Has anyone ever made you so mad, more mad than you ever thought someone could make you, that you just shut down?  That’s our autism.

Has anyone ever followed you around to the point you just want to scream?  That’s our autism.

Has anyone ever asked you the same question, 20 times, in a matter of minutes?  (One that they know the answer to) That’s our autism.

Has anyone ever asked you that same question, 2 hours later? (20 more times) That’s our autism.

Has anyone ever avoided ANY task that requires some thought, effort, etc.?  That’s our PDD-NOS. (even with a chart)

Have you ever had someone ask if it is going to rain, thunder or lightening (100 times or more) when the clouds slightly get dark (and not believe you)?  That’s our anxiety disorder.

Has anyone cried, in your house, because they couldn’t get the third slurpee of the day?  (Because it truly is the only thing they love) That’s our PDD-NOS.

Have you ever had your child ask for a snack, just after a meal, and then again in 10 minutes, and then again in 20 minutes?  That’s our PDD-NOS

Have you ever changed your child’s bedding for the 4th time that day?  That’s our autism.

Have you ever cried because their future is uncertain?  That’s our PDD-NOS, Autism, and Emotional Impairment.

Have you ever felt sadness as your child watches his/her sibling get to do things that typical teenagers do…and she doesn’t?  That’s our PDD-NOS.

Have you ever found 38 water bottles in your child’s room, even though all of them are still full? (and mopped up the 3rd spill of water that day) That’s our autism.

Have you ever laughed so hard your stomach hurts because your kid genuinely has funny things to say?  That’s our autism.

Have you ever caught your child sneaking food in the middle of the night, even though they claim to not know the code to the lock?  And, then have them scream at you and try to wake everyone up because they didn’t get what they wanted?  That’s our autism.

Have you ever closed all the drawers in their bedroom dressers, for the 5th time that day, because they changed their clothes again?  That’s our sensory issues.

Have you ever had your child call you the worst parent ever and tell you to leave them alone? But, then follow you around. That’s our autism.

Have you ever wondered what part of one day in our lives is like?

That’s our Autism, or PDD-NOS, emotional impairment and anxiety disorder.

I talk to myself.  Sometimes, it’s out loud and sometimes it’s to myself.  Lately, I have noticed that Phoebe will now anticipate my thoughts and say them.  There are times she even says things she WANTS me to say.  I’m sure she has been doing this for a long time, but recently it has become more evident.  (I’m that predictable). Have you ever stood up in your own house and indicated…”Well, I think I’ll get a drink (or go to the bathroom, or do some laundry, etc)?” I stand in my house and Phoebe will say, “Getting a drink, huh?”  Or, she will say, “Bathroom break?”  I’m living my life with closed captioning.

I am reminded that the team of doctors at Yale told me that she gets ALL her information from me.  At the time, I was her only source of info, but now she spends time with a caregiver, at daycare, and at school.  Her sources have multiplied.  She has learned a lot more phrases and behaviors, yet still can use them in the wrong and right situations or just randomly.  Her verbal ability to tell you, “I KNOW!”, yet continue the inappropriate behavior makes people wonder what is wrong with her.  (Even me sometimes).  When we are home for summer, it begins to wear on me, and I become so thankful for the time that I have alone.  (and so much more thankful for her teachers).  The unpredictability of schedule in the summer does us both in.   I get angry with her, and she with me.

When Phoebe was little, her schedule was easy to vary because she was pliable.  She would shop, go to movies, etc.  Now, most of those things cause anxiety.  Phoebe realizes now that most adults her age do these things, so she will attempt them over and over again even if it causes her anxiety and meltdowns  (with a sitter or myself).   She is taking in information at all times by watching and mimicking myself and others.  She will say, “when I go to college”, or “when I live by myself”, or “lets go shopping mom and look at clothes,”   We try these things hoping that she will have made a miraculous recovery, however I am HARSHLY reminded that this is not how it works.   Phoebe sees and hears what 20-year-olds should/could be doing.  She wants that, and knows she can’t and won’t (in some ways).

I will continue to talk to myself, and Phoebe will continue to mimic my behaviors and language (and others as well).   I don’t anticipate this changing anytime soon.  I will try to not let it bother me as much as it has, and I will continue to try and model the correct behaviors for her (as hard as that is at my age).

I have to remember where she started from and how truly far she has come.

This house has had a ton of changes.  We have a brother, who comes and goes as he wants, has a girlfriend, and takes care of himself (mostly) and doesn’t answer to his sister.  We have Mom with a new job.  Changes don’t always go over well, and we have had to adjust to these as a family.  Brendan and I adjust well, and Phoebe does her usual meltdown, have a bad day, and cause chaos for everyone/ everything.  Phoebe turned 20 in March, and I had to change too.  Every year since she was 6, she does great in the beginning of the school year, and has a horrible end to the year. There is no rhyme or reason, only that it happens every year.  I hold my breath and think EVERY YEAR, “THIS YEAR IS GOING TO BE DIFFERENT!!”  Um…no.  It doesn’t happen.  Again this year, we have some challenging behaviors going on at her post-secondary program.  And again, we have a phenomenal teacher/school/principal who understand Phoebe, and truly want what is best for her.  Her teacher opened my eyes yet again, when she texted me this week and said, “I just want Phoebe to have a good time at school and do what she likes.”  Wait, what?  This has become and eye-opening moment in so many ways.

Phoebe is a 20-year-old adult (sort-of).  Most 20-year-olds either go to college or work, or live on their own.  (I know…MOST)  For the better part of 20 years, I have been going crazy over her school experiences.  I am over-involved and doing everything I can to get her to learn new things, and do what is expected of her.  At her program, the classes are geared toward job skills and personal skills, etc.  She does well with most of her classes, and only a few have brought out certain behaviors.  I would love to tell you why.  Phoebe can’t even tell me why she throws herself on the floor, calls people names, screams, refuses to work, or sleeps during class.  You can ask her 10 times and get 10 different answers.  She truly doesn’t know.  She only knows she doesn’t like it.  These are her coping skills.

Her teacher, principal and staff are AMAZING people.  Only the strong can do this job. They have seen it all, and deal with it with kindness and compassion.  They care about Phoebe and want her to enjoy these years at the program.  When her teacher sent me the text that Phoebe should love her experience, and she is showing us in so many ways that she is unhappy in one class, it was truly a changing moment.  Happy?  What is that??  I have been so focused on everything else I forgot that she is an adult woman who deserves to be happy.  Her teacher is looking at other classes and said, we will keep trying until we find one SHE likes.  (Not us)  Wow…just wow.  We aren’t making her chose something she doesn’t love?  That’s a shift in dynamics.  She gets to choose.  She chooses her path.

Just like any other adult.

As I come upon Phoebe’s 20th birthday, I can’t help think about our lives since that day in March of 1999. Everything about Phoebe was a-typical when she finally came in to the world.  A C-section because she didn’t want to come out (shocker), lung issues, breathing issues, etc. etc.  That was just the start.  I was so relieved when she got to about 3-years-old and her asthma was basically gone, and was told she had grown out of it.  It had been 3 solid years of doctors appointments, and numerous surgeries.  I thought, “Great…now she will be normal.”  How wrong I was.  Nothing has been “normal” since she was born.  It’s been 20 years of meetings, appointments, evaluations, surgeries, and comparisons to “typical” developing children.

In the early years, seeing babies doing all the things that typically developing children do was heart-wrenching.  Why wasn’t my baby doing these things?   Why isn’t my toddler talking like the other toddlers?  Why is her speech different?  Why isn’t my toddler walking like others?  The list is endless.  It broke my heart to realize that my child would not do the same things the others did.  It broke my heart to realize that my child was different.

In the last few years, I do not feel the same way.  I do not compare. Raising Phoebe has been a challenge, but it’s also been eye-opening.  Most people conform to a set social standard…because we have social “rules.”  Phoebe’s type of autism does not let her do this.  (as do many forms).  She does not worry about things she says or does.  She does not hold back when she has a feeling.  She can’t.  People will stare, and judge because she doesn’t look different…but she acts different.  I used to be so embarrassed, and sad.  Over the years, I have learned to let it go.  I can’t change it, and she has come a long, long way.  I have learned what a behavior for attention is, and what true autism is (only in Phoebe).  I know when she can or can’t do things.  I have also learned that everyone has different abilities.  We ALL have strengths and weaknesses.  Phoebe is no different.

It’s March of 2019.  20-years of being a mother.  20-years of worrying, and persevering.  20-years of challenges and growth.  While she’s not in college, working or dating…she is going to her post-secondary school program, drinking slurpees, playing with her 2000 markers, carrying around her naked American girl doll, and bothering her brother.   Some things may never change, and that’s ok.

Happy 20th Birthday to the little girl who made me a Mom. 🙂  Love you, Phoebe Louise.

Lately, there are heavy things weighing on my mind.  I’m sure most parents of Special-needs children feel this same weight.  What will happen when I am gone?  Where will my child go, and who will take care of her?  In our state, I have not found many places that I find suitable for someone like Phoebe.  Phoebe will not be able to live on her own.  She will need assistance the rest of her life, and I won’t be here to do that.  There are places for developmentally disabled adults, but I am not sure they are a good fit for her.  Phoebe has made great strides in the last year, and is becoming more independent, but she will always need guidance.  In the near future, finding her a SAFE, suitable place to live, or a livable situation is my new mission.  I won’t live forever, and I need to get a plan in place.

I am coming up on 50-years-old.  (gulp)  Twenty-years of taking care of a child/adult with a disability is taking its toll.  I am exhausted most of the time.  I work, take care of her needs, my needs, and my sons needs (and he is a huge help).  I have leaned on many people over the years to help me, but for the most part this has been a 24/7 job. I have missed out on things, and sacrificed a lot to do this job.  I wouldn’t change it, but there comes a time when putting myself first should happen.  I am not sure it ever will, but I think I have to give it a try.  I have aspirations for my career, my life, and most of those are on hold as I figure out all of this.  I appreciate the small breaks I get, and they rejuvenate me in small doses.  (I have to thank those that help me do so)  Phoebe deserves a life of happiness, and independence. I’m not sure living with her mother for the rest of her life, would give her that.  She wants and deserves typical friendships, relationships, and fun.  Don’t we all?

We have a long way to go, but I hope to make safe housing for people like Phoebe.  People who deserve a life of their own, the help they need, and the friendships they so desperately want.  A place that would teach her about nutrition and keep her safe, and healthy.  The research starts now, and I am working on a plan.  With autism rates at 1 in 59 children in the U.S., this is going to become a huge issue for lots of families.  (I’m sure it already is!) These children grow up, and then what?

I can’t be the only parent thinking of this.  If you want to talk, or get involved…please let me know.  I can’t do this alone.   I’m ready to take on this mission.  Phoebe deserves that. (And, so do I)

There are days I don’t want to make any more decisions.  I don’t want to have to decide whether it’s worth getting a babysitter or not (for the last 19 years…19 YEARS!), or what time I should wake someone up, or what to make for dinner for the millionth time, or even decide what to wear.  It’s exhausting to make decisions for myself, and then have to make them for someone else.  This is a natural thing when your babies are little.  We become masters of decision-making for others.  What’s best for our toddlers to eat, wear or see on television.  Easy stuff.  When these special-needs kids become adults, how do we handle this?

I make decisions for 2 people on a constant basis. I wake up and decide what time is best to wake her up, and get her ready.  I decide what options to give her for clothing, and what she should or should NOT eat for breakfast.  (NO…pickles and some cheese is not a good breakfast).  I decide if letting her wear flip-flops when it’s 25 degrees out, is a fight I want to endure at 6:30 a.m.  I decide if I should get ready right away, or wait until she leaves, so I can monitor what she tries to take with her.  No, a bag of crayons and 2 notebooks is probably not a good idea.  No, your doll, an iPod, a deck of cards, a shoe and a marker is ALSO not a good idea to take.  (We are finally over the taking of candy for “Halloween” phase)  I decide if I want to stop at the store on the way home to get her prescriptions and take her in, or wait until I’m alone so I don’t have to buy $50 worth of extra stuff to keep her happy.  I decide if I want to argue about have a sandwich for dinner, or making her eat what I make.  After 8-9 hours at work, and trying to get organized…most of the time I cave and let her have a sandwich.  Even though she has had a sandwich for dinner the last 800 nights in a row.  I have guided, and modeled for her since she was born.  With her type of disability…I have found out, it’s a constant thing.  Some things get through, and some things do not.  These decisions that I make will never end.

These small decisions may seem small to you, however I’m already making huge decisions about what her future may hold.  I have to plan for what happens when I’m gone, and what will be best for her.   These are big decisions.  Whose burden will that be?  Who will make the decisions for her then?

All big questions that require a lot of thought…and decisions.

No one loves your children like you do.  NO ONE.

For the past year, my daughter has had a new caregiver.  I found her on a website, and then hired her as a Community Mental Health Respite worker for Phoebe.  She goes to a local college and is one of the most amazing young ladies we have ever met.  This young woman has made a huge impact on our family.  I did not expect this, or think our lives would change as much as they did.  She has been the one thing Phoebe needed.

Our family sacrifices many things to accommodate Phoebe.  We don’t do many things that could possibly cause more anxiety in her.  We have missed graduation parties, birthday parties, family outings, trips up north, movies, dinners out, parades, football games, soccer games, etc.  Phoebe can’t handle a lot of stimuli at once, and this will often cause her to have large outbursts.  We have tried many times to push her limits, and we pay the price.  It’s just easier to stay home.  It just is.  Getting a sitter is expensive, stressful and sometimes I just don’t want to.  I don’t mind anymore…I know this is what is best.

This was our norm until this past year.  Our caregiver started by treating Phoebe as an equal.  She was her caregiver, her companion, and most importantly, her friend. She began taking her on little outings.  She would take her shopping, or to the Cider Mill.  Phoebe did amazingly well.  I warned her of the outbursts, and there were some.  (this isn’t a movie you know;)  Our caregiver knew how to read the signs of too much for Phoebe, however she was able to push her farther than most.  The outings started become more frequent.  She took Phoebe to dinners, games, zoo trips and even took her to the Special Needs Prom we have here in town.  This awesome caregiver even stayed with Phoebe for almost a week when we took a vacation.  Phoebe LOVED it. (I did get a few calls with tears)  Today, Phoebe and this young lady went to get some school clothes, went to dinner and the local arcade, and then grocery shopping with a list.  They were gone for hours!! (this never happens)

I am so proud of Phoebe for stepping outside her comfort zone and doing these things that can cause such stress.  She is taking little steps to become a more independent young woman.  I thank my caregiver daily for making Phoebe a better person. (even if she says the most inappropriate things ever)

While I know she may never be able to live and do things alone, she is making big strides to becoming an active member of society.

Without me.

This year, I will be 48 years-old.  As a woman in her mid-life, I would have expected certain things to be happening.  I realize life always throws curve balls, and we deal with it as best as possible, but there are some things I saw as the norm.  As a young adult, this is not at all what I had pictured.  We have dreams and expectations, and we set out to accomplish these things.   My first choice was to be married young, and to get my Fine Arts degree in Studio Art from Michigan State University.  I loved art, and it came easy to me.  I accomplished that goal.  Next, I planned on being a stay-at-home mom.  That was the “plan.”  I would work as long as I could, and then have my babies and stay home.  My husband was on board, and that was the goal.  I also accomplished that goal, for a time.  I stopped working when Phoebe was born, and I am very glad I did.  I am not sure I could have worked and taken care of her needs.  After Brendan came along, I also stayed-at-home until he was 3-years-old.  All these goals were accomplished, and I had done what was expected.

My life took a sudden detour at that time, when my husband left me, I had to move, find work, and take care of these children on my own.  (that’s another story) My father was gracious enough to employ me for a time, so I could get back on my feet after not having worked in close to 8 years.  I was not doing design, but I was working and earning money.  I can’t say I loved it, but I had to do it. It wasn’t part of the plan, and there were times I laid on the floor and sobbed.  Phoebe’s formal diagnosis came around this time, and there were meetings, appointments and realizations that life was becoming even more unpredictable.  This was most definitely NOT part of the plan.  I did everything right!!?  I did everything in the “correct” order!  I went to college, got married, worked, got a dog, had babies, stayed home, etc.  The mourning of what was came hard and fast.  I felt lost and scared for the first few years I lived in Saginaw.  My thoughts were always, “this can’t REALLY be my life can it?”

Fast forward 13 years.  I still live in Saginaw, and I still have moments of wonder.  I still cry at times and wonder how I am going to accomplish anything.   I STILL miss social things because I need a babysitter to watch her if I want to do anything.  (ANYTHING) I still feel lonely.  I changed my life/goals to fit her disability.  I had no choice but to put on my big girl pants and get to work. I changed my plan, my goals and my life, because she is my daughter.  She is my responsibility.  I became a single mom, who went back to college to get her teaching degree, so I could be home with my daughter in the summer.  This is what works, and I love what I do, both at work and home (mostly).

I will continue to change my life and goals, so that my children will thrive.  This is where I am at 48-years-old.  It’s not where I expected, but it “is what it is”, as my dad would say.  It may not be in the plan, or the expectation, but I don’t think you would do any differently.

For tonight, I’ll take a breath and count to 10, so I can survive tomorrow.

(As I write this, Phoebe came out and asked, “whats our plan for tomorrow?”) Sigh. 🙂

For my 19-year-old daughter, relationships are hard.  She has gone through years of therapy to help this, but her brain is wired a certain way.  Her autism is interesting and stressful.  My whole family has learned what her “scripts” are.  She asks certain questions, and we give the right answers.  We have learned not to vary much, because then the question cycle begins again until she gets the answer she wants or expects.  She has also learned that getting people to laugh, however she can get them to, is also a good way to get attention.  This can be stressful when new people, or people other than family are around.  Phoebe has learned to say inappropriate things, swear, and say mean things to get a laugh or to just plain get attention.  She is a 19-year-old body with a 7-year-old autistic brain.  We go over and over the appropriateness of these statements…yet it hasn’t seemed to help.

The discussion today with my son was about this subject.  I was enlightened to talk to someone who actually hears what normal teens say.  He informed me that Phoebe’s communication was very similar to what he hears in others, just not at the right time.  We laughed at her ability to say these things when she should NOT, and how perfectly timed those were.  She says things we think, but we keep to ourselves.  We have a very open family, and don’t keep much in. His idea was to write down times when it was ok, and times when it was not.  This lead me to thinking about a social story or two.  Maybe I’ve been going at this all wrong.  I can’t squash all the teenager-ness in her.  I have to give her some control.  (along with some big consequences when it’s not a good time)

We also discussed how it made my son feel very uncomfortable.  The fact that she says whatever she wants, when she wants is unsettling to him (and to me).  It’s like having a toddler around at all times. She wants the attention, and she will get it how she can.  (Appropriate or not.)  I had to explain anxiety to him and how her world is full of anxiety.  She says things to bully us in to doing what she wants, because her anxiety goes in to overload when she doesn’t know what is coming, or if she can control it.  He didn’t really know this.  He nodded, and took it in.  I forget he is the younger brother.

At the end of the ride, I told him the good news was that he would soon be old enough to go to college and leave.  He would have his own life, and this would be something he didn’t have to worry about.  His response was, “yeah, but you will Mom.”

Yep.  You’re right.  (Don’t tell him I said that)

Today is World Autism Awareness Day.  My son and I giggled as I said it.  He replied, “EVERY DAY is autism day at our house, Mom.”  It’s so true.  While I want more studies and awareness about PDD-NOS/autism, what I truly want is more understanding and support for families dealing with it.  We have a staggering amount of children on the autism spectrum who are going to grow up.  Then what?  For me, I don’t see a single solution that has a great outcome.  I have a 19-year-old daughter who will need housing and care for the rest of her life.  She can’t be alone, and she can’t take care of herself.  She is fairly independent in some ways, and totally dependent in others.  What I wouldn’t give to have her off at college enjoying being a young adult.  However, this is my reality and I have to plan for the future.

My son deserves a “normal” adulthood.  I can’t put his sister on him, and his future family.  I’m sure he will be involved in her decisions, but having her live with him is something I WON’T do.  I just won’t.  He has lived with this since birth, and when the time comes…he needs to go and live his own life.  Recently, my son and I went on a short vacation to visit my mom, and it was awesome to have him alone.  It’s another reminder of what having a normal teenager is like.  He’s independent, funny, social, and I am taking it all in.  When Phoebe is around, I am on at all times. I am teacher and parent. I can’t let my guard down or stuff happens.

Another option is that Phoebe can live with me until I can no longer take care of her.  This is what any mother would/should do.   However, what kind of life does that leave for me?  I am 47-years-old, and I have given up a lot of things to be her rock.  I have turned down dinners, outings, and events, left early and cried my way home.  Sometimes getting a sitter can be too hard on everyone…it’s just easier to be home.  I cater to her autism, I don’t have a choice.  The more I used to fight it, and try to change her…the worse our lives became.  It wasn’t something I could battle with.  In this family, we have all learned to understand even if we have to roll our eyes, and laugh hysterically once in a while.  Phoebe wants to live with me right now, but as she gets older I see her gaining a little independence.  I see that she wants a social life without me around.  She loves her caretaker more than life, and wants her over all the time. If I don’t watch, she texts her at least 10-15 messages in a moment. She’s more like a friend than someone who is taking care of her.  This is normal.  Phoebe wants to do fun things with peers.  She deserves that.  Don’t we all?

Researching group homes has been my latest project.  It’s not something I plan on, but I want to have all the information I can.  There may not be a defining moment about what I should do, and I may have to adjust ideas and plans as years come.  To me, this should be something our nation, as a whole, needs to look at.  Why don’t we have housing for adults with autism/special needs in more areas?  How do we do this?  We have come this far to make Word Autism Awareness Day, so what do we do about it? I think we are all aware.  VERY aware.  Now…let’s make some plans so that families can live with peace knowing their children/adults with special needs are taken care of.   (and that they are enjoying life too!)

It’s World Autism Awareness Day.  Now let’s get something done.