Apraxia

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    I fear

    Part 1 of 2 I fear…

    Parents have many fears for their children as they grow up…. but as a special needs mother my fears are so different than their’s. It’s difficult to put into words. So here I go….

    It’s hard not to have tears roll down your face at night when everyone is asleep. You weep  because of the unknown, because of how difficult things will be for your child.

    When you look at your child laying in bed asleep, so perfect just thinking how much you love them. How beautiful they are.

    You lay there and think about everything, you can’t turn off you thoughts and fears. Its hard to relax and take a deep breath. Its hard to watch how easy life seems for typical parents. It’s hard hearing typical parents complain that their kids never shut up, its hard watching their kids get to be kids.

    They say children are mean, but adults are worse. Mean disrespectful adults raise mean disrespectful children. Period. I have had many ups and downs since my son’s diagnosis, but I still cry. I cry a lot. Its not a bad thing- it’s ok to cry, I need to feel my feelings. I cant always be the perfect happy positive mother. I’m not superwoman.

    Teach your kids to be kind. Teach them to be cool means nothing as you age but your character means everything in life.

    I was badly bullied in middle school all the way up until my senior year of high school. I was extremely overweight and had thick short hair. I was the ugly duckling at that time in my life.

    Im nearly 40 years old and I’d be lying if I said that it didn’t affect me deep down- I became anorexic, lost over 100 pounds and then struggled with bulimia for many years into my late 20’s.

    I was able to fight back to my bullies- I never just let them tear me apart without a fight. A person who is autistic, whole different story. They don’t operate like us. It makes me feel ill to think about my son being bullied for his differences. I try not to think about this but I also can’t be naïve. You would think those with disabilities would be off limits to bullies yet they are the bullies number one target.
    I fear if he will never speak, and the apraxia of speech will rob him of a voice. I fear if he will ever have friends or a friend… if he will be bullied and harassed his entire existence because he is different.

    I fear me dying….who will love and care for him like I do? I fear someone hurting him or abusing him and he cant tell me. I fear her will never be able to live on his own without help.  I fear he will be lonely and depressed, I fear he will wander off as I read all these stories about autism and wandering.It makes me sad to think I may never be a grandmother- I know he can still find love one day but I have thought that.  It makes me sad that I can’t make this world truly understand autism…the list of fears are endless. Its so hard not to just feel completely helpless some days.

    You then get those people who say “you can not worry about all that now”

    It is hard not to roll my eyes to this, why? Because the average person/parent- you don’t get it- I’m not like you. I’m not a parent to a typical child and when “normal” parents realize this I think they will understand.

    Typical parents may be upset for their child over them loosing a hockey or baseball game, they may be upset over their kid not making the football team… none of that matters to me. Sorry. I get upset over the things we can all do that my son with Autism and Apraxia can’t do. The things you would never think of because it comes so naturally to us. This is why I now view the world differently and take nothing for granted- if Autism wasn’t a part of our lives I would be just like the typical parents.

    As a special needs parent you kind of feel like you don’t belong.. you’re not like the average parent and sometimes special needs parents don’t accept you either as they think you you may not have it hard enough. I feel that.

    Our son may not have severe autism but he has autism. It doesn’t matter where you fall on the spectrum. Autism is Autism. It is not easy. I am not in a competition to see who’s child has it harder.

    I have learned a lot following a particular special needs mother. She call’s it “the secret world of autism”…..

    Reading her stories are so inspiring. She seems so kind, accepting, honest, calm, raw and welcoming of all in the special needs world. Her page and videos have helped me more than anything these last seven months since my son’s diagnosis.

    Shes made me realize to celebrate the little things our kids do and not to worry about the text book milestones, that kids with Autism go at their

    Question

    My son has ADHD, below average motor skills development, and could have childhood apraxia of speech. Should we consider dyspraxia?

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    Heavy

    Tonight, my heart is heavy.

    This feeling just sits there. It just sits, like a dark shadow, in my stomach. I can’t name it, only feel it.

    And it doesn’t feel nice.

    Insurance. Doctors. Therapies. Advocating. Forms. Worrying.

    How is there supposed to be room for cooking? Cleaning? Fixing?

    Self care? Ha. I’m lucky to have time to shower.

    It’s midnight. And, tonight, I’m heavy with a burden no one should have to carry.

    #medicalmom #Rare #PID #HealthInsurance #Apraxia #AirwayDisorder #chronic

    Post

    Sometimes I hate language #Autism #CommunicationDisorder #AugmentativeAndAlternativeCommunication #LanguageDisorder

    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.