Get Comfy! This One Might Take Awhile!

Sorry it has been so long since my last update. I would always take full advantage of my insomnia to post an update to this blog. Now days I don’t even have time to indulge my insomnia. Dominick is keeping me very busy. So let me jump right into it.


Dominick now has a Speech Therapist, Heather, who he sees on Wednesday and Friday mornings for 30 minute sessions. He sees an Occupational Therapist, Anissa, on Monday for an hour session. Ashley, our in home therapist from the Easter Seals, still comes on Wednesday for an hour to work with us. The ST and OT is less than a half mile away. Tega Cay Speaks. I should really start playing the lottery more often considering how very lucky we have been with lining up all his therapy. Ashley is such a blessing. Without her I would be sooooooo lost.

Dominick has been making such tremendous progress. Everyone working with him is amazed by his progress. I keep a daily journal of some of his accomplishments.

March 1: Speech Therapy, Dominick went into the gym area and got a sucker, he remembered where they were. He took it into the speech room and brought it to me and said, “Open” “I want sucker”. Both Heather and I were stunned.

March 3: Woke up with Dominick in my bed saying, “I wuve you!” “I pee pee” “Pee pee Potty” I took him to his potty and after a few minutes I almost gave up thinking it was too good to be true. Then the potty started to sing the potty song (Once you go to the bathroom it has a temp sensor on it so it will sing) I think it scared him like he had done something wrong. I reassured him it was okay to go potty.

March 7: Dominick took bubbles to Shannon and said, “Open”

March 8: Dominick participated in about half of the activities at Gymboree. He did sing the bubble song and remembered the actions and movements that go with the song. He has not heard it in over 6 months. He made eye contact with several children and tried to talk to two different children.

March 10: Dominick woke up, walked into living room, picked up my water bottle, drank from it and said, “It is so good, Nummy!” While watching a DVD, I put Dominick on his potty in front of TV and gave him my water bottle. He all the sudden while watching the DVD said, “Oh look.” “ A drum.”

March 14: Bought Dominick a new bath toy. When I showed it to him he asked, “What is that?” With perfect diction!

March 16: Dominick is not feeling well. Very cranky today. Not wanting to make any decisions. Not wanting to participate in any activities or answer any questions. Had to cancel hearing evaluation.

March 18: Dominick is now using, “Stop it” and “No” more. It is exciting that he can now communicate to me when he doesn’t like something.

March 22: We got to OT before Anissa. When she got there Dominick looked at her started to walk into gym room and said to her, “Come On, Let’s Go”. The psychologist opened the door to the gym and I heard Dominick say, “Hello”. Everyone was just laughing at Dominick while watching him in the gym. He is such a HAM today.

March 23: Dominick and I went to swim class. Dominick will not blow bubbles in the water. He did great kicking. He was able to climb out of the pool by himself. Put him in the daycare at the gym. He did just fine. After story time today, just before his nap, he sat up and with each hand he pretended like they were puppets and had them talking to each other. Right hand: Hello Left hand: Hello Right hand: How are you? Left hand: I am fine. How are you? And on and on. It was HILLARIOUS!

March 24: Heather, the speech therapist, did a mini evaluation on Dominick today. She said she is starting to run out of material for him. Says he is progressing much faster than anticipated. Ashley and I worked on getting him to ask for objects by using more descriptions such as color. Ashley says he is doing so great because of all the work I am doing for him. “Patting myself on the back!”

March 26: Dominick is saying, “Mommy” “There’s Mommy” “Hi Mommy” “I Wuve You Mommy”, every day several times a day!

March 28: Went to Hailey’s. Dominick and Kaitlin played together. They tossed the ball back and forth. He even tried to communicate with her. He cried when it was time to leave. Went over to Marcella’s house. He showed off! Dancing and talking. MR. PERSONALITY! Dominick has started saying “Thank you” and “Thanks”.

March 29: According to Anissa Dominick is an “A Type” personality. Meaning he will be very detailed and a great organizer. He is going to be a perfectionist. There is a little girl, Ashlyn, around 10 years old who sees Anissa after Dominick. She is severely autistic. She does not hug her parents and rarely talks or looks at people. Last week she took her nurses glasses and put them on me. She looked me right in the eye. She has tremors and bad ticks. They stopped when she was looking me in the eye. I told her thank you and she got excited and clapped. Then I asked her for “High 5” and she gave me two “High 5’s”. This week when Dominick came out of the gym with Anissa, Ashlyn looked at Dominick and said, “My baby”. She saw he had a monkey on his shirt and she said, “My Monkey”. She touched his shirt and grabbed his hand. They sat in the chairs beside each other. Dominick would look at her and she would look at him too. Dominick tried to talk to her in his Gibber Gabber. They just sat there and held each other’s hand. I am blown away by the connection Dominick and I have both made with her. So is Anissa.

April 1: Went swimming with Shannon and Sage. Sage swam up to Dominick and me. He grabbed Dominick’s arm. Dominick said, “Sage! GO AWAY!” He then tried to either push or punch at Sage. This is great progress! Not excited about him wanting to try to harm Sage but excited because Dominick is trying to communicate more about what he likes and dislikes.

April 4: Easter Egg hunt! While watching TV, Dominick started copying the Progressive Insurance commercial. He knew practically all the words and even used dramatic expressions. I truly believe he has photographic memory. I got video of it. Hilarious. Dominick is dancing to Kyle’s radio show. So cute. Loves dancing with his Mommy!

April 7: Ashley is back from vacation. Yay! Dominick is not having a great, good or even okay day. Not wanting to participate. Regressing and going into his little world again. Doing some of his repetitive behaviors and sounds. We are going to have bad days. They SUCK!

So now you are caught up with Dominick. Now for me! I still have days when I feel like “SUPER MOM”. Able to clean the dirtiest of diapers in a single swipe, able to clean all and organize all and do all and be all and blah blah blah…

Then there are the days when I can’t do anything right. I can’t get task completed. I have 5 million tasks to get done. I am not doing enough to help my son. I am the crappiest wife in the world. I am an awful daughter and sister and friend and mother. I miss my daughter Hailey and I am not doing enough for her. I can’t return phone calls to anyone. I can’t even check my email.

It can take its toll out on you. I need an extra 5 hours in the day! I need a clone. I get no sleep usually. I miss being able to have insomnia and getting stuff done while everyone else sleeps. I have learned I have to make time for me. I have to take care of me! If I don’t I will be no good to Dominick. I also have learned that I need to ask for help. I can’t do this alone.

All of this can add a whole lot of strain to a marriage. There is just not enough time in the day. You have to make time to spend with each other. We had to make time to do something with each other that doesn’t involve ASD or Dominick. Marty and I are taking Shag dance lessons. We get to have a date on Friday nights. We get to go out and laugh. I usually only get to see him 2 maybe 3 nights a week. The second he gets home from work on Wednesday and Thursday I walk out the door. I work on some Friday and all Saturday nights. On Sunday I am so exhausted I don’t want to do anything. Communication is usually only a few words on the phone. All of this can make me feel alone in this sometimes. We are getting through it all! It just takes work!

My dad is the greatest!!! He calls me daily to ask me questions, get updates about Dominick, tell me about something new he heard about ASD, mails me articles from the paper, comes to Dominick’s therapy sessions and on and on and on. I am so proud of him. He told me he just wants to be able to talk to his grandson. He wants to know how to communicate with him and understand what it is like for Dominick. WOW!

On April 1 I put blue string lights up at Lynn’s for Autism Awareness month. Bill and Kitten allowed me to tell everyone there about my story and about ASD. I have been blown away from the stories others have of their own experiences with Autism. Their children, grandchildren, nieces, nephews and friends. I had no idea it has touched so many of these people I see every week. So many people came up to me after to give me a hug, a word of thanks because they had no idea how big of a crisis it has become, to tell me about their loved one, a word of encouragement and a whole lot of praise for being a wonderful mom. All of these people from Lynn’s are such a big part of my life. I see them every week. They make me smile and laugh every day I see them. We tell each other jokes and stories. I have become so attached to them all. I look forward to seeing them. I love them and they are in my heart always.

I have some items to sale for Autism Awareness. Car and fridge magnets, pins, decals, bracelets and key and card chains. Crickett has been helping me sell them at Lynn’s. She is such a sweet heart. If anyone would like to purchase anything please contact me. Or if you would just like to make a donation I can help point you in the right direction. The family-run MOSI Foundation will match your contribution up to $1000.00 for a limited time. This is who I plan on making my contribution to. With you help we will be able to fund more research for these amazing kids.

I want to post someone else’s blog post which sums up everything I want you all to know about Autism Awareness, me and my amazing, funny, brilliant son Dominick.

BE AWARE, BY: BOTH HANDS AND A FLASHLIGHT

Be aware that if you’ve met one autistic person, you’ve met one autistic person.

Be aware that just because people don’t talk doesn’t mean they can’t communicate. And it certainly doesn’t mean they aren’t intelligent.

Be aware that sometimes our kids can’t help it. They are trying, incredibly hard.

Be aware that an open mind and a closed mouth are sometimes the best response to a situation.

Be aware that our sons and daughters are awesome.

Be aware that we will kick the butts of anyone who says otherwise.

Be aware that many public figures and organizations talking about autism don’t necessarily speak for a whole lot of us.

Be aware that a lot of the people who talk the most also have the biggest agendas and the most to profit from.

Be aware that if a parent is trying to do something with a child who is melting down in public, pause a minute, postpone judgment, and reflect on whether that child and parent are facing challenges you do not understand.

Be aware that price gouging on materials and equipment infuriates us. We know some companies do it because we have to have what they sell.

But be aware that we are now a people’s movement, and the power is shifting to us. We will find new solutions, and they will be better because we made them. And we won’t mourn when unethical companies go out of business.

Be aware that we are loyal and faithful to those who support us and unforgiving in our pursuits against those who take advantage of our children and us. And we have very, very long memories.

Be aware that we tend to be very fired up about our children and their needs, and we aren’t sorry about it.

Be aware that if anyone messes with one child, they mess with all of us.

Be aware that we are unapologetic about getting funding for special education, disability services, or other supports. If people want to argue against these programs, that’s their right. But be aware that if anyone says our kids aren’t ‘worth it’, rather than debate them on the merits or lack thereof, we’ll just tell them to go to hell.

Be aware that we are not asking for ’special rights’, which is just code language for discrimination anyway. We are working to give our children an equal chance at achieving their potential as any other child. When discussions turn toward whether a child is ‘deserving’ of such help, all children suffer, and we sink toward a moral bankruptcy that they will inherit from us.

Be aware that our children are not broken, damaged, or lost.

Be aware that the words we use matter.

Be aware that you are talking about our children – my children. And be aware that many of them take those words literally and personally.

Be aware that we may sound angry, but that’s because we are fighting for our children, and we fight this battle for them every day.

Be aware that anyone with a soul would fight for these things for their own child if they were in our shoes.

Be aware that all we want is for our children to have a chance to be who they were born to be – just like anyone else does for their own kids.

Be aware that there are a multitude of autistic adults trying to live out their dreams and aspirations. It’s not just about children; adults need services and support too.

Be aware that we are often very tired.

Be aware that we expect great things from our children, and they often humble us with how far they exceed all expectations.

Be aware that we will never give up fighting for them.

And be aware that I still wouldn’t trade my life for anything.
 BY: BOTH HANDS AND A FLASHLIGHT

Autistic people do not judge, do not play mind games, do not lie.  Maybe we can learn some things from them.

Breathing In & Out Isn't So Easy

I am still going through my 100 Day Kit sent to us free from Autism Speaks.  It is designed to help you after you have a diagnosis of Autism.  I am going through all of the safety issues. 

A whole lot of fear has set in on me.  My Dominick is a "wanderer".  He will take off and not look back.  He is oblivious to his surroundings.  He doesn't even realize I am not near him.  He could run out into the middle of the street and have ZERO idea that cars even exist.

I have to worry about every window, every door, every cabinet, every drawer.  I have to worry about scissors, pens, pencils, cleaning products, medicines, tools, garbage, TVs, book cases and tall furniture that could fall over. 

I have to worry about him getting lost and not being able to find him.  He most of the time does not respond to me calling his name.  He would not be able to communicate with a stranger.  How would he be able to find me or tell someone who he is and who I am? 

HELP!!!  I found my saving grace and it is two websites...  http://www.mypreciouskid.com/ and http://www.lucasworks.com/.  I was able to get a safety kit which includes DNA ID, teeth impressions, fingerprints, ID tags with child info for wallets and car seat, ID bracelets and shoe stickers.  I also get a electronic child locator which attaches to his shoes and alerts me if he gets beyond 20 feet away from me and I can locate him up to 150 feet away.  It is a little blue bear he will wear on his shoe and I will have a locator i can carry.  I also got temporary Autism tattoos that come with a waterproof non toxic pen so I can write his and my info on him.  A medical alert bracelet.  I know I am forgetting some of the other stuff also.

My husband thinks I am going overboard.  I never want to be unprepared for a single event, circumstance or instance.  I do not want to have to look back and say to myself, "I could have should have done more to keep him safe and protected."

On both of the websites there is also great information and history about their children.  I spent hours last night on http://www.lucasworks.com/.  Lucas is a 17 year old with autism and is mentally retarded.  His mother Lauren is the one who started Lucas Works.  She has put so much helpful info on this site and has also shared her and Lucas's story.  I feel  truly blessed after reading about her story.

Next on my project list is getting together a flyer with Dominick's picture and information to have ready in case of emergency.  I am going to go around to a couple of neighbors to also make them alert of Dominick and our situation.  I will make sure to check the sex offenders websites before I do.  YOU NEVER REALLY KNOW YOUR NEIGHBORS.  Plus I do not want to end up on Oprah's couch crying.

I am going to also take Dominick to the police stations and fire department to make them aware and let him see what the police and firemen look like.  Also make sure they have flyers on file of him. 

Getting all the cabinets, windows, drawers and doors ready will be on Marty's list to do.  This will be a great time to get everything in my house organized.  A place for everything and everything in its place.

Therapy is going along great.  Mondays we have Gymboree and then Occupational Therapy.  Wednesdays and Fridays we have Speech Therapy.  Ashlee comes over on Wednesdays after Speech to work with us.  I am looking for a two day a week, half day, "Mommy's Morning Out" kind of program for him so he can interact with other children.  Now the only problem is finding one that will fit him.  He isn't going to participate like the other kids.  He isn't going to listen to the teacher like the other kids.  I am very afraid of him being punished.  Will the teachers be able to understand what his autism is and how it makes him different? 

I am going to sign him up for swim lessons.  Many children with autism are very very very very very very attracted to the water.  Whether it is flushing the toilet, which he must do and no one is allowed in this house except for him to flush, or watching the water come out of the faucet or watching it rain outside, he will stop what he is doing and go off into his own little world.  And it is very hard to get him to come back into mine.  We are going to try the YMCA first.

Breath in, Breath out, Breath in, Breath out.  It is so easy to feel overwhelmed.  It is so easy to feel sorry for yourself.  It is so easy to cry and just want to give up.  I never go down the easy path.

I Love Progress!

Well we have been very, very busy.  On Friday February 12, 2010 we went to Sugar Creek Elementary School to meet the Psychologist, Joanne Shields, and so Dominick could be evaluated for early intervention in the school system.  Ashlee, our in home therapist from Easter Seals, set up the meeting and met us at the school.  Not the closest school to us but not too far away either.  Beautiful school!


We went into a small conference room.  There were some toys in the room for Dominick to play with.  I began answering questions and telling our story, I now have a stock speech.  She began to explain how the early intervention will work and what we need to get done before he becomes enrolled.

They will be working with Dominick on basic skills such as putting on and taking off shoes and clothes, feeding himself, interacting with others, dealing with structure, dealing with stress and how to deal with "NO", colors, shapes, textures, speech therapy and most importantly... POTTY TRAINING!  And so much more.

Dominick was his usual funny, "Mr. Personality", hammy, cute self.  He started his gibber gabber while we were talking.  He would come up to the table, blow with his lips puckered making a loud noise and then start to fake laugh, "HA HA HE HE HA HA HA HE HA".  Joanne made the comment that she is going to love working with him.  After filling out paper work we were done.  Task one done.  Check.

Then on Monday I get a call from Tega Cay Speaks, Speech and Occupational therapy.  Ashlee arranged for them to call me.  Did I mention she is my hero?  They were able to get me in today before my time with Ashlee.  Two great things about Tega Cay Speaks, one, they are less than a mile away from me, two, Dominick can get both therapies he needs in one location.  I go through the question and answer formality and give my "Stock Speech".  She observes Dominick.  Paper work.  Dominick will be attending speech therapy two times a week for 30 minute sessions.  YAY!  Task two done.  Check. The Occupational Therapist will be calling me to set up time for an evaluation within the next week or so.

Ashlee came over after our Tega Cay Speaks appointment.  Dominick lit up when she came in.  He immediately went for her bag of toys.  He pulled out a ball she had on top.  She was working on getting him to answer her and respond to verbal cues.  After the ball she pulled out a puzzle with emergency vehicles on it, a police car, fire engine, helicopter, motorcycle and tow truck.  She would hold up two pieces and ask him which one he wanted.  He did a great job of answering her and telling her which one he wanted.  After he put all the pieces in the correct spots she would ask him what each one was.  She pointed to the police car and asked him what kind it was.  He said, "That’s a car."  WE HAVE A SENTENCE!  Ashlee and I looked at each other in disbelief.  SO HAPPY.

Everything is coming together.  I now have a game plan.  I now have therapies in place for my Monkey. I am getting him enrolled in school.  Man I LOVE PROGRESS!

Today Is My Happy Day

We started giving Dominick a liquid vitamin supplement almost two months ago.  Since then the progress Dominick has made is INCREDIBLE!  Just this past Saturday he made a friend in Gymboree, Ricky.  He played and interacted with him.  And he even participated a little in the activities.  This is a first for Dominick.  Other than Sage, my four year old nephew, Dominick doesn't have anything to do with other children.  He likes older kids a lot better than kids his age.  Then today at Gymboree he blew me away.  He did every single activity.  He sang the songs, he did all the activities, he talked to Miss Terry and Miss Susan, he played with Blake and Gretchen and he answered the questions when Miss Terry asked him something.


I truly believe that the vitamins are making a difference.

Last Thursday Ashlee from Easter Seals came by the house for the first time.  She is Dominick's in home therapist.  From the moment she walked in Dominick fell in love with her.  She brought over a lot of toys to play with Dominick.  She did an evaluation and asked me a ton of questions.  She went over a plan for Dominick and his treatment and therapy.

She is setting up genetic counseling and testing for him.  She is setting up ABA therapy workshop for us which Easter Seals will pay, thank goodness because WOW the cost!  She is setting up Speech and Occupational Therapy with Tega Speaks which is right down the street from us.  She is setting up Dominick to enroll in the school system.  She is getting us enrolled in financial help programs for help with all the therapies.  Baby Net will end when he turns 3 so she is trying to get it extended for us until he is age 5.

Ashlee called me this morning and in just one business day she managed to get us in with Tega Speaks for the Speech Therapy.  He might have to go to another Occupational Therapist because of the waiting list at Tega Speaks but she is checking and will let me know later today and she already has an alternate lined up in Pineville.  She has already got an appointment for us to have an evaluation with York County Schools on Friday.

Ashlee will be coming over every Wednesday for one hour of therapy.  I LOVE HER!  In one day she has accomplished more for me than any Doctor Dominick has seen. She is my HERO!

Today is a great day.  Today is my happy day.  Thank you Vitamins.  Thank you Ashlee.  And best of all THANK YOU DOMINICK FOR BLESSING MY LIFE.

You have to have the bad days to remind you of how great the good days are.  My friend Michelle told me that.  Thanks.

Can't Sleep + Google Autism = Crying

Navigating through so many different websites on Autism is difficult, confusing, depressing, hopeful, interesting and stomach turning to say the least.  I Google autism.  Then I Google autism awareness. Then autism therapies.  Then autism YouTube.  Then autism blogs.  I forgot my own rule I made for myself. Rule: Only digest a limited amount of information at a time so not to feel over whelmed or too sad.  Oopsie.  Not to mention Full Moon and PMS are great contributing factors to my emotional stability right now.

It is amazing the amount of support there is out there. Autism Speaks, National Autism Association, Autism Society of America, Autism Support Network, Easter Seals, Generation Rescue and on and on. The amount of information to digest is endless.  Am I learning the correct information?  Am I looking in the right direction?  For every great response to each organization there is a negative out there as well.

On YouTube you can see a lot of wonderful videos of children, different therapies in practice, informational fundraisers.  There are a few dedications to parents and children with music and pictures that will just get your gut wrenching and tears a flowing.

The blogs are very interesting to read.  A lot of opinions on how vaccines are the cause.  Or how mercury is the cause.  Or how diet will or will not work.  Along with a lot of pictures of beautiful children.

I can't remember where I read this but it went something along the lines of:  
Imagine being in a foreign country for one day not being able to speak the language.  Only recognizing a few words.  Not being able to ask anyone for help.  Not being able to understand anyone and them not being able to understand you.  Not being able to read their reactions to you and you not being able to understand them as well.  Not being able to convey to anyone what you need or want, if you are sick or hurt, hungry or thirsty or tired.  Now imagine you have to live this way every day.  This is the life of autism.

I read someone's response to a YouTube video of a mother who was just expressing her story of her daughter.  We have a similar story.  The anger in response to what I thought a beautiful video of love for her daughter was terrifying for me to read.  One person said, "You quote that more children are diagnosed with autism than cancer and aids combined.  Your child isn't going to die from autism. Autism isn't a death sentence."  You know what, you're right.  It isn't a death sentence.  It is a life sentence.

I can only hope that one day my son will grow out of this.  I can only hope that he will continue to hug me.  That he will call me Mommy again.  That he will be able to go to school with other kids and be able to function as well as them.  I have every hope in the world that this will happen for us.  I have every hope that all these hopes I have of simple everyday activities will be replaced with the bigger dreams I once had for him and still do its just they take a back seat to the smaller ones now.  I just do not have any guarantees that this day will come.  Only the hopes that this day will come.

One in every 110 children.  One in every 70 boys.  That is some very scary odds for the future of this country.  Who will take care of all these children?

To end this on a happier note… We do laugh from time to time.  On our way home from dinner tonight, Marty was getting Dominick to repeat stuff in the car.  Marty, “Say One”   Dominick, “Say One”   Marty, “Say Dominick”   Dominick, “Dominick”   Marty, “Mi nombre es Dominick”    Dominick, “gibber gabber gibber gabber”    Deva, “Our son isn’t autistic. He’s Spanish!” Well it was funny to us.

Patience Has A Whole New Meaning

For those of you who know me patience is something I haven't had a whole lot of in my life.  I hate surprise parties.  I can't ever seem to get a gift for someone to early because I always tell them what it is or give it to them early.  My poor daughter can also testify to my lack of patience.  She knows all too well.  Especially those who I don't have a close personal relationship with.  I have zero patience with incompetence.  Simple tasks that are not followed or are done incorrectly make me want to scream my head off.  Poor Marty, my husband, has been a punching bag for my lack of patience.  I get this from both of my parents.  HARD HEADED!

I used to be a person who would say, "You can't teach an old dog new tricks!"  I would especially apply that one to myself.  I don't believe this any longer.  Dominick has taught me the meaning of patience.

Before we knew of Dominick's diagnosis I would be sitting with him at lunch.  I would ask him if he was done or all finished.  I would get nothing back.  Not a verbal response.  Not a look of acknowledgement.  Nothing.  I would tell him he could get down once he responded.  Just say "All done" or "Finished" or "Down".  He would just sit there and do nothing.  I some days would beg for a response, "Please baby just talk to Mommy.  Just say all done or down.  Please."  I did my best not to let him see me upset or cry.  I did my best not to let him hear it in my voice.  But he did at times.  I wonder if he understood why I was upset or if he can understand.

Potty training is a whole new bag of tricks for me.  I have a potty training video he watches and we have Pee Pee Potty Time where I take him to his potty and put him on it.  He used to sit on the potty for a minute but now he just wants to take the potty apart and play in the bathroom.  I still haven't gotten lucky once with him sitting on the potty.  How do you get someone who doesn't ask for anything to tell you he needs to potty?  How do you explain to someone who might not even understand what you are saying how to use the potty?  I would like to take this moment to thank my daughter Hailey for being the perfect baby and being so easy to potty train.

I never know if Dominick is hungry.  I never know if Dominick is thirsty.  I never know if he is craving a certain food or a certain drink.  I give him something to eat and drink throughout the day just because it is time to eat or drink.  I don't know if he is actually hungry or thirsty.  He has never told me.

Time outs still do work.  He does know when he is doing something he shouldn't do.  And if we have to tell him more than once he goes to time out.  We tell him why he is and what he did and what he should do instead.  Does he understand it all?  I hope so.

I will say I am very proud of myself for not raising my voice and yelling.  This is something very hard for me.  That is usually my first response.  I am a yeller.  I like to raise my voice to a very loud level.  It was how I was raised.  It has been all I have known.  So for me to not yell is a huge step forward for me.  Don't get me wrong, I AM NOT PERFECT.  I have some slips.  But not with Dominick.  I am doing it right with him.

Frustration is a part of life for me now.  Dominick isn't the only frustration factor in my life.  I hear someone say,  "I just wish they would stop asking me questions", or "I wish they would just stop saying Mama", or "I just wish he would leave me alone".  They just really do not know how lucky they are.  I would love to have any of those options.  Doctors are a huge part of it.  The whole process of finding help for Dominick is frustrating.  I am trying to be patient and let the whole process work.  The lack of info from everyone and the passing of the buck is enough to make me explode.  I accept it.  That is all I can do.  I let go.

God grant me the serenity to accept the things I cannot change, The courage to change the things I can and the wisdom to know the difference.

The serenity prayer takes on a whole new meaning for me.  It never had true meaning for me before when I said it.  I didn't have a real struggle to go through.  Now I understand it truly.

The Blame Game

My husband and I had decided back in October of 2009 that we wanted to have another child.  We would really love to have another little girl.  My daughter is now 18 and Marty wanted another child. So we decided after the holidays and the New Year we would start trying to have another child.  I had gone to the doctor and I was taking my prenatal vitamins.  I had been exercising and had lost a lot of weight.  I felt so ready and excited.

When I was pregnant with Dominick we went to the Renaissance Fair and Marty got a dragon wind chime for the Dominick's nursery.  So when we went this year we decided to get one for our future baby. We had already started thinking of names.  Shannon Josephine if it was a girl and Hayden if it was going to be a boy.

Then came the diagnosis of autism.  I went to see my OB/GYN Dr. Soloman, who is one of the longest male relationships in my life.  He has seen me through a lot.  Absolutely terrific doctor.  Enough of the plug, back to what I was talking about.  So the odds of having a child with autism is now 1 in 110 and if you have a boy 1 in 75.  When you already have an autistic child your odds will now be 1 in 75 and if you have a boy 1 in 50.

Dr. Soloman drew blood and tested me for Fragile X gene.  Fragile X is a family of genetic conditions, which can impact individuals and families in various ways.  These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene.  It is the most common cause of inherited mental impairment.  This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities.  FXS is the most common known cause of autism or "autistic-like" behaviors.  Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.  I got the results that I am not a carrier of Fragile X.  So what now?

Dr. Soloman also referred us to a genetic counselor.  She has been extremely helpful in getting Dominick in for genetic testing and counseling.  We are still going to have a little bit of a wait to get in. She recommended we not try until we get back Dominick's results from any genetic tests.  This could take up to a year.

Family history plays in a huge factor.  On my side of the family there is not a history of autism.  On my husband Marty's side there are some cases of autism.  One of Marty's first cousin's has 3 boys all with ASD.  I couldn't even imagine.

So Dr. Soloman opens the topic of donated sperm.  Not something I ever thought I would ever think of as an option.  There it is.  Then there are the options of adoption or fostering.  With adoption I don't think we have a good chance.  Asking your husband if he is okay with the idea of using someone else's DNA to create your child is not easy.  "Hey honey pass the salt and oh yeah how do you feel about sperm donation?"

Now comes the practical questions.  Am I going to be able to handle having a baby and still be able to give Dominick everything he is going to need of me?  Are we going to be able to afford a new baby and all the therapies and school that Dominick is going to need?  Am I willing to take the chance of having another child?  Is Marty going to be okay with not having another child?  Is Marty going to blame this on me?  Is he going to bare all the weight of this on himself?  Am I willing to give up on having another child?

Well we have decided to not have another baby.  My heart is ripped open just by typing those words. Everyday I see the wind chime we got for the baby and I get a knot inside of me.  I see other babies and it takes everything in me not to break down.  I have to go and hide in the bathroom or laundry room because I don't want anyone to see me upset.  I was going through Dominick's clothes the other day and saw a couple of his baby outfits I set aside to save for him one day when he has children and I fell apart.  Just the idea of Shannon Josephine or Hayden was enough to make me mourn the loss of the dream of them.

The most important thing in all of this for me is that it is not my fault.  It is not my husband’s fault.  It is not my son’s fault.  It is just what it is. It wasn't that God didn't give me what I wanted or asked for or that he wasn't listening.  Sometimes the answer is just not the one you want.  I trust in him and his plan for me.  He gives me what he knows I can carry.