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! 

My "100th" Blog with Big News!

I find it hard to believe I have written 100 blogs about my sweet boy! When I started this blog I would never have guessed we would be where we are today, but I love that I can look back and see how far we've come and all of the events that have taken place since I started!

I am pleased to inform you all that Logan was approved for an IEP!!! This is HUGE!!! This is what we have been trying for since the beginning of the school year and after many, many, many meetings and teacher phone calls. I have to give TONS of credit to the special education teacher as she was on Logan's side from the beginning, but we had to have the administrators, school psychometrist, psychologist, etc on board as well...and had to get all of the people on the same page. After those lovely people (who don't know/work with Logan) were able to observe and assess him themselves (and with mention we had been in contact with a lawyer), they seemed to change their tune.

Logan's 504 was put into place at the end of November of 2012. His behavior intervention plan was set. This included using visual prompts, a ticket reward for recognition of good behavior, and getting to pick a prize/positive note with school counselor twice a day (before lunch and at the end of the day) if he remained on green or yellow. While discussing our results of the observations - the school counselor was asked by the school psychometrist how the system had been working and the school counselor shocked us! Her answer was that they had tried it for a couple of weeks and didn't notice it helping him at all and she didn't really "have time" to do this on a daily basis. I think every.single.person in the meetings jaw dropped a little, and ours dropped a lot! I saw the school psychometrist write on her pad of paper "meet with counselor after meeting." The special education teacher also told her that she disagreed with that due to the fact that you cannot change behavior in a matter of two weeks. They were NOT happy with her!!! So not only was his reward system followed for just 2 weeks, she and Logan's teacher never informed any of us that this happened and never set up an alternative positive reinforcement. That made me super GROUCHY! In the "notes" after the meeting where literally everything is documented that is discussed - she conveniently left out that ENTIRE discussion. I kindly spoke up and asked that she add in the notes that she failed to comply with the behavioral support plan that we had all agreed upon. What a crock! Hence the reason we NEVER wanted the 504 to begin with because it is just recommendations. The 504 doesn't have to be followed by law. I am sure she was in quite the awkward position and got in some trouble after the meeting....as she should have!!!

After that nonsense we were told that they had found Logan eligible for services and an IEP would be put into place. We continued on and set up the IEP. The accommodations that will be provided are as follows:

• A timer (to help Logan stay focused on the task and to visually see he is making progress)
• Visual Aides (the special ed teacher will take pictures of Logan and insert them into a program called "boardmaker." This will allow Logan to visually see what comes "next". There will be a series of pictures with Logan reading, writing, doing gym, music, computer, etc. and after each of these things he will flip the card over and know what activity comes next.)
• An iPod with soothing music and headphones for his independent work time
• Small group testing to provide frequent feedback and to keep Logan on task without distractions
• Logan will be in close proximity to an adult during transitions and carpool
• STAR technique will be used to help Logan when he is getting anxious/upset "Stop, Take a deep breath, And Relax"
• "Body Awareness" prompts will be given "find your quiet place" (this technique is used when he is sensory seeking, hyper, etc. Logan places his hands on his belly, closes his eyes, and takes deep breaths allowing him to tune into his body and physically feel himself relax. His PT taught us this and it has worked AWESOME!).
• We will be notified by email or phone anytime Logan has an incident that requires him to go to the office.
• An assistant will be provided daily for the 90 min reading block, 40 min math block, and recess.

I am very happy with what was put into the IEP. Even though it has taken SO LONG, I am thankful that we have finally gotten to this point. They also recommended that we go ahead with the Full Autism Evaluation - because after working with Logan they feel this is appropriate. We have wanted that, but needed the IEP more, so that came secondary. It will be completed within 50 school days - which means it might not happen until next school year. I am okay with this because he is still getting his help through a private OT, PT, and SLP. We are also going back to his neuropsych that we saw a few years ago to get his take on things.

I hope/pray this makes a difference in his schooling - he deserves the BEST!!! :) Thank you for catching up on our latest journey!

Autumn

Life Happens :)

Hope you all had a Happy Easter! Thanks for stopping by and catching up. Life has been super busy - so I haven't gotten to update in over a month!

Our last meeting with the school went okay - We learned that they didn't feel Logan qualified for an educational diagnosis of Autism to receive services. We are still going forth with the IEP in hopes to at least get him OHI...even though you would think a medical diagnosis should be MORE than enough. So frustrating! I did speak with the special ed teacher and she did whisper to us that she is sure he will qualify. Just LOVE that almost his entire Kindergarten year is over with and he is SO far behind. Boo!

Logan was a super-duper-trooper with his nasal surgery last week. We learned that the recovery process would take about 3-4 weeks and were a little concerned. To our surprise he went back to surgery without tears and came out of surgery the same way! The nurses and doctor couldn't even believe it! He never experienced any pain. He never once cried or complained. I discussed this with the Dr and this is probably due to Logan's pain receptors being under active, which we already knew he experiences. With the sensory processing disorder he actually likes the feel of pain - unlike the rest of us.

This week is Spring Break! We were excited to take the kiddos to the Children's Museum on Monday, however after about 15 mins, he had a meltdown and we had to leave. It was super crowded and he was extremely overstimulated. I discussed this with his OT today and she actually volunteered to go with us next time. We have been extremely blessed with awesome therapists who love Logan just as much as we do!

He is doing extra sensory-seeking this week - that has been the only real challenge lately. Lots of jumping, crashing, falling, clapping, slapping, snapping, etc. Loves the feeling of the pressure and gets quite carried away. The high pitched squealing and yelling has increased. I am sure this is all due to change in routine between his surgery and being on Spring Break. We are trying to keep things as even keel as possible for him. 

We are taking it easy for the time being - Logan's sister Hailey has been sick off and on since Friday. We thought she was over it after the weekend, only for her to get sick again last night and this morning.

I am happy to announce that Logan is starting to take showers - HUGE accomplishment! We only have about a 5-10 minute discussion now versus a 45 minute meltdown. I'll take it! :) He is also doing well with the kinesio taping. Toe walking is still there, but decreasing.

I think that is it for now!

Autumn