfect. Another statement that was spoken was "How do you feel that someone else knows how to work with your son better than you?" This brought on the tears.

The statement made me think back a couple years when I couldn't reach him. When I did everything to try to make him look at me. When a hug was rare and he he couldn't speak. It was at this time that I worked with him constantly to try to help him. I asked for help that I guess in other's eyes I didn't need. I should have been able to teach my son. But, I really thought he hated me. He hated everyone. I couldn't hold him to feed him and he wouldn't coo at all. I got services when he was 7 months old. They continued till now and this child didn't speak until he was 3 years old. It hasn't been an easy road and I didn't sit back and push it off on someone else.

Children with Autism do regress. It isn't always a horrible thing, although it definitely feels like it at the time. They regress because of change in schedule and environment and sometimes they regress when they learn a new skill.
Yes, I take time to blog and I take time to interact with other parents. Do you blame me? It is not only my escape but also my way of learning more and teaching others. I can support parents that are in the same boat I was a year ago. I can figure out different methods to deal with certain situations. Mostly, I know I am not alone. I know that it is OK to feel overwhelmed and to speak it freely.  Am I wrong?? Again???

I have other children and as I have mentioned they don't get much of my time. I wish I could change that. Life with a child with special needs changes everything, but it will only affect your relationship if the parties involved allow it to. I think we all need recognition for the positive aspects we have. Stand behind me so if I fall you can catch me. I analyze myself enough and wonder all the time what I could do differently. Unless you can truly relate then don't judge it. It has been a hard winding road and there are times in which we walk backwards but we always get back on track.

Am I wrong for feeling hurt? How would you feel? I guess it doesn't really matter but I question my job everyday and when someone I love has such harsh judgement, I feel more uncertain. Truth is, I know I do my best and I know that I could not change the way it is with him. There is nothing I could have done to prepare for this.

I was awarded the Stylus Blogger Award by Bella at If This Is Motherhood and Lora at  My Beautiful Child Griffin & Autism . I am honored that I was given this award and really love both of these blogs, so I think you should hop over and say hi. I looked at this award and read what it entailed and cringed as I had to tell you 7 things about myself and then pass it along to some other bloggers.

Bella is a mom of two gifted boys who can drive anyone nuts in less than ten minutes. Trust me I hear them in action. She is a devoted Mom who loves her children but must have her coffee to survive the day. I think this is something that we can bond with. We both love and can't love without our coffee. She writes about everything from Poop, no I'm not kidding, to Education and I encourage you to read her lastest post titled, "What Would I know......". This post really expresses some difficulties that most special needs families go through all the time, but it shows that gifted children also have special needs.

Lora is a single mother of a son named Griffin who has Autism. Autism, however does not have him. He is a wonderful young man and his mom loves him to pieces. I can tell by what she writes about him and how she dedicates her life to him. She is a wonderful person herself and copes with struggles of her own as well. She is my inspiration that we can make it through this and alive in the end. LOL... A suggested read would be her post What is Abnormal? This is a wonderful read.

Thank you two for inviting me into your lives and bestowing this wonderful award to me. I guess now I must tell you seven things about myself. This will not be easy but I seriously tried to procrastinate. If I wasn't reading it to my sister knowing that she would correct me I might have tried to post this without it. But, she is listening and yelling for not posting it two weeks ago when she gave it to me. I said I procrastinate right?

Seven Things About Me

1.  I love coffee!!!!!
2. I enjoy taking pictures of anything!! I could take a picture of a stick, but it would be magnificent(at least I would think so!!).
3. Melatonin is my best friend!!
4. I have gained a newfound respect for the makers of coffee!!
5. I am really bad at listing things about me as I disappeared after I had my children. I am now so and so's Mom. 
6. I love to cook unlike Bella, who burns everything, I can actually cook. I know I burned the ham for Christmas but Bella gave me the wrong damn time, so it's not my fault.LOL
7. I really love having snuggles in the morning from all my children. It is the best way to wake up!!

OK... I feel I may have totally cheated at this list.
I will try again

1. My favorite color is blue.
2. I don't like pizza unless it is white.
3. I hate the cold so I have no clue why I live in NY. It's my mother's fault. She had me here.
4. My favorite kind of Tea is mint tea.
5. I love laying in the grass with the sun beating on my face. The only problem with this scenario is I am allergic to the sun. Go Figure!!!
6. I really do love coffee!!!!

Yippee...... Finishing this just made me happy. LOL


Now to pass it along...


The Hester Family - Jessica is a devoted mom of twins who shares my love of photography as well.
The Autism Princess - Another mom of a daughter with Autism. She another wonderful mother.
Mommy Brained Madness- Another Mommy Blogger named Mariah who has three children all under the age of three. This includes a set of twins. I admire her as well. 
Listen To My Words With Your Heart - This blog is so wonderful for me to read and if you live with a child with Apraxia, it is helpful!!
I'm Screaming Inside- this is a new blogger who is just starting to write a lot. I think she just needs to break out of her box and she will be wonderful!! I hope you visit her and leave some encouragement and comments. 
Seven YuckMouths And Autism - a mother of seven children and two of them are special needs children. One with ASD and another possibly ADHD. 

Finally after three and a half years of complete hell and many bruises later my boyfriend grabbed the video camera and started recording the extreme difficulties I was encountering with my son. This opened the doors for my online video diary that I started for my son in hopes to find support and answers. I got great feedback from fellow parents and even professionals that expressed genuine and deep concern for the situation. With that I also received comments that were hurtful and ignorant but I was bound and determined to help my son. If this was the path I had to walk down then so be it. 

After recording a three night torture session, I brought the video to the doctor's office. The doctor watched it and immediately attempted to put my son on medication and told me it was a temper tantrum. This was not the case. My son would wake up in complete rage. The fact is that my son was having Night Terrors, which is common for most toddlers but destined to last longer with children on the spectrum. Chucky was not producing the Melatonin in his system and therefore was not getting restful sleep. I left the office in complete shock and disgust at how quickly they were to medicate the child rather than troubleshoot what was going on. 

I spoke to more parents and even saw another doctor. This doctor stated that I should try Melatonin and to start off at a low dosage. We tried 1.5 mg but that didn't do anything for him then we upped it to 2.5 mg which helped him sleep but he was still awaking three to four times a night in distress. The doctor said 5 mg every night at 7:30 for a month and a half. For most children this would reset their system and then they don't need it. We did this religiously and I must admit that I was scared to stop it for fear of the torture sessions to return. Regardless of my fears I did not want my son to rely on anything to acquire sleep and so I stopped the Melatonin. I must confess that it didn't last long. I kept him off of it for three days and it was horrible. The doctor and I agreed that it was best to maintain the Melatonin continuously. 

He was finally sleeping better. He also showed behavioral changes during the day. Now, don't blow this out of proportion, he was far from an angel. But, he had less melt downs and seemed cheerier. It was nice to see him smile. I am not sure if the Night terrors were because of lack of sleep or if it was because of  dental issues that I was unaware of, but when I stopped it he was having sleep issues again so either way it helps him.

 He complained that his tooth hurt and I scheduled a dental appointment immediately. We saw three dentists that refuse to see him again and he was referred out to a specialist in Catskill. It is a far drive but the Greene Pediatric Dentistry, is amazing with him. He had a lot of dental issues. Six teeth got pulled and two of them were capped. It must sound like I am a horrible mom, but he doesn't eat a lot of candy and hasn't drank out of a bottle since he was a year old. The problem was that like many children with SPD,Sensory Processing Disorder, he could not tolerate the taste of the toothpaste or the feeling of the toothbrush. Brushing teeth always led to a major meltdown. These ended in me almost losing a finger and that was if I was lucky cause he might just take my whole hand off. LOL.. 

As Apples And Autobots tried so hard to relay in her most recent post, Apraxia, it is heartbreaking to witness and hard to cope with. I hope that maybe someone can relate. I compare it to a hamster in a ball, rolling around in circles bumping against the walls with no certain destination. This is how I as a mother of a child with Autism feel many times. Actually I think this is how most mothers who have to deal with the schools and doctors and in many cases family when it comes to advocating and explaining their child. How do you think our children must feel as they grope around for words that seem out of reach?

When you see a child that seems to be acting out or bratty, please try to consider why he might be doing this. In some cases it is as simple as lost words that seem so close to grab but yet their arms cannot reach them. Have you ever been sitting down and tried to stand up but your leg is completely numb and you can't walk? Imagine that being your tongue, making it impossible to communicate what you need. Have you ever needed a drink of water but you have a cold and lost your voice? It is frustrating right? This is how my son and many other children live every day. 

Have compassion, think before you speak, but most of all don't pity them. I admire them, they go through life with so many challenges and so much prejudice as this is an invisible disorder, but they make it and every day even if it only be for 5 minutes I see a smile and happiness. They don't wallow in self pity and they don't want your pity either. All they want is acceptance for who they are and encouragement for who they can be and all they can, and will accomplish.