Autism As A Whole

Somethings come with time and they seem as if they will never happen. Our children seem to accomplish things on an entirely different timeline then most. I do believe though that it will happen when they are ready. This goes for everything and then when they do happen they are not overlooked. AT ALL!!! We see these "small" accomplishments and rejoice to see progress.

My son potty trained amazingly by age three. I hear that is a big deal with all of his challenges. I was thrilled that I had been able to teach him such a trying task. It wasn't entirely easy, but I guess I had the upper hand. He did not like and could not handle diapers. The feel of them on his skin really bothered him. He hated being wet and well, poop was horrible for him. I guess that explains why he was poop trained before pee. Isn't that the opposite? Point is together we accomplished it and it was a celebration. We did this before he was verbal!! That shows me a glimpse of his determination.

The only thing he has had trouble with was wiping and he would just scream until I went in to help him. Today he said he had to go poop. I knew I had to follow him in there in a minute and so I did. I was ecstatic to see that my son was wiping himself on his own. It was the first time ever!!! I am so proud of him and it was just the boost I needed. We have been having a really tough week and this was a spectacular beginning to a wonderful week.

I am sure that we will have many hurdles to jump over and times of frustration, but these so called small moments make it a lot easier. When I think back 3 years ago, I had a little boy who couldn't speak at all. He still had a smile that could light up a whole country. Three years ago, my days were filled with physical aggression and screaming non stop. Two years ago, I still had a non verbal son who barely looked at me.  One year ago, I had a son that was hardly understood and I hadn't slept in 3 years.

Thinking about that has made me realize that we have made progress. I went from a son that couldn't walk, talk, or have any eye contact. He didn't know his numbers or colors, and the therapists thought he had hearing loss. He was a very angry toddler and bit constantly. I was always on egg shells and he had no fear and felt no pain. Today, he knows how to count to five and he knows most of his colors. He speaks well, walks and looks at me every now and then. I am happy to be his mom and I think that he is happy I am his mom.

So for today I leave you with the thoughts that every small accomplishment snowballs into something wonderful. It is something that we can't see in a week, month and possibly year. We have to look back and reflect on where you were and where you are know. Together you will accomplish great things. Sometimes it takes patience, understanding, determination, and encouragement but it can be done. Look beyond what you see everyday, I guarantee you will see growth in your child as well as yourself.

My son is having serious meltdowns. It is so hard to just sit there through them seeing him so upset. This all gets harder when he is flailing his arms and screaming in my face. I start losing my patience and feeling overwhelmed. Anyone else feel like this? I think I have the solution. It may differ for different children but hey, it is a thought.

Image by ibtrav via Flickr Well, it has been a really rough week.. wait I meant month but I think today was the worst day all month. Chipmunk isn't feeling well, her belly hurt all day. I made her a warm bath and told her to relax for a little while and see if she felt any better.

I was talking to her for a little while when Chucky,started screaming my name. Which seems to have never ended since he woke up. I tried to ask him what he wanted he just kept screaming Jocelyn. So, I let him go into the bathroom but told him he had to stand near the door because his sister needed privacy. I figured this way he could speak to her and get what he needed. That didn't happen. This led to a screaming child in the bathroom with sick daughter in the tub. Did I mention that the bathroom echoes so we     hear this rant twice. Boy am I lucky.

 I asked him what he needed and got screamed at some more. Being as there was no consoling him, and he was winding up and flailing I decided to remove him from the bathroom. Did I mention there was a sick child in the tub? Well, removing him was not an easy task. AT ALL!!! He grabbed onto the door, shoved it closed almost catching my fingers and was kicking me. I really couldn't calm him down and he over powering me. It is at times like this that I feel completely helpless. I was overwhelmed and exhausted. We were only 10 minutes into this meltdown. I asked my daughter to ask a friend to help. I only got him to the hallway, which isn't that far, and he threw himself down on the floor. Then it got really bad. I know how much worse can it get? Trust me a lot!!

He continued to scream and I sat on the floor trying to calm him. BAD idea. Actually I should have stayed as far away from him as I could. As I sat down I saw an angry ranting child and I think his eyes were red at the time, shoving the back of his head into my mouth. I bit my damn lip. Ouch!!  Oh, let me remind you again, There is a sick child in the tub!!! Unfortunately I was not with her and she is staying there. Hey, think about it... at least if she pukes, which we all know I can't handle, it's an easy clean up!!  After all the head butts, I decided to ask him how he was feeling. Some crazy person actually suggested trying to get your child to recognize their feelings when they are in this state. It is supposed to help them calm down. Ummm.... word of advice...IT DIDN'T WORK!!

This made him worse. He slapped him in the face 4 times and was kicking the shit out of me. I was stumped. Anytime I spoke to him it got worse but after hit three, I grabbed his arms. Then I said hitting is not ok. Charlie is feeling very angry. He was possessed, really. Have you ever seen The Exorcism of Emily Rose? That was what my son looked like. Just to clarify, he is a sweet boy and I love him so much, but he was seriously off the wall!! I could not calm him. I tried showing him what he could do when he was angry. Then as I sat helplessly in the hallway with my possesed son, I thought about what I could do to reach him. It was at that moment that I noticed a metal popcorn tin. Hmm... Drumming, hitting.... this might work. My friend is a musician so, he started drumming on the tin and singing a bit as well. My son was still screaming but after a minute he seemed to calm. It was enough to talk to him. Wow, there is an end to this!

He calmed enough during the drumming that we could take him into our roommates room where there was a full drumset. He was in there for almost an hour drumming away. It really did calm him. I asked him what he needed from his sister and he told me!! He just couldn't verbalize his needs at the time. He was frustrated. He needed an outlet!! So, I guess we should all own a drum set?? I can't afford one but, it worked this time. That was not the end, it did happen again later on in the day actually, my whole day was filled with meltdowns. The final one, I just gave in. He wanted his sister and he was worried about her. I think this was part of his anxiety and he didn't know how to cope with it.

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.

Do you ever wonder if you are failing as a mom? Is it your fault your child is coming home with poor grades when you know she/he knows the work? I am having those thoughts and they are eating me alive. When I started this blog it was meant to provide some insight into the life of my whole family. How it is for all of my NT children to live with a child with Autism. How it affected my children's relationship with me and vice versa.

I mentioned in a previous post about how I felt conflicted. I felt like I couldn't comfort Chipmunk when she needed me and monitor Chucky during his meltdown. Chucky needed me there to ensure that he didn't hurt himself, but Chipmunk needed me there to comfort her. This is really challenging. Am I the only Mom who has this struggle? Well, you are probably wondering what prompted this post.

Today, Princess brought home a 66% on her science test. It was about simple machines and I am certain she understands them. She loves Science. It makes me wonder if she is just having a tough time because of how much of my time is devoted to her brother. I really try to help her with things but it is so hard. I am constantly interrupted and she gets frustrated. I do try and I am trying different approaches. I just am not sure if this is her way of protesting or a teenage issue. I want her to do well. I don't want to have our days filled with one problem after another. I want to be able to enjoy my daughter again.

I have tried to do things with her before she goes to bed at night. We have played her favorite game and sometimes we just sit and talk. Well, she talks cause I can't seem to get a word in edgewise. I think I mentioned this in my Talk-a- Holic post. Does anyone know if there is a talk-a-holic anonymous group? We even started taking photographs in the morning before her brother woke up. She really seemed to enjoy this and so did I. But, unfortunately I think with all of the recent snow days and such things got off track. I am going to try to start this again.

Honestly I think if she did as much listening as she did talking she might actually be able to do the work correctly. Sometimes I think that I am too hard on her, but most of the time she just isn't doing what I know she can do. It bothers me though that I don't have enough patience, arms, legs, mouths, hands, or ears to give equal attention to all of my children. I guess tonight I just feel inadequate. Inadequate as a mother. Incapable to do this job that is in front of me. Can anyone relate? The job of motherhood with multiple children is hard enough but when you add special needs children to the mix, I think it can become overwhelming and very very challenging.

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. 

My daughter is six years old and extremely smart. She has always been ahead of the rest of the children her age. She does wonderful in school but seems to be having some issues at home. She is stealing. I am not talking about a candy from the store or small items.  I am unsure about how to deal with it also because she primarily lives with her father. I am concerned because he laughs many things off and seems to push them under the carpet.

 My son Buddy made this owl and I thought he did an amazing job at it!!!!
This is a drawing my ASD son made for me. His sister was telling him it looked like Abraham Lincoln if you turn it upside down.

Well, to ease my frustration just a little the school board called. I am not entirely sure if this means anything but, we shall wait and see. I explained, yet again, what my concerns and issues were and they pacified listened to me while expressing their understanding my concerns. I had already written out my letter regarding the problems I was encountering. I still have decided to send the letter out. Due to all the snow issues it is going in the mail on Monday. Actually I think I will drop them off at the district office and request that they be stamped as received. I have kept copies of the scripts from the pediatrician and the letter to ensure that there is a paper trail.

The school board stated that they were sending an email to the OT at my son's school demanding that he receive therapy immediately which is a step forward. While the Occupational therapist has been taking some time for Buddy, and I told the board this, he is not receiving the therapy that his 504 plan entails. The lady I spoke with said she didn't care that the therapist was helping him, she wanted them to abide by his plan which would give him individualized one on one OT. This made me smile. I felt like maybe, and I may be leaping into the dark abyss, I was not fighting this alone. I think I may have someone backing me that has authority.

I also took the time to explain the custody agreement and how we make this Co- Parenting work. While Buddy's father is good at some things, when it comes to advocacy and school meetings, I am more aware and I deal with those issues. I am not saying that he isn't trying to be involved in those areas but he doesn't understand them. I might add that sometimes I feel as if I am really going easy on him and his lack of participation regarding this.

He himself was totally unaware of the school problems. You would think that Buddy's report card, that was NEVER mailed to me, would reflect these difficulties. The teacher stated that she spoke to him several times on the phone, but he does not remember this. I am now changing the way I deal with it all and while my day is overflowing with the responsibilities for my youngest son, I am now taking full responsibilities for my oldest son as well. This might seem confusing as it really has always been my job as his mother.

Buddy and Chipmunk live with their Dad due to some issues with my youngest's father. I wanted to bring them back to my home but with all the issues surrounding Chucky it just didn't seem fair. Chucky was very aggressive as he was entirely non-verbal , so we decided to maintain their schools in his district and have joint custody. Buddy would visit and leave my house with bruises and terrorized by his brother. This has seemed to work although I miss having my babies home with me all the time.  When the children lived with me, I was responsible for all school issues. He didn't attend the meetings and he was totally uninvolved with the early intervention Buddy was receiving. Thia didn't concern or bother me because they were always with me and it was quite evident what they needed. I assumed that because they lived primarily with me it was my sole responsibility to ensure their needs were met.

I think I got so caught up in Chucky's needs that are right in my face that I tried to allow Buddy's father to take some of the responsibility that I was always liable for.  I see now that that may not have been the best thing to do. When it comes down to it, I guess in a round about way I am responsible for the lack of communication with the school. I could have been calling them and pushing for his needs. Instead I was communicating with their father thinking that everything was fine, but knowing how poorly he is with any form of advocating. I miss being as involved as I was and I am going to change that. I have called my children's teachers and requested to speak to them. I will make this work for the better. I will turn this around. It is my hope that maybe through observation he may learn how to do this and pick up a few skills, but in the end, I have to advocate for my children. I have to ensure they get what they need.  I am MOM.

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.

I hope you decide to join along and feel free to give me ideas too. I definitely will need support through this.

I can attest that it would not be what it is now. I would not have the undersxtanding of other parents that are going through a really rough time in the store as mentioned in Mid Life Army Wife's post. I may have been the parent that was looking thinking OMG... get control. That was before I had awareness. That could have been me before I had experienced this firsthand. I think this is part of the mindset that family members go through. I am not saying it is right but, I can remember how I myself felt about my son's behavior before I could figure out what he was dealing with. I remember thinking that I wasn't parenting him right and he was out of control. I truly thought he hated me as a very small child. 

I am not saying that family is right by rejecting our children. It actually makes me sad. My mother has a very hard time with my son. She doesn't even really try to connect with him anymore. My son will not openly invite you to play with him and he may not come up and be warm and inviting when you come over, honestly he might not even realize you are there, but that doesn't mean he doesn't want anything to do with you. He does not have the social skills to interact and he anticipates that if you want him you will go to him. I cry when I think about the wonderful little man that my mother has chosen not to embrace. He is strong willed and very smart. He has a lot of challenges every day that neuro-typical children don't have to overcome but, slowly he is doing it. In the end he has all of the people who have stood behind him and pushed him to keep going to thank. It is unfortunate that she will not be one of those people.

I must be the devils advocate as well though. If you approached someone and they didn't seem the least bit interested would you continuously attempt to connect or would you find yourself backing away? In the beginning it was all behavioral issues that my mother couldn't deal with but now it goes so much deeper. It hurts because we were able to talk a lot when I was younger but now I feel an anger. Anger because my son is tossed to the side only to be mentioned when I speak of him and even then it is a brief conversation. Maybe it is too much for her to handle that her Grandson is not "Perfect", but what is perfect? He is perfect in my eyes. I try to ignore all parental guidance that my mother rarely offers.  Unless you can walk in my shoes, don't tell me how to do it. 

On a positive note, my sister Melissa has been amazing with Chucky Cheese. She will come over and engross herself with him. Even when he doesn't seem receptive , which you can read about here , she still trys. I love this interaction and so does he. I know that there are times that he catches her off guard and she feels a little hurt, but she pulls it together and remembers that he isn't trying to hurt her. I love her for this. She is an amazing Auntie and he is lucky to have her around. I chose to focus on this as well as all the wonderful "outsiders", that I really don't consider outsiders. They are more like my family as well. They give me the strength, courage, and hope to move forward. Anger holds you back.

This post was inspired by: http://spectrummentor.com/2011/01/06/when-your-family-members-reject-your-child-on-the-autism-spectrum/