When I cry…

I have always enjoyed writing poetry. I have written since I was very young. I have written this for both of my babies. Meltdowns just seem to go hand in hand with Autism. It can be frustration, it can be pure sadness, it can be the the time of day. Sometimes we never know. Sometimes we feel like crying with them. I can’t imagine not being able to use words to express how I feel. Over time I have learned the cues. I have learned what situations may cause a meltdown. I have learned that a tag on a shirt or mosquito in the room can cause chaos for my children. I am sure that my girl knows emotions. She sure knows how to use them too. She can be very verbal. She still has a hard time explaining what the problem may be. Our little man is starting to talk so much more. He still has a long ways to go. I am not sure what emotions he really knows. We have seen him cry during happy times, and laugh at times that are not at all funny. I have always tried to show my children that no matter when, or why, or how long they cry. We are here, and love them no matter what~

When I Cry

When I cry, I don’t mean to make you sad. I just don’t know the words to say.

When I cry, I don’t mean to be so loud. I just need to cry today.

The day is new. The day is different. The clouds are blocking the sun. The wind is blowing the trees around.

I am crying because I don’t like the sound.

When I cry, I don’t mean to push you away. I just really need my space.

I don’t like the smells that are in the air. I think I made you sad by that look upon your face.

When I cry, I want to say the words that seem so easy for everyone but me.

When I cry, I need you to understand. I am being the best that I can be.

When I cry, I try to stop. I just don’t know how to tell you what I am feeling right now.

When I cry, I am trying to tell you. I have to tell you how I feel somehow.

I just want to run. I want to learn and play in my own way.

I don’t want you to touch me, but please don’t go away.

I can feel it in the way you speak, the way you look at me.

I can feel your love in our home surrounding our family.

I know that you don’t think I know, how much you really care.

You don’t have to touch. I can feel the way you love me. It’s always in the air.

I know that you love me. I love you so much too. I just can’t tell you the reason why…

At this moment. I just need to cry.

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The History of our Autism X 2

My husband and I lived in North Carolina for 5 years. We got married in August 2004. I got pregnant and had a pretty much event free pregnancy. We had our little girl on August 19th of 2005. After 36 hours of labor… I gave birth to her in a small town hospital located right in between Myrtle Beach, SC and Wilmington, NC.

When our little girl was born she was 7lbs 9oz and 19 and 1/2 inches long. She was given a very high Apgar score. She was not premature. As she grew she seemed to be developing just exactly where she was supposed to be. She smiled, laughed, cooed, crawled, walked, and even talked within the expected guide lines of “typical” child development. She even was counting in Spanish before she was two. Everything seemed to be going pretty good.

We moved to VT  for a business opportunity that my husband had. We were glad to be closer to home now that we had a child. My husband fell and broke his leg at the home we were getting ready to buy there and was forced to lay out of work for a year. We were forced to sell our home in VT move again and found ourselves back here.

Once we got back here we noticed that our little girl was developing quite well except for one thing….She was scared to death of other kids. I don’t mean that she would just stand holding our hands and hide behind our legs. She would cry, scream, and meltdown anytime other kids her own age were around or we went somewhere that other kids were around. The minute we took her out of the situation…the meltdown was over. We always chalked it up to not living in Maine where she had her family, or the fact that we moved her 4 times in the first two years of her life. She was never around other little kids when we lived away. We always had an excuse for her behavior. We were in denial that there was something “different” about our beautiful little girl. Family members started beating around the bush and telling us that they noticed that our girl was “different” than the other kids. We didn’t want to hear it. Finally one night after a Halloween meltdown outside a home where our girl could just hear the kids voices inside….We knew we had to do something…

We started by contacting CDS (Child Development Services). in November of 2008. She had an evaluation and it was decided that she did qualify for services. She was showing some developmental delays. We started with Speech Therapy and OT. We got a referral through her pediatricians office to the developmental clinic in Bangor. On April 6, 2009 our daughter received a diagnosis of Autism. Our little boy was already one month old at this time.

Our little man came along on February 25th, 2009. He weighed 7lbs 14oz and was 21 and 1/2 inches long. I also had an event free pregnancy with him. I had a long labor of about 32 hours and had him in Machias. He was born two weeks before his due date. One thing that does stick in my head after he was born was that it did seem to take him a little while to start crying. There was no Apgar score given for him but no resuscitation was needed.

He did seem to develop on track. He also smiled, laughed, made great eye contact, sat up, crawled, walked, and I can even remember him singing the alphabet song to me when he was in the tub. We had our eyes wide open with him. We knew what signs to look for. We agreed that he was not showing any of the signs of Autism at first. That changed over time. I am not sure if he regressed or just stopped progressing. Either way…the red flags were starting to pop up.

We contacted CDS again. It was like reuniting with old friends. CDS has done awesome work with our family over the years and I am very thankful that we have had them to rely on. They came to our home. Did an evaluation on little man, and started services. We got a referral from the pediatrician to the developmental clinic. On December 7, 2011 our little man was diagnosed with Autism.

I will never forget talking to the Dr. that day. She said “You guys seem to be handling this OK. We get so many families that get very upset when given the diagnosis of Autism.” My husband and I replied “We can’t change it.” That is it! We can’t change it. We have 2 beautiful children with Autism. I can’t lie to you and say that we have never wondered why, or how, or had a good cry now and again. Does it make us feel better? A little bit yes and a little bit no. We also count our blessings and thank god every day that they do not have terminal illnesses.

Sometimes my heart does shead a tear or two when I wonder what our kids would be like without the Autism. Would our girl WANT to travel to where she was born so we could show her the beach we used to walk when she was in my belly? What funny things would our boy have to say? Would our girl WANT to go have a pizza party with her friends and Mommy and Daddy could socialize too? Would our little boy WANT to sit and color or play matchbox cars with us? We will never know. Then I have to wipe the tears and not wonder what might have been. We have two beautiful kids right now who are growing up in front of us. We try make the best out of everything we can. It may not be a “typical” life, but it is our life. We just keep on rolling and try to find the things that THEY enjoy and do those things as often as we can…. I think we have done pretty good… so far.

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Thank you for Understanding…

Yesterday our little man went to have an EKG at Calais Regional Hospital. He knew right when we pulled in that something was up and he started crying. When we walked in he gagged a few times. I had brought with me a couple Wal-mart bags just in case. We got called into registration. I have learned over time not to hold anything back. I explained to the man that was signing us in that little man has Autism and gets very nervous in some social situations and Dr.’s offices and throws up. I explained that if he throws up it is not the stomach flu and he is NOT sick. The man in registration got us all signed up and even gave us some stickers for him and his big sister.

We were then directed to Radiology where I gave the lady that was at the Radiology window our information and let her know we were there. I also told her the situation and that little man may throw up but is NOT sick. She replied that she would let the people know that were going to be doing his EKG. I thanked her and we waited on the bench across from her window.

Little man cried the whole time we were waiting gagged and coughed a few times. He kept trying to get away from me saying “Ready to go? Ready to go?” about 50 times. He wanted out. It was also a little scary for him because they were asking everyone to wear a face mask to help control the spread of influenza. I surely could not put one on him. I knew he would rip it off anyway and was afraid that if I put one on him he would throw up with it on his face. I took mine off as well because it was just scaring him really bad.

After a few minutes of sitting on the bench the lady at the window came over and opened the window. She said “I understand.” I said “Thank you!” She then continued to tell me that she had a grandson that was now 22 that has Autism. I said “That’s good. Not good that you have a grandson with Autism, but good that you understand.”  She then told me that she told the techs about little man and they were all ready for us.

There it is. In those moments when you feel alone and that no one REALLY understands, you sometimes find those that do UNDERSTAND. I wanted to talk to her. I wanted to ask her how her grandson was doing. What his struggles are? What his strengths are? It always makes me feel better just to talk to someone that does truly understand. If I would not have been spending my time trying to calm little man down I probably would have struck up conversation with this woman. She didn’t have to tell me about her grandson. Maybe she knew it would make me feel better just knowing that she did understand. Whatever the reason…I appreciated it.

When we got into the room that they were going to do the EKG little man gagged. They asked if I needed a bucket and gave me one. Little man proceeded to gag up a little bit, but nothing too much. They asked me to put him on the table and take his shirt off. I put him up there and he just kept looking at them like “What are they going to do to me?” I kept telling him “No boo-boos! No boo-boos!” They asked him to lay back and try to be still. It was like looking at a different child. He laid right back didn’t try to take the wires off and did a great job! He cried the whole time, but did what was asked of him. I was so thankful.

I have to give Kudos to all who were involved yesterday. They were all so kind, gentle, caring, and understanding. I have learned that just laying it all out there and explaining our situation helps in times like this. It also seems to be that (Maybe it is just me) children with Autism are starting to become the more “typical” child. Almost everyone I talk to now seems to know a child, be a family member of a child, or a friend of a parent with a child with Autism. Either way…It is so calming to know that some people really do UNDERSTAND.

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Follow up to EEG

This is going to be a short post. I just want to give everyone an update to the EEG. Our little man is indeed showing the signs of seizure disorder. We will be referred to a Neurologist in Portland to find out what the next steps are. MRI? Medication to control the seizures? We don’t know yet. It may take up to two months for us to get an appointment.

When they did his EEG they also put a wire on his chest to monitor his heart. The EEG also picked up a heart abnormality. He is also going to be getting a referral for a EKG. It could be a  heart murmur or who knows. Our little girl had a EKG at a young age that showed a murmur that was not threatening to her health. She no longer has it. We will be hoping for the same results with the little man.

My instinct as a Mother was right. Although I wish this time it was wrong. No matter what lies ahead we will continue to be the best parents we can be for our children. The road ahead is not going to be easy, but as long as we have the support and love from our family and community that we have always had…We will all be OK.

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He knows who’s who….

My little man is saying more words every day. He always talks about the people he loves. We may not always know what he is saying, but we know he is talking about people in his life. He will say a persons name, and then follow that with a jumble of sounds or jibberish. I would love to know what he is saying and hope that someday we will.

He will look at pictures in a photo album or on the computer and say the names of the people in the pictures he sees. He can identify just about anyone he knows in a picture correctly so we know that he knows people and what their names are.

One of the funniest things he does that I just can’t figure out is if we tell him to say something such as “Thank you Mama” he will repeat what we have asked him to say but with a different name than we asked him to say by saying “Thank you Daddy!” We try to correct him and get him to say what we asked him to but he just keeps saying the opposite of what we ask. I am not sure if he does it just to hear us correct him, if he thinks it is funny, or if it is just to avoid doing what was asked of him.

When my husband gets home from work little man will sometimes say “Hi Mama!” when he comes through the door, or say “Hi Daddy!” to me if I go somewhere without him and come back. Within the last 6 months or so he started saying “Lus Yooou!” which is his version of saying “I love you”. I love hearing him say those words and will often ask him to tell family who come to visit that he loves them so they can hear how cute his little voice sounds saying those words. He will get the “Lus Yooou” part right but always say a different name than was asked of him. I once told him to tell one of his Auntie’s that he loved her and he replied “Lus Yooou Seewa!” Which is one of his cousins! It can be really funny sometimes.

When we go in the grocery store or into Wal-Mart, he will call almost every man he sees Daddy. You should see some of the looks I get when my little man looks right at a random stranger at Wal-Mart and says “Hi Daddy!” or “Bye Daddy!” Surely he knows that these men are not his Daddy. Maybe he just thinks that every man he sees is someones Daddy, or maybe it is just that when his Daddy is not with us he misses him, or maybe these men are wearing a hat, shirt or have the same color hair or eyes as his Daddy and that is why he says it. I really don’t know. It really does make me laugh. Maybe I shouldn’t laugh at all, but hearing that little voice say words whether they are used accurately or not make me happy. We can work out all that other stuff as we go. I will take his words over him not speaking at all….. any day!

 

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EEG or EEEEEKKKKK?!!

Tomorrow is the day of the little man’s EEG. I was sure hoping that we all could get a good nights sleep last night. It did not happen. My little man was grinding his teeth severely, crying, and kicking in full force. We have to keep him sleep deprived tonight. He really should only get a few hours of sleep. It should not be too hard to keep him awake but after having such a rough night…who knows?

He has to be sleep deprived so that they can read some of his brain waves while he is sleeping. He is going to be sedated, but they cut the medication once he is asleep so they can read the brain waves off the medication. The waves will read different while on the medication. The medication is almost instantly out of his system once they take him off it. We all hope that he will stay asleep once he is taken off the medication. That is why he needs to be really tired when we go in. They will also read some of the brain waves while he is awake. Not sure which will be the hardest. I can’t imagine him liking stickers with wires coming off them stuck to his head. He may surprise us though. Just hoping for the best.

Nothing to eat after 6:30 AM for him. He may have a short list of foods but the foods he does eat….He enjoys. His appointment is not until 11:30. He is going to be starved. It is not going to be fun for any of us. It will be the hardest for him. It is not like we can explain to him what is going to happen and he is going to understand it. I think that is what is bothering me the most. The fact that he is just not going to know what is going on. I am a nervous Mama this morning and I know that I wont have any trouble staying awake tonight. Wish us the best of luck! Pray that it all goes well so that we don’t have to reschedule and go through this more than this one time.

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It’s a “sticky” or should I say “poopie” situation…

It is not uncommon for people with autism to engage in fecal smearing. The reasons for them to do it are unclear. This was one of my biggest fears with my 7 year old girl. She never did it and has always had a germ phobia anyway. It has become reality with my 3 year old boy.

The first time our boy came close to smearing we just thought he was exploring. He would stick his hand in his diaper and then look at us like “What is this stuff?” We were constantly trying to remind him that “We don’t stick our hands down our pants.” I think we would remind him of this at least 50 times a day. Even if his hands even came close to his behind we would remind him again, and again, and again. Well it didn’t stop him.

One of the times that I remember the most is a day that my Mom was coming to visit. My boy had gone into my husband and I’s room. He was in there for maybe 5 minutes tops. It is not uncommon for him to go in our room and push his cars along the top of one of our dressers that has a big mirror behind it. He likes watching himself play. I was playing with my girl and could smell that he had pooped in his diaper.  I went to get him to change his diaper and noticed the poop all over his hands. My Mom showed up while I was trying to clean my boy up. Not only was it on his hands…It was on his back, his shirt, the front of his pants and all over him! I knew if it was all over him that the chances were pretty good that it was all over OUR ROOM!

Mom walked in the door just at the right time. She came in the door and I yelled “Mom! I might need your assistance!” Thankfully she jumped right in and started checking out our room. Sure enough there was poop on our rug, curtains, and a few more things. She cleaned up our room while I continued cleaning my boy. I put him in the tub cleaned him up and then cleaned the tub. I was hoping this was a one time thing…Well…It was not.

He did this just about every day for a week. Sometimes more than once a day. I was getting really frustrated and just didn’t know what to do. I tried punishing him, explaining to him that we just don’t do that. Tried getting him to go on the potty. He just screamed and cried. I started searching online for options or reasons he was doing this. Everything was so unclear. Well…the one piece footed pajamas became a close friend of mine. He pretty much lives in the footed pj’s when we are home. When we go somewhere or he goes to daycare I dress him. I hope and pray all the time we are out that he does not do this anywhere else. I keep a very close eye on him if we are visiting somewhere.

The good news is that he is not afraid of sitting on the potty now. He will tolerate sitting there for about five minutes. He has yet to do anything on it yet, but we are taking it one step at a time. We got him some big boy underwear and he is not going for that just yet. We are working on it, but don’t want to scare him away from it. I am hoping that when he is potty trained that the poopie situation will be a thing of the past. I can’t be sure of it though.

I have also started trying to put him in clothing (Other than footed pajamas) more often again just to see how he does.  I am also going to get a couple pairs of overalls. (Just as a backup.) As of today he will try to stick his hands down his pants, but has not done the smearing in a couple weeks. (Knock on wood.) As long as I am watching him like an eagle he will not put his hands in his diaper. All I can say to end this post is …AUTISM STINKS! LITERALLY!

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