Progress, Milestones, Changes :)

It's been a while since I have posted... For those who are new to following: Thank You!  Life got pretty busy (seems likethat's my excuse every single time I fall off the blogging world). I have started a new job...so after 4+ years of being a stay at home mommy...I am now a working mom again! Logan is adjusting well. Much better than I expected. :)

His favorite things right now are: Legos, dinosaurs, documentaries (all things ocean, animals, planets, and cooking), playing/doing obstacle courses with our dog, and school recess. He likes most foods, however, he is becoming more picky as he grows older. He loves deep pressure and massage - he actually asks for it now. The weighted blanket has been a lifesaver. Recently he has become a little "teacher." He enjoys explaining how things work, why things happen, cause and effect, etc. It is so awesome to listen to him tell me the reason things happen. He listens to everything and soaks it in like a sponge.

In the last few months we have made significant progress. Logan is slowly learning to understand joking (not with everyone, but with Neil and I). The other night he helped me cook desert. I wasn't going to have any so I placed 4 plates on the table...but I put his plate where my spot is. He looked at me and smiled and said "Mommy, I know you are joking because you have a smile on your face. I can laugh now." For him to recognize that is HUGE. We have worked so hard to get to this point!

Another big thing he did was introduce himself to another child. If you aren't familiar with Autism, doing something like this is another HUGE gain. Social skills do not come easy. We were down at Riley in the waiting room at Dr. Walsh's office. I was verifying all the info was up to date and getting ready to pay our co-pay when I completely froze. I heard him say "My name is Logan, what's your name?" to a little boy sitting at the computer. The registration ladies celebrated in the joy when I exclaimed "Did you just hear him?! He just introduced himself! Do you know how long I have waited to hear that?!" It was the best ever. Logan and the little boy sat at the computer and just played to their hearts content.

He is taking baths - and not screaming. This is another big step. We have gotten to the point where he will actually put his head back in the water and let me wash his hair. He's learning to trust that I will do it carefully and slowly (as not to get water on his face). 

He's learning to ask for help! I feel that a lot of his meltdowns come from frustration, lack of confidence, and fear of failure. He doesn't want to try if he is afraid he won't be successful. This can be buttoning his pants, putting together a lego set, puzzles, learning to ride his bike, etc...things that require fine/gross motor skills. Last night we had a half an hour meltdown because his car "broke." When I tried to help him put it back together, he lost it. He wanted to do it himself, but after his first failed attempt, he threw himself on the floor and sobbed for a good 20 mins. I gave him his space, then had him hold my hands while I did it... then I held his hands and helped him to do it...by the end of the night he had mastered how to put the top of the car back on. I think it's about helping him to be patient and building his self confidence.

Last month, Logan was diagnosed with Tourette's Syndrome in addition to his ASD. I am still in denial a little over it. We have had 3 specialists confirm the diagnosis, but I still have a hard time accepting this. I don't know what the deal is...maybe a little embarrassment over the stereotypical stigma attached to Tourette's...and then again a part of me really believes he doesn't have it. So I won't really elaborate much there. Maybe some other time.

I am so thankful for the progress we have witnessed in the last few months. It always seems like a rollercoaster. He will regress, progress, and plateau. I am completely enjoying the progress at the moment! :) Thank you for catching up. I've missed this place! ;)

Autumn


 

The Back To School Blur!

So you are probably wondering "What's New?"

This Summer went by FAST. We took a trip to Mexico without the kiddos (gasp!) and I survived! It was a fabulous time away and a much needed break from daily life. I enjoyed the sun, sand, a few cocktails, and the peace and quiet. Don't get me wrong, I love my kids to death, but it was so nice to be able to make last minute decisions like what to eat, waking up and deciding to head into Cozumel, Playa Del Carmen, going to the little Mexican bars, walking on the beach, swimming without having to count 3 heads over and over...you get the drift! ;)  Being able to do all of these things without planning ahead was just peaceful and liberating!

We are on our 3rd full week of school. It has gone much better this year than last. A *huge* plus is that we got a new female principal who is awesome! This makes the anxiety level drop a little bit. She has been very, very supportive and understanding. She even makes recommendations that I agree with and we just "click." She has given input at the meetings, stood up when we have had a concern to the "others", and even is so in tune that she will pull me aside and say "What's bugging you?"

My biggest complaint was that the meetings seem so rushed...and that we skip around the IEP like crazy. No rhyme or reason...only because so and so needs to leave at this time so this has to be covered, lets look at this, lets go back to this part, etc. I need things to be organized and go in order...if they don't I just can't take it! Mrs. P (for principal) let me express all of this and she even cried with me because she is going through the exact same thing with her own son in another school district, and although she is a "big wig", she has no clout in another district, she is simply a mom trying to advocate for her son. She get's it and understands. We laugh, joke, and cry...and it's just fabulous to have this after the disaster of last year.

Logan gets more time with aides in the classroom, they have been trained in his specific area of disability (Autism/Asperger's/PDD-NOS), and they have worked so well with him thus far. I am very thankful for this!

Mrs. P even invited me to a "child specific training" where all of the aides, spec ed teacher, gen ed teacher, autism consultant, school psychologist (VtheB), counselor, and principal were present. The special education teacher went through and explained all of Logan's accommodation's and her experiences with Logan. Afterwards, I was given the opportunity to present a Power Point that I had made specific to Logan. I called it "Learning Logan." It was a presentation that included how I believe he best learns, what his strengths are, how things he does can be interpreted, etc. It was a joyous day to be able to share all of the things I wanted them to know so badly...and I was praised by the whole entire team (except for VtheB) for what an exceptional job I did presenting and how informative it was. I even took a second to stand up and pat myself on the back - Okay, NOT REALLY, but it would have been funny! ;)

We have another meeting next week to correct some things in the IEP - which shouldn't be an issue - because the principal is completely backing us on the things we have concerns with. Can you believe it? It seems like a dream!

The things that are coming up: Psych appoint next week to discuss some new things: Logan has developed some "tics." These are rapid blinking, shoulder shrugging, and this trembling/shaking thing...all involuntary. We also have an appointment with the pediatric neurologist in Oct. This is to hopefully find out about his muscle weakness/pain that continues to get progressively worse... The geneticist is very concerned about it...and to be honest, so am I.

My "End of the Year Resolutions" are as follows:

1.) Blog more - it not only relieves my stress, but keeps those that do care informed.
2.) Get back to the gym... (I did run a mile today and thought I might die)
3.) Connect with other moms that are facing the same challenges we are

Hope you all have a great week!

Autumn

(p.s. not spell checking or re-reading this...you will have to just forgive any mistakes :)

 

Understanding, Acceptance, and LOVE

I haven't updated in a LONG time. This Summer has kept us busy - specifically me - with the therapy appointments, family nights, full-time job of keeping the house in working order, and doctors appointments... All of the things that go with being a stay at home mom / special needs mom.

In December 2012 Logan was diagnosed with Asperger's. You can read about it here. Last school year was a complete headache. Phone calls from the teacher every single night, visits to the principal (who we could write an entire book on), it was nearly impossible to get the services he needed, but we prodded on and we got the IEP. We were super excited, only to learn his IEP was pretty much a skeleton. It had zero accommodation's, mainly behavioral, but nothing to *help* him. They shot down our diagnosis and said he didn't qualify for services pertaining to his Asperger's because the testing that they had done didn't show that he "educationally" qualified under that dx.

Over this Summer we decided to have the formal ADOS testing - this is a specific testing for Autism. It was a 4 hour long battery of tests for Logan while being observed by a clinical psychiatrist specifically trained in autism. We also had to fill out questionnaires. The tests included an IQ test, evaluating speech, reading, writing, fine motor, gross motor, monitoring mannerisms associated with autism, computer testing, etc. It was in depth. It is the "gold standard" for diagnosing. They will NOT give you a diagnosis of autism unless all evidence gathered through this testing is conclusive. To be honest after leaving the day of testing I wasn't sure that he would receive the diagnosis. I knew it in my heart, but that day he was having a "perfect" day...and a small part of me thought maybe, just maybe, they would tell me that the initial diagnosis was wrong...that he was just a neurotypical child and I was crazy.

Yesterday, we were given the clinical 100% sure diagnosis of Autism. After meeting with the neuro psychiatrist we were informed of so many things we had never known. We learned his IQ. We learned that the testing the school had done was extremely elevated - that in the speech eval, OT eval, and his kindergarten teachers evals that he was in the "handicapped range." The neuro kept saying - "I just don't understand why they didn't diagnose him." "It seems like they had an agenda." "All numbers gathered and evaluations done pointed to autism at that time." He went over everything and confirmed what we had suspected and had been given a diagnosis of a year and a half ago. Now with all testing, done it became clinically concrete.

Logan will now qualify for a yearly grant to cover ABA therapy - which our private insurance doesn't cover. We will have this evidence to take to school to show them we followed through with what they recommended and got a second opinion - from a doctor that they respect - and hopefully this will change the way some things are handled.

Of course, I have already gone through the "grieving" process of accepting that I have a child with special needs, but it still is hard to take it in. It is once again confirmed. It just makes me want to be the best advocate I can possibly be for Logan. I never want to fail him. I will do everything humanly possible to make sure his education is top notch and he is treated fairly. I will be his voice. My job is to help them get to know Logan as I know Logan. The Logan they "knew" was a child that disrupted class, got out of his seat without permission, couldn't keep his hands to himself, upset the teacher, upset other kids, and had temper tantrums. The child that they were constantly telling to "go sit," "stop interrupting," and "I already gave you the instruction's." I am going to be the mom that provides them with the education and understanding - I will explain through my words, with books, and articles what sensory seeking, over stimulation, meltdowns, and distractions really are. I want them to be fully aware of what a child with autism goes through and how their brains work. Maybe, just maybe, if they take it to heart and really listen...they will fall in love. That is my hope. That is my goal: Understanding, Acceptance, and LOVE.

Autumn

The Unspoken

I have always been honest on this blog - and will continue to do so. I believe that by sharing some of our families struggles, it may help someone else, or at the very least make them feel less "alone." There are often times in my parent's of special needs groups that that is a common thing - a lot of parents feel alone in the journey... Parents of children with special needs have quite the challenge - and then you add those challenges to a marriage - and it doesn't make it easy.

Neil and I have always been a great team, we've come a long way in our marriage, but recently our marriage isn't up to the proper standards. This year has been especially hard - with the challenges we have had with Logan's school, Logan's different struggles, his latest back pain issues, etc. I am a stay at home mom - Neil works - and he just recently added a second job to the mix. To say that our marriage is solid right now would be a lie. It's rocky.

I spend most of my time taking care of the kiddos - and primarily making sure all of the needs of Logan and the girls are met. I am the mediator between Logan and his sisters. I am the schools primary contact. I am the taxi to and from therapy. I am all of the cliché things that a stay at home mom is known for. I am fully absorbed in our children.

Neil spends his time between the hospital - 12 hour shifts as a paramedic - and the rest of the time in the garage working on his own business. He does this to provide for our family - and I know it is a heavy load to carry.

Lately, we have been at complete odds with each other. I am grouchy because all he does is work, comes home from work to work and ignores me (hello, I have ZERO adult conversation because I am with kiddos ALL day), we disagree on the most petty things, etc. He gets grouchy because I constantly ask for his time and he is tired and feels the need to work non-stop, I want to get out of the house/He wants to stay at home, etc. It has NOT been pleasant.

I know all marriages are hard, they are not a walk in the park. There are struggles every married couple will face. The question is how much is too much?! We agree that we won't give up - you won't fail if you try - and we made a promise to love each other forever. We do love each other. It's just one of the "Seasons" of marriage where the grass looks greener on the other side. You look at other couples with envy. You wonder "why" and "how much longer" this season will last before you can move on to the next. We are ready for the next season.

I am more at fault for holding grudges, not being forgiving when I should be, etc. Neil is at fault for poor time management balancing work and family. Maybe our vacation to Mexico will help us reconnect. "This too shall pass." We will not be part of the 80% (divorced parents of special needs kiddos). We won't give up. It just takes time and a readjustment in priorities on both parts. Sooooo...if you pray...pray for our wisdom, forgiveness, and future.

Thank you for taking the time to read this. Love you all! Xoxo.

Irony

In the past 8 months (at least) we have avoided going to church - left our church - and have been searching for a church that fits us. This has been a major internal struggle. Don't get me wrong - we LOVED our church home - that we had attended for 9 years - but as time went on - Logan was born, he grew, became a challenging child, and was much harder to control. Church became a challenge. Our "home" church didn't offer children's church - and nursery was only for kiddos 5 and under. Logan turned 6...and we attempted to take him in to the sanctuary with us. There were many Sundays we had to carry him out screaming, crying, and it was quite embarrassing. It wasn't comfortable for him or us. It felt that we were looked down upon because not everyone knew Logan's story, or how he handles certain things, etc. His tantrums, meltdowns, and outbursts were distracting to those around us and made it hard for us to hear the sermon - so all in all, we weren't really getting what we needed.

Today - for the first time - we tried yet another "new" church. Where the ironic part comes in, is that a certain person whom I have disliked since school started (she is on the IEP/Case Conference Committee, did the evaluations that I strongly disagree with, we have butted heads, we snapped at each other in the last meeting, etc.) was the one who was working the children's church check-in station. I am sure when I looked up and my brain registered who she was - the look on my face was priceless. Why would God put me in these case conferences with this lady...and THEN put me FACE-TO-FACE with her OUTSIDE of school!!! He is a humorous God, that I do know. He loves to challenge my comfort zone, my ability to be forgiving, my ability to be kind and humble. He knows his plan...and I am just along for the ride. Oh what a ride this is! :)

Something we did learn is that they have children's church, the people that run the 1st grade class will be there through the Summer (consistency is KEY with Logan), the teacher was a previous first grade teacher and her husband  is her assistant (having a male figure is a plus)...and it just seemed to "click." Logan was happy, well behaved, and the teacher just seemed to understand him and what worked for him.

The other SUPER-DUPER cool thing is that they have a ministry that is designed for children with special needs, and if Logan were to get too comfortable or overwhelmed, the program actually designates an adult buddy for him - and will attend all church services with him - and build a relationship with him and has training in understanding the special needs realm.

The sermon spoke directly to my heart. Sounds completely mushy - but it was all about children. It discussed our goals for our children, what we may "want" for our children, what God wants for our children, how we should teach our children to their learning ability vs. expecting all children to learn the same way, etc. One of the things the pastor mentioned is that children don't come with manuals - manuals are geared to a certain make and model - and there are far too many "makes and models." I cried most of the sermon. I am not great at replicating the message - but it was awesome. God knew exactly what I needed to hear.

However, tomorrow I have a meeting with this lady that I have had my differences with, to view her raw data of the testing she completed for Logan and to discuss the parts that I disagree with. Go figure! Funny how things work! :/

This next week will be full of challenges for us - the data meeting, the second half of our case conference (the WORST part where we go over the FBA,BIP, IEP, etc.), therapy appointments, and trying to wrap things up for vacation.

Thanks for stopping by and checking in! Hope you all have a great week. :)
Autumn

Shenanigans!

With all that has been going on, I have kind of neglected the blogging world. Some things I just didn't feel like sharing - I didn't want you guys to see how grouchy all of the stress with Logan's school caused me. I was not a happy person and to be honest, I probably couldn't have typed an entire sentence with out at least one curse word. :)

I will try to give you a run down in a "nut shell."

We disagreed with the consequences that were given to Logan at school. He hit a child at recess because the child had told Logan he was going to play with him...and then didn't. Not okay to hit for any reason - I agree. However, he was given an entire week of eating alone and missing recess - he had to walk the perimeter for all to see. I went to kindly discuss my concerns with the principal in hopes he would lessen the severity of the consequences and he flat out said no. I then asked him if this was any other child, neurotypical or not, would they have gotten the same consequence. That must have hit a nerve because he totally lost his cool. It pretty much got ugly on both of our parts - he wanted to bet his house and salary that Logan doesn't have autism because he can talk and make eye contact (yes, this is literally how ignorant this man is), said that Logan is a liar, and will grow up to be a criminal. Even typing these words - in a shortened version - makes me sad and oh so grouchy! Logan has never lied - except for when he was asked if he hit the child - and he said no - and was then asked to tell the truth - and Logan admitted. This guy is scary and intimidating - I know Logan was too scared to tell him right off the bat that he hit. However, he told the truth after his initial reaction (which I think most children would have denied considering the overall meanness of this man).

We took it to the Special Ed Director and the Assistant Superintendent...along with an advocate...that is known for being the BEST in Fort Wayne. They refer to her as the "Pitbull with Lipstick." She did an awesome job of advocating for us and the best interest of Logan.

We have another meeting tomorrow. Redoing the IEP - to include specifics - and to fix all of the things that weren't done properly in the first place. It will probably be long and stressful, but well worth it.

On another note Logan has been having ongoing issues with his muscles - and having pain in his legs, arms, neck, etc. We spent Saturday evening in the ER to have some x-rays done. His spine looks good! No unusual curvatures or anything like that. Tomorrow we have an appointment with an orthopedic specialist to see if he can't find the underlying cause. :)

Today we got Logan's genetic results back - I was so flippin nervous because she and her assistant both came in to the results meeting. We did find out that Logan has a deletion of the HLA-DRB1 gene (one of those gene things in your body that make up who you are). She informed us that there is an association with autism spectrum disorder. I will most definitely be taking that to our meeting with the school just to show them that we have some more concrete evidence....not like it will matter to these crazy "professionals" anyhow, but make me feel better! Ha!

Needless to say, I have been driving myself crazy with researching things to include in Logan's IEP. I don't want to leave anything out!

The countdown to Mexico is on! Can't wait! I will definitely be enjoying a cocktail (or three) on the beach, listening to the waves, and pretending I don't have a worry in the world...even though you KNOW I will be missing my babies like crazy, wondering what they're doing, if they are sleeping well, and missing me (ha!).

Hope you guys had a great Memorial Day weekend! Thanks for stopping by and catching up on our crazy life!

Much Love,
Autumn :)

Happy Mother's Day!

Happy Mother's Day! I am celebrating the amazing gifts God has blessed me with; My sweet girl Emily, my outgoing Hailey Grace, and my love-bug Logan! Each with their own personalities, interests, and passions. If I had been able to pick the perfect child - before I had children - I don't know what qualities I would have chosen. However, I am sure that God gave me just what I needed! They are all three so different, yet so amazing! I don't know that I deserve a day just for me - yet a day to celebrate the joys these sweet children have given me. I am lucky, undeserving, and so, so, so thankful these sweethearts call me "Mommy!"

 

 

 





I am also thankful for my own mom and mother-in-law! I have been blessed with two amazing, beautiful, supportive, encouraging, and loving women! :)

 

Wishing all of my mommy followers and amazing day filled with LOTS of love, hugs, and happiness! Cherish the moments!

Love, Autumn!