Speech and language....sometimes it's funny

I found thus and i didnt publish it....but i sm now, after the fact. So, my 3 1/2 year old is having a speech burst. He is  having a moment of clarity. I love it. The funniest thing he has said just happened today.

He was sitting in a chair and farted....like a big fart. He then looked at me and said," I thought I had to go potty, but it was just a fart." *oh, gross! You are all boy*  I then replied,"Dude! You might have to go potty and not just pray for a fart." He then just said with a bit of 'tude " it was just a fart".

So now a year later he facts real loud and says, "I farted! ha, ha, ha!"

He is all boy!

Listening to my girl

It is a long weekend which in our house is a crap shoot if it is good or not. Friday night was busy with a girl scout thing, (she is selling cookies soon so local peeps watch out!) Saturday the hubby wanted to get out of the house....so we did. Later that night, my daughter said, "Mommy, I want to stay home ALL DAY tomorrow." I replied, "You have a birthday party tomorrow so you cant stay home all day." She said, "ok, go to the party but stay home the rest of the day."

See, not that long ago, my daughter just wanted to stay home on weekends. it caused a lot of friction in our house. My husband hates being home on the weekends, he needs to get out. I am so busy during the week that I want to stay home, relax and maybe catch up on laundry. Our daughter is so worn out from her week that she needs time to just be her and recharge. She wants to watch some TV, play with her stuffed animal Owls, color, draw, read.......Our son.....I dont think he leans one way or the other just yet.

See with her being at home she doesnt have to be "on". She can flap, spin, crash on furniture *much to my telling her a thousand times to not crash onto the couch*, her conversations are a bit mixed up, or lacking detail, and nobody faults her for it at home.

We did go to the 'happy birthday XXXX Swimming party!" She had a great time, I had a great time! She was in the pool burning some energy off and for those of you not in the know, swimming is a huge sensory activity. She is getting sensory input over her entire body and it is awesome for her! If we could carve out more time she would be in swimming a few times a week. *sometimes this balancing things and kids suck* She ate pizza, cake, ice cream the whole thing. Had a few overwhelming moments but for the most part she worked through them. She asked to leave the party room for a break.....she could still hear everything in the hallway so it wasnt ideal but she did it. She still needs people to read her cues but every once in a while she can tell someone what she needs. We went home and then it started.

She crashed. She needed sleep, rest, time by herself. Some of that is hard with a little brother that wants to hang out with big sis all.the.time.

Monday she didnt have school because of the "Martin Luther King JUNIOR had a dream' holiday. She went to the "tool store" (which in our house is anything from a hardware store, home depot, tool stores, sometimes walmart). She picked out stuff for her derby car, hung out with daddy, got McDonlads. She came home and just snuggled into her blanket for a good hour. She then had ABA therapy and was all over the place. she wasnt wanting to work, she had enough! Less demands were asked of her, more 'playing'. She doesnt have to be "on" with ABA, hell, they have been with her for years and know how she is.

Therapy was over and she crashed into the couch and watched TV for a bit, just snuggled up in her blanket, needing quiet.

With all of us, behavior is communication. When my daughter hides under her blanket, or on the rare occasion that she is under a table she needs it. When she says she needs quiet, she needs it. When she is crashing into my broken up couches, she needs it. Slowly she is needing these 'weird' behaviors less and less. Slowly, she is able to use her words to get someone to understand what she means. Slowly, with a lot of very hard work she is making it in our world. Sometimes, I need to listen better to go into her world too.

time warp

I was proof reading a friend's paper for a college class. It was about when her daughter got diagnoses with Autism. It was written beautifully. It also brought a lot of feelings back. it brought me back to almost 4 years ago.

I mean nobody wants to be told that something is wrong or different about your child. Nobody. I know that when you are beating your head against a wall for a doctor to listen to you and they finally find something you are like, 'see, I told you!' but you still never really want there to be time that someone has that conversation with you.

As a parent, your dreams for your child die. You mourn the loss of what you thought your kid would do or be like. You are faced with so many questions that it is overwhelming. I have heard those words twice. The funny thing is, with my son (the younger kid), it was almost expected. It was clear he was going down the same path as his sister. With my daughter, it was.....more than a punch in the gut...more like a bus hit me and my world ended-but I didnt die. I had to be strong for my kids. I was in 'planning mode' it really is what I do best.

I was planning our next steps, planning to get enrolled in military specific programs that help special needs families. paperwork, and more paperwork, setting up more therapies, special education preschools......you name it, I did it.

Both times we got the bombshell news my husband got deployed right afterwards. So I did what I do best, plan accordingly.

I fought doctors, fought Tricare (military health insurance), fought the school district.....I fought for our kids tooth and nail. When I finally got our daughter settled into this full time therapy life, I had to do it all over with my son. For him, the biggest hurdle was fighting Tricare on one little thing. At the time, a child had to be 18 months old before they can get ABA therapy. Now, you are told once you get a diagnosis that ABA therapy will save your life. For our family, it has. The fact that my son had to wait 6 months before he can get ABA therapy......it killed me. You are told early intervention is the key, the sooner the better......and my son has to wait. For me it was like saying your child has cancer and you cant get chemo for 6 months. That is unacceptable!

We did start other therapies with him (some we had been doing already) and the day he hit 18 months is the day he started ABA therapy. Now Tricare does not have an age requirement for ABA therapy, and I would like to think that I had a small part in that. I made many phone calls, emails, letters, etc. and I got others to do the same and policy was changed!

Since that day in 2012, My kids have grown, they have become a part of our world. Since that day, I have changed. I have become tougher, stronger, louder. I have lobbied military entities to help our families, I have become a voice not only in the school district, but in our community. I am a strong voice for my children until they can find their own. I became a special needs parent. Tough, and strong.

Got Guilt???? I do!

This morning was hard, and I feel guilty!

My son crawled in bed with me at 6 am to snuggle. Now I really wish that he would stay in his own bed but I know that one day he wont need to snuggle with me so.....I said,' if you can climb up here, you can be here'. He was then trying to say something and for the life of me, I couldnt understand, he was frustrated beyond belief......this was how our day started.

I then got up, dressed, laundry, got the kids up and dressed.....even with a visual schedule I have to put the sense of urgency in them. *for all that is Holy, they can not miss that bus!* My son then starts crying that I wont help him get dressed. He is perfectly capable *finally* to pick out a shirt and pants and put them on, if he needs help, I help, but he has to try. Then my daughter is crabby because her brother is crying......again......I am exhausted writing this.

Then the struggle to eat, brush teeth, shoes, and get on the bus. He pitched a fit the entire morning. There is even 'stay n play' at his school. He loves when the parents come, he loves when we come. My husband had to be at work and I.....couldnt do it today. I feel guilty that I dont have it in me to be with my kid at school. I feel horrible that he struggles so much. This is my chance to show the school that he is awesome with his communication device and I am choosing to not go! I feel horrible that he is going to be upset that I didnt come.

My daughter struggles to get ready and stay on task (but somehow she is a superstar at school). She loves school, she loves her "friends" (in her world everybody she can see is a friend), she loves to learn, etc. My son hates to socialize, he tolerates other kids in his space..........

My kids NEED so much of me and I am tired. I feel guilty for not having enough of me to go around, I feel guilty that I am writing this now instead of being at his school, I feel guilty that I am never at my daughter's school. I just feel guilty.

I need to drop this guilt like a bad habit. I know that I am doing the best I can. I know that my kids know I am there for them. Now I am picking myself up and dusting myself off and I am going to get to work. The guilt can go.

The reality is not real

This is going to get real today.

I reconnected on Facebook with a friend from high school about a year ago. Her posts were always positive, uplifting, upbeat. We had a few conversations over the year and all of them she was helping someone out. Whether it was giving me encouraging words, asking me if I could help out a friend of hers......she was always looking out for others, that was her nature. I found out that he upbeat, positive, great picture taking life wasnt so perfect. She was a victim of domestic violence, that usually doesnt just happen over night. It saddens me that someone is going to grow up without parents, it saddens me that a life was taken senselessly.

Now, I am not going to pull out actual statistics but here is what I see:

Military families see increasing domestic violence, increasing divorce rate, you throw special needs kids in the mix and I am sure that it blows up the numbers exponentially. There are factors that others dont have per se, like multiple deployments, multiple moves, PTSD, other health concerns related to military service, lack of family support......the list can go on. I am not saying that military families have it more difficult, just different.

You add in social media......the picture perfect couple, the fabulous lifestyle, the M-Effer Pintrest S&^%!.......usually, that is not the reality.

The reality is that the neighbor down the street could be beaten by their spouse, the kid at your child's school could not have food to eat or their own bed to sleep in. The person you work with could be a drug addict.


You really dont know what goes on behind closed doors.

You dont know that we took a billion pictures on Santa's lap and 2 seconds after we finally got a "perfect picture" one kid makes a face and the other was crying and we got looks for *worst parent of the year*.  You have no idea if your friend's perfectly spotless house ....maybe she is a hoarder upstairs. The neighbors that are 'keep up with the Jones' type' might be in debt trying to do so......who knows.

My point to all of this is, you never know what is really going on with people unless you are with them behind closed doors. We all need to stop measuring our worth by Pintrest and perfect FB posts. We need to lift each other up. We need to not think there is a stigma that you cant get help. I know I cant do it all, and my life is not a picnic by any means, but I go to support groups, I see a psychologist for ME! Advocate for what YOU need! Get respite to get a break from your stresses.

If I need help and support, I reach out!!!!!

I just wish more would do the same.

Are we the next voting demographic

Now, I normally dont get very political because usually folks can not have a civil convo about any of it. But this article is popping up all over my FB feed, I read it and honestly, not impressed. I mean, thanks for mentioning Autism but that was all I got out of that.

Here is the article I am talking about, enjoy......or not.....whatever.


https://www.washingtonpost.com/news/post-politics/wp/2016/01/05/hillary-clinton-outlines-autism-proposal-calling-for-nationwide-early-screening-initiative/

Basically, in a nut shell. Hillary wants to get funding for diagnosing, treatment, finding cause, helping adult autistics after they 'age out' of the system. That is great, really, it is about time. However, how would this pass congress? how would it be paid for? How would a national plan look? Usually to make things better, you have to get rid of the red tape......wouldn't this be adding to the tape????

Most people that are in our boat do not care about what caused it, we need tools to help our family survive the day to day stuff, and to help our kids on the spectrum become adults on the spectrum and be the best they can be. My goal as a parent is to get my children to be functioning, independent, productive, members of society. Now how is that going to look in reality, I'm not sure, we have a ways to go still.

Also, my one kid's needs vary from the other.....how can you make a plan that would encompass ALL spectrum individuals?

This is my theory. I think *they* (assuming there will be more politicians that jump on this band wagon) are seeing the parents/caregivers/autistic adults as a voting demographic. Not that they dont truly want to see some change but it is really hard to know what needs done, how to help, etc. unless you live in this world. Here's an idea, not just listen to families, but listen to autistic adults!!!!! *what a novel idea*

Ask families what would help, what therapies should be included *like why is ABA therapy not part of the ACA*. Tthat if your medical insurance doesnt cover something and your kids dont meet guidelines for state assistance those families are left out in the cold to pay for everything on their own......that is a struggle. When your kid 'ages out' of the system at 21 they are shoved off the cliff-they have years long wait lists for services.....again, qualifying is something else.  Ask Ari Ne’eman, president of the Autistic Self Advocacy Network his input on what needs to be done!

What I am asking all of us in the trenches to do is to stop and think about your vote. I know that everything sounds great but how would this get done? Keep writing to your congressman, keep the pressure on. Join advocacy networks to make your voice heard. I am part of American Military Families Autism Support.....it is a 'boots on the ground' grass roots network that helps military families with children on the spectrum with navigating insurance, military moves, and much more. We have made a difference in shaping tricare policy for our kids. Our voice is getting louder.

Make your voice heard, make the politicians accountable.

The war at our house

ok, so how many of you are super lucky to have 2 spectrum kids, really??? just me??? Well, just like *regular* siblings they can have similarities and big differences. The biggest division of our house is meal time!

Yes, I said it! MEAL TIME!!!! My girl is a eat everything in sight and then figure out if I like it, healthy eater. My son.....he is the OH, F*&$ something is on my plate ......let's just say it is a struggle, I mean he is a selective eater. He eats 10 foods-well, ok now I think we are up to a food group and every once in a while he will take a bite of something willingly. I have tried bribes, feeding therapy, ABA techniques, you name it we have done it. This child, for being not exactly skinny, will not eat. His staple is a PB&J and if it wasnt for every school being nut free that would be cool but......yeah, the whole nut free thing kinda ruins it for him.

Meal time is EPIC....not to be confused with that youtube thing, Epic Meal Time-my hubby loves those guys. So in one corner we have the kid who will eat her entire dinner, and seconds, and then circle around you like a vulture for scraps. Then at the other end of the table we have the young one refusing to eat. I mean, telling someone, 'when they get hungry, they will eat', has never met a child on the spectrum. My son is especially stubborn *God help me!*. We have to get him to take one bite of the non-preferred food, watch him look at you like he will kill me in my sleep, then he will choke it down, to celebrate. Talk about exhausting!

Feeding therapy is almost a slap in the face. Dont get me wrong, I love the awesome Speech therapist, and the equally awesome O.T. but when he eats 30 teeny, tiny, bites of spaghetti for them and looks at me like 'die, B*%*%' ...I think I want to cry....and then give him spaghetti for the rest of the year until he eats. *see my previous statement about if they are hungry*

ABA techniques are great......until you are out in public and he is melting down over the fact that his hotdog is on a bun......yeah, dude, just take it out of the bun-problem solved!

I have relaxed some about this war....I have to remember to pick my battles. If he eats 3 bites of dinner and then wants an apple-go for it! When he hasnt eaten anything most of the day...which really means, he protested lunch at school.....and then he wants a bigger snack-ok, but you will have to take those 3 bites at dinner *I know he really hates me deep down*. After he chokes down those 3 bites, we will celebrate every victory.

I am hoping that at some point this war will be over.......one day. #warishell

waiting for a song

It is always funny how you have 2 kids that are so similar but yet vastly different at the same time. Our Son is 3 and he has had a bit of an uphill battle. He has autism, epilepsy, apraxia of speech and a few other conditions, mostly neurological in nature.

Autism just means that he has difficulty with social, communication, and behavioral domains that keep him from functioning in the world with the rest of us.....in a nut shell. The apraxia is just something that really throws a wrench in it, it is a neurological condition where your brain and mouth there is a disconnect between the two. There are times that he can talk and it is clear, and then there are times that he is trying so hard and it comes out like gobblygook no matter how hard he is trying.  He does have a communication device that he uses but the school isnt on board with it.....that is another post for another time. Then the epilepsy can sometimes add to it.

Anyway, my point is that he does love music, despite what the school says. He does not participate in any musical or singing thing at school at all, they think it is his personality......oh. no.....they dont know the real him.

He can air drum with the best of them, we have a piano that he loves to play, we have guitars, a drum, a tambourine. oh, and his sister thinks she lives in a Disney musical, so music is all around us all of the time. She sings Frozen (yeah, still!) and he smiles along and tries to get the words out but they dont come. It is like that a lot for him.

AND THEN IT HAPPENED!!!!!!!!

Him and I were sitting watching Disney's The Lion Guard for the 100th time and he sang with the show.....he sang the words, they came out and he was proud of his voice! I would not of believed it if I didnt hear it with my own ears but he did! He sang a song and he did it well!

He sang his song, was be boppin' his head, as I was tapping my toes. We was just happy as a clam.

Go T!!!!!!

Keep on singing!