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Hi, my name is Jneal. I'm here because
Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.
I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration
I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.
#CommunicationDisorders #Disability #InvisibleDisability #LanguageDisorder #AuditoryProcessingDisorder #CentralAuditoryProcessingDisorder just needed to vent at how complicated and exhausting, and diificult language processing is! After a handfull of years of low stress and minimal demands on me from the world, where I got lulled into believing I could rely on my brain and body to mostly cooperate whenever I asked them to do stuff, (for the first time in my life) life has started to remind me otherwise! Today it was watching part of an online comiccon-type thing. Yes I figured out how to turn on the captioning, and even fix the size when it suddenly shrank to infestesimal. But OMG! People, when you are authors or publishers giving panel talks, a little pre-preparation and language organization are called for! Even skipping around to only the important parts, and muting half of what I did listen to, wore me put so much that I needed to lay down in the dark and turn my music on for an hour before I could do anything else today!!! The fact that almost everyone had a British or Australian accent didn't help either, but that's more of a me problem. Accents are really hard for me to decipher due to my auditory processing difficulties.
Not many people know about #Merld (mixed expressive-receptive language disorder). Most that get this diagnosis are ones going into the ER with #swhile ,everehesdtrauma. While there are some, 6%, whom are #bornwithit ... like my son.
I had a hard pregnancy... not just because of my son's stubbornness. I was engaged for 3 years... and had things going okay. Then, we started fighting a ton. I was ready to end the relationship, when I found out I was pregnant. During this time, my treatment from my fiancé started getting worse. I had panic attacks... I was pushed, punched... I was in a fight for me and my unborn child. I had never been hit until now. I often wonder... if this is what caused my son's issues he has. I know some are genetic... but I wonder about the Merld one with this the most, as it is the fontal lobe that is affected and causes these issues.
I new when my son was young that he had something going on. he would get anger bursts as a baby. He was evaluated at age 5 by the U of M for Autism. He was denied... with videos of his outbursts and all his delays. It was $150 out of pocket and I was a struggling single mom. I was working 2 to 3 jobs at the time.
I was told my son's issues were caused by me from relatives. I was given crazy looks from teachers. However, I kept fighting for my son, as his proper education is important to me. I knew how hard being different growing up is. I also grew up around my special cousins. I knew that something inside my son was not connecting
My son was diagnosed at 5 years old with ADHD and MERLD at Lifeways in our home town. He was seen there from 2010 until 2017.
As he has grown, he has gotten more issue that we have seen and brought attention to. ASD tendencies (He is still high functioning for this and doesn't meet enough markers for an official diagnosis... limiting the help he is eligible for.), mild dyslexia, Generalized Anxiety, ODD, Sensory issues, Sleep apnea, Raynaud's Syndrome (https://draxe.com/health/raynauds-syndrome/ )....
Some of these issues he will grow out of like his sleep apnea... and hopefully his Raynaud's Syndrome. He was recently told he no longer needs his sleep apnea machine (c-pap). I am hoping that his Raynaud's will be the same. If not... he has circulation socks and gloves.
So up to this current day... Our freshman son reads above this district's average (thanks to a k12.com school - MGLVA that helped him in 4th grade). He still has some dyslexic issues in Math. History this year was horrible for him and it is his favorite subject.
I will always be an advocate for m children. I have one rule... that they try their hardest to learn and do their best. I will not help unless they have not tried first. I refuse to do the work for them.
I have thought about doing a blog for my MERLD ... but, I have no clue about blogs. I think it would not only help others, but my Merld son. Any suggestions on the blog?
I have struggled with high functioning depression since I was a teenager. That awkward time is bad enough. I went through my mom getting divorced at this time and forcing me to move out of state. I was tricked into believing it was just a simple trip to spend time with my cousin down in Texas. My mom used something I longed for as a way to get her way. I was tricked and very mad and mean to all for a whole year.
During this time… I lost a friend of mine. Two weeks after I moved, my friend shot herself. I found out after the fact through a friend back home. I was in tears. I was in disbelief. We connected, not because we were popular… but, come to find out we had similar struggles. We both struggled with depression. She was popular and super sweet… sticking up to people picking on me. I was one who was struggling to fit in somewhere and be accepted, something that I would not care about later in life. We were 14 years old.
My depression worsened. I became more hallow and dark. Doing a few things out of my normal character… not caring if I got caught for doing things like skipping school… or not being at the community center where my mom had dropped me off at. I was a student who babysat and got A’s and B’s in school. I was not wanting to be away from all I knew and the loss of my friend was something I though … if I was there… it would not of happened.
One day, It was all to much. Drama with the friends I had met was occurring and I snapped. The darkness took over. I tried to end my life. The attempt was stopped by my boyfriend at the time. He got the object out of my hand and restrained me until I was calm again. (This is where my belief of everything happens for a reason began to take action.)
The next year was better and I felt like things were progressing. I had friends from the bus and enjoyed my classes. I was in Art, Floriculture classes, and had a boyfriend who lived with us. My boyfriend helped convince my mom to let me go through modeling class. It seemed like all was getting better.
This was short lived. My mom decided we were moving back to our home state. So, all opportunities I had lined up for jobs or anything else would be lost. My boyfriend that was 19 was to scared of the unknown to move with us, as we had planned. So, again… the sadness was setting in.
The city were moved to was one unknown to me either. I knew no one. I hated moving. I was 17 at this point. I felt numb… sad and emotionless. We lived in this city for the next 2 years of my school career. I tried hard to fit in and find things I like to do. Things like Art, English, broadcasting, chior… I even tried out for the pom-squad after talking to the leader in a dance class. Growing up with the mom I had was not easy, as she was very uneducated about much and it just made things worse most of the time. My mom believed one makes themselves depressed. Because of this… I could not tell you what learning issues I had or if there was any mental health that needed treated. I know there is from self education.
When I had my oldest son at barely 20 years old… There was more abuse during this time from my then fiancé. I left him and started trying harder. I became more optimistic because my son was my reason to keep going. I have survived mental, emotional, and physical abuse… even survived being rapped in high school. Anything worth doing was worth it for my son. I was all he had and I was going to do all the hard work I could to make his life better. My goal was to give him a better life than I had… to give him more support. I didn’t want him to want to run away or harm himself like I did in my younger years. Anything worth something is nothing easy to do.
I have struggled being a single mom with a son born with mixed expressive-receptive language disorder… and that was just the start. I still have depression… I just have hidden it because my children come first, always. I may make mistakes, but I talk to my kids and apologize, telling them I will try to do better from now on. Every day I try to be better than I was the day before.
I still feel like no one understands me. I am a mystery to many. My best friend is the only one who has ever come close to understanding without judging. Everyone has their own journeys and struggles that is unique to them. No one else is really meant to fully understand. I know this in my 30’s and I am still unsure that a teen would completely get it. My now 15 year old has a ton more on his plate and I am not sure when I tell him this… he even really gets it, I can only hope. My children are far more sensitive to things than I ever was and it worries me as I know myself how drastic things can get. I ma made out to be the bad guy, when all I am trying to do is help, because I actually know many of these same feelings. The feeling of a black sheep in school and the family. The feeling of being unwanted by a parent or relative. It can all be overwhelming.
I am still trying to function as an adult with 4 boys in the home and a veteran husband. each of us have our own issues and sometimes… it seems like there is no solution but a bad one. I just try to take things 1 day at a time. Some days are far better than others. I still feel very empty and lost on most days. it is a struggle I truly don’t completely understand… but, I have come to far now to give up.
Learn to pronounce
language disorder marked by deficiency in the generation of speech, and sometimes also in its comprehension, due to brain disease or damage.
According to Agrien: The event which causes one to replace an entire university level vocabulary with 4-letter words... while the throat closed in and swallowing is a new support event. 🙄
What do you do when you lose your ability to speak? Especially in public, this can be an issue for others. I, myself, long left the idea of worrying about what people think. 😂
When you learn you are pregnant, in particular with your first, you get the books that tell you all about the upcoming pregnancy and the first few months of motherhood. You plan, work, scrap, save and nest all in an effort to create some semblance of order in eager anticipation of the impeding chaos of “new parent.” While all of the the uncertainty of being a new parent can be unsettling, there is some sense of comfort in knowing that others have done this same thing. In fact, often turning to those we deemed “more knowledge” for guidance when feelings of inadequacy sneak in to cloud one’s confidence.
So after several years as a small family of three we decided to expand. We knew we wanted to have one of each. Seems easy enough right? So, we became a family of four, expecting our experiences to be the same as all those other parents that had also decided to make their families larger. We did all the things we were supposed to. We had extra blood work and a noninvasive prenatal screening done to tell us our risks for congenital defects. We knew that I had a negative blood type so we took the rhogam shot when I began spotting early in the second trimester. I took prenatal vitamins and iron supplements. We thought that everything had an answer.
Quickly our lives were changing catapulting us into the “sandwich” generation. The indicators had begun several years prior as Sandy began to fall into poor health. Yet with that said, we didn’t recognize the severity of the situation. We continued to fight and find treatments that had been pursued by others with success. So Rich took on the role of managing his mother’s health and I stayed with Charlie in the hospital. While Charlie’s case of septicemia and hypothermia at six days old was challenging, difficult for our entire family, even that had a set protocol in place for the doctors and nurses follow. These scenarios all with prescriptive, predictable treatments that contained mantras of “moving forward.” It was as if everyone was following some intangible assembly manual that contained instructions on what to do next.
What isn’t written is how to recover, how to “move forward” when you are missing parts of your family. Or how to raise a child with global developmental delay, hypotonia, a variant of uncertain significance, oral motor dysphasia and mixed expressive receptive language disorder. There is no set therapeutic regimen to follow, no guide manual or picture instructions on how to take care of your parents while caring for your child. It is some assembly required with this atypical sandwich generation family.
As we “move forward” it is impossible not to look back with regret. Impossible not to compare our child to others. Or wonder what the future holds for the family we have that remains. I am just winging it, making it up as I go. Trying to put together a plan for my family with huge pieces of the puzzle missing and no box with a picture at which to look. My efforts are drawn out. They are disparate, scattered because there are so many irons in the fire, so many therapies to do, always someone needing help.
My family isn’t typical, nor are our experiences. My son is disabled, so is my mother. Each day we move forward with a plan in mind only to change direction, bending and flexing because a location isn’t accessible, or lacks an adult sized changing space. So I change my son on dirty bathroom floors, on the ground in public spaces or my car because I have no other option. I pack a cooler for mashed and pureed food carrying it everywhere because Charlie can’t eat off a menu like other kids do.
No, my family, our life, it isn’t typical. We are a “some assembly required” family. Yet, while we don’t have any instruction manual, our diffused efforts are paying off. While sandwiched, caring for multiple generations both Charlie and mom are learning to walk. And when I am curled up next to my daughter in her bed, I know we are doing something right as she shares her deepest fears so we can role play helping control her anxiety. It is as Charlie bunny hops over to me, pulling to stand independently that I realize my sandwiched family is writing our own assembly manual and it is okay if it takes a little extra time because there isn’t a guidebook on how to do this.
October 18th is Developmental Language Disorder Awareness Day. While DLD is recognized in Eurpope, it is not as widely recognized in the United States. I am hoping to change that. Below is my story.
My son Curt met all his developmental goals with the exception of speech development. The day my husband and I were given the report back from the speech therapist about our son’s language delay was one of the worst days in my life. No special needs parent forgets how their first time receiving a report about their child. I remember hearing the therapist talk to us, but I wasn’t listening because my heart was somewhere in the pits of my stomach, completely broken. It took days for me to shake it off. I had a 2 ½ year old son and a 1 year old daughter who needed me and I needed to snap out of it and work out a plan for the parent I wanted to be. So I wrote this down in my planner.
Problem: Curt is not talking
Try everything! Talk to Curt all the time, even when you think he’s not listening. Teach him about things while I am driving. Count street lights. (He liked street lights and trains)
Do research. Do not ever let another doctor or therapist accuse you of not doing something. Be the smartest parent they ever met.
I am driving this bus, not the therapist, doctors or teachers. They are part of our team, but I am the driver. I can do this!
I remember clear as day when the local school district diagnostician came to my home to tell me she thought my child had Aspergers and then later told me she didn’t think I played with him enough. She asked, “Do you get on the floor on your knees and play with him?” Did I? I thought I did, but could not remember so clearly anymore. I felt like I was hit by a load of rocks. Why does the mother always get the blame? I was furious.
After she left, I went online and looked up Aspergers. It didn’t sound like my son. Aspergers kids tend to talk on time. My son wasn’t really talking. He had maybe 15 words total and many of those were in a language he made up. So she was 100% wrong on Aspergers. Did I play with him enough? Nothing feels like enough when you feel like a parental failure. (Which I wasn’t by the way, but good luck trying to tell me that 12 years ago.)
I went to the Gap for a little emotional therapy shopping and bought a new pair of blue jeans. These jeans and I had a plan. I was going to wear them every single time I got on the floor to play with my son. They weren’t just my “Mommy jeans,” they were the symbol of my relationship with my Developmental Language Disorder. Curt had deficits in both expressive and receptive language and it was overwhelming. He was in the 2nd percentile for his age. But I could see he wanted to learn and communicate.
Curt and I started at the train table, playing with Thomas the Train everyday. We practiced playing with toys back and forth. I would talk and model questions and answers. I really wanted him to be able to ask for water and tell me when he was hungry. So we spent a lot of time in the kitchen modeling sign language along with spoken words for water, eat, more, etc.
I didn’t look at speech goals and let them overwhelm me. I made my own speech goals depending on what was best for him and the things he found frustrating. If I could ease his frustration more growth would happen and it would happen faster. I told the Speech therapist, “Okay for the next month we are going to work on personal exchanges where he needs to ask for things he needs and we need to model the exchange a few times. Don’t frustrate him at all. Just model and repeat, model repeat and then give him the item. He will catch on!” We started with water, then moved to food, toys, and then things he was interested in. I managed to work in reading site word, shape names, colors, and the abc’s. One of his first words was Frapachino. Guilty as charged, let’s just say Starbucks got me through some tough days.
I would count street light poles on the way to speech therapy. Then one day out of the blue he started counting with me. I broke down and cried. I had been waiting for that milestone forever. It meant that every time I talked to myself like a crazy lady in the car was all worth it. In the beginning, one goal took about two months and then after a year, goals took about two weeks.
Six months after I bought my jeans I noticed they were faded at the knees. Two months later the knees ripped. I wore those torn up jeans till Curt’s next speech evaluation. While his speech therapist was reviewing his growth over the last year, I couldn’t help but reflect on my own growth and the holes in the knees of my jeans. Those holes meant something to me. I earned them!
I bought a new pair of jeans soon afterward and I repeated this six more times. I have kept most of the holey jeans. They have become my trophies for each set of milestones met. I always tell newer DLD Moms to go buy a new pair of jeans, get on the floor and play with their son or daughter. Enjoy your child and try to have the best time putting holes in the knees of those jeans.