This is the time of year that I get really exhausted.  I could sleep for hours on end.  I’m not sick, or injured. I’m just mentally exhausted from life.  While Phoebe continues to thrive at school, she keeps me on my toes at home.  As her mom, I can’t have a down moment, or she preys on it.  Phoebe is addicted to food, and doesn’t know when she’s hungry or not.  I believe she has an oral sensory issue, that has been going on since she had her pacifiers (ninny’s).  She hated letting that go, and cried for a week when we got rid of them.  So much so, that we gave them back to her at age 3.  She STILL tears up when we talk about them.

If I let my guard down for more than a moment or two, she has some kind of snack or drink from the refrigerator.  My son and I have to use a padlock on the refrigerator and the pantry.  Sometimes, she even gets up in the night to eat.  It’s like a scene out of a movie…all the drawers and cabinets open.  If one of us forgets to lock it, it’s like someone broke in to the house and ransacked our food.  When I say I can’t let my guard down, I mean ever.  (EVER!)  I sometimes have to take the sugar bowl with me to bed, or she tries to eat the sugar out of it.  I’ve even taken the gummy vitamins and kept them in my closet before.  It’s a never-ending battle that I wish would get a little easier.  My poor son and I are constantly looking for the keys to the locks.  It’s frustrating, and exhausting.

Phoebe is overweight.  I know people look at me and judge.  I’m overweight.  I get it.  My eating is all stressed based, and I admit that.  Phoebe most likely eats out of anxiety, and control.  I had her tested for Prader Willi Syndrome when she was 5, and she did not have it.  That wasn’t the answer, and I just added it to the list of her many issues.  She doesn’t know when she’s full, or care.   She manipulates, screams obscenities, cries and does whatever she can to get food.  It’s not pretty.  It must be as equally as exhausting to be her brother, and he seems to handle it all pretty well.  Knowing someday he will be able to move out and be on his own is my only solace.  (I can’t even imagine what THAT will do to her)

In the meantime, I will continue to monitor the food and do the best I can to keep her somewhat healthy.  I’ll get her walking and working out as much as I can, and as much as she will tolerate it.

Then, I’ll take another nap.  (Here’s to 19 years!)

Recently, I was shopping in Target and walked by the Pharmacy.  A young lady was standing at the desk, and when asked her birthday she replied, “March 4, 1999.”  Phoebe’s birthday.  She told the pharmacist, “I’ll be back after I run errands.”  She had keys in her hand.  I stood there and cried.  In the middle of Target, I had a mommy meltdown.  This was what Phoebe could be doing.  She could be a young lady who runs errands, and gets her own prescriptions, and has college letters on her pants.  I cried huge tears, and I had to leave.  This hasn’t happened to me in years.

I’ve always been a realist when it comes to Phoebe and her disability.  I know her limitations and her strengths.  This still doesn’t make it easier when everyone else is growing up and doing the typical things, and she isn’t.  Friends are leaving and gone to college, and her brother is doing things that typical teenage boys do.  She hates being left behind.  Hates it.  (Don’t we all?)   She is hard to handle at home, and can’t be home alone.  (Oh, how I wish)  She goes everywhere with me when sitters and funds are unavailable, and we have a certain love/hate relationship.  She wants me around, but not really.  She wants me to help her, but not really.  She still continually seeks attention whether positive or negative.  This has NEVER changed.  Now, her disability and her age compete constantly.  It’s a little bit of a roller coaster living in our house.   It has been 18+ long years of doing this, and it’s simply tiring – for all of us.

I had her most recent IEP meeting with her amazing team of teachers, and consultants.  They could not say enough good things about my independent, happy, and thriving daughter.  She has friends, and loves school.  It’s like her own “college” experience.  I had to clarify which student they were talking about.  She needs little direction, does her jobs, goes to class, and takes care of herself at school.  I could not have been prouder, and dumbfounded.  I said, “We are talking about Phoebe right??” This is the COMPLETE opposite at home.  I explained this to them, and they made me feel much better by explaining that this is true of most of their students.  We made a plan for the next year, and I began to see that she is doing much better than I had hoped.

For the time being, I have to be happy for the girl/woman she is becoming in her own weird way.  She won’t ever be normal or typical, but that is simply just the way that it is.  For now, I’ll cry happy tears for who she has become.

I have guilt.  It’s not rational, it’s emotional.  I have guilt that my daughter is the way she is.  I often think of how she could be, as opposed to how she is.  Did I do something intentionally?  Well, we know the answer to that is no.   I didn’t take any drugs, or smoke anything.  I didn’t eat tons of fish, or drink caffeine or alcohol.  I did what the doctors told me to do.  I didn’t have anything out of the ordinary happen during her birth.  (That I remember or know of)  However, I still have guilt about every moment of that time.  Every moment.  What did I do or not do that made it happen this way?  Why does one child have something like this and another does not?  I can’t answer any of these with any kind of rational answer. It’s not possible, but I still feel guilt.

I have guilt.  I have guilt that my daughter has not grown up as a “normal” girl.  That she has not had friendships like most girls.  She hasn’t had boyfriends, clubs, sports, driving or college.  Phoebe needs constant care.  She is an 18-year old that needs someone to watch her and make sure she is cared for.  She can do a lot, but still needs consistent guidance.  Phoebe does have a great support group.  She has caregivers, and family that do a lot for her, and I wouldn’t have it any other way.  They have learned to work around Phoebe’s different needs.  For this, I have horrible guilt, and it’s not rational.

I have guilt.  I have guilt that Phoebe’s brother hasn’t had a normal childhood.  Being the sibling of a special needs child is hard.  He works around what’s best for her. You can’t imagine the tears that were shed when they were little.  Brendan didn’t understand, and would sit and cry.  I would cry with him and try to explain.  Eventually, it was our normal.  He got used to it and would keep right on going with whatever he was doing.  Now, he’s a “normal” teenage boy who has to work around his sisters schedule.  I can’t imagine the freedom he will feel when he gets a drivers license and can leave this house.  I have tremendous guilt for this.  All I ever wanted for him was a normal childhood.

This guilt is my own problem.  I will never admit that it crosses my mind more than a few times a week.  My children are happy (dramatic), thriving teens.  They both have a great support system.  I have worked hard to make it that way.

I have guilt.  I am a Mom. 🙂

My son has started high school.  High school.  He’s growing up, and I’m not sure how to manage all this.  I have to talk to him about homework, girls, staying focused, and reminding him of just about everything.  We have had the drugs, sex, and driving crazy talks. (Not all at the same time)  I worry when he leaves that he will make good decisions.  However, I don’t worry about whether he will have friends, or if he’ll sit with someone at lunch.   I don’t worry that someone may prey upon his disability, because he doesn’t know better.  I do know he’ll attend Homecoming, football games, basketball games and Prom with friends because he’s a “normal” teenager.  He can take care of himself.  (for the most part:)  He has a better social life than I’d ever hope to have, and I worry about him being safe every single day.  It’s constant.

I am trying to cherish the moments as they are, because I know there will be an end to his high school career, and having him in my house.  He will move on and out, and go to college.   He may get married, and have children.  This concept has been a hard pill to swallow lately.  He has always been the “baby.”  It felt like he would never go to school.  He was sort-of put on the back burner since he was a baby.   This does NOT mean I loved him any less…just that he is the brother of a special-needs child.  It’s different.  He was resilient.  I carried him in his car seat to Phoebe’s speech appointments when he was 3 months old.  (three times a week)  He also got dragged in his baby seat to the Beaumont Hospital Developmentally Delayed Pre-school 2 days per week (there and back).  He got bottles in his seat EVERYWHERE we went. He never got a nice nap, because we always had to go get Phoebe, take Phoebe, or make sure Phoebe got this, or that.  He was toted to her schools in his pajamas eating cold toast, and peanut butter.  He never even complained.  His school career so far has been easy for me.  He went to pre-school, then a gifted and talented program for elementary school.  Middle school saw many changes, but he did very well in an honors program.  His school career has made me so happy he is self-sufficient.  However, am I really happy?  I want to be involved in everything he does, and that doesn’t go over well with a 15-year-old young man.   I don’t want to miss anything!  (I’ll ground him if he needs grounding, but slowly I have to let him go)   For now, I am enjoying all his games, and school events as a first time “normal” high school mom.  I’m trying to volunteer and help as much as I can.  I love watching him experience high school.

I will try and love every moment (even the not-so-great ones), because I know these moments won’t last forever with him.

It’s hard to explain the level of exhaustion that most mothers of special needs children have.  It’s not the, “I need to sleep” exhaustion as it is more, “I need a mental health month” type.   (Although, I could use some more sleep) Phoebe has multiple disabilities, none of which are visible.  She has mental disabilities, and emotional impairments.  About the time I have her figured out, she changes it up.  She seeks attention however she can get it.  She always has.  Always.  She is terribly impulsive.  She will blurt, touch, hit and grab food at any moment she can.  She will do anything to make you mad, and do it over and over until you want to scream.  She will bait you in to a screaming match, because she wants the attention.  Then, in the next moment, she will do something nice for you, and do it over and over.  It’s never predictable.  She has yelling, screaming, swearing, hitting meltdowns that are true mental breakdowns only because some kind of plan has changed.  She also has breakdowns because she can’t get what she wants, or I say no to one of her many controlling demands.  Either way, every day is a challenge.

This past few weeks has been very hard for me, as many of my friends drop their children off at colleges all across the country.  I won’t get that.  I am excited for the next steps for Phoebe, but I am also mourning a loss.  I won’t get that level of independence from her.  I won’t get to see her grow up and decide what she will be.  (I know- those aren’t a big deal to a lot of people) I will see her grow in many ways, and for that I am thankful.  It comes down to the fact that I am mentally exhausted parenting a child that needs constant attention.  It has been eighteen long years, and I’m not so sure this will get much different in the future.  I just don’t know.   You can judge all you want, but there are moments I wonder what life would be like if she were “normal.”  Where would she be going to college?  What would she be like?  What would life be like if I didn’t have to have someone to watch her, or if I didn’t have to take her everywhere I go?  It’s natural to think this way when I am at the end of my rope.

As the new school year starts, I am hopeful for Phoebe’s future and hope that her new program is a great fit for her.  I’m am hoping for a less-stressful year, with less appointments.  I am going to take in every moment of my son’s high school years, as he will be the only child I get to experience some “normalcy” with.

Whatever normal is. 🙂

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Side note:  I worry about the future of the Mental Health System …as I will be directly impacted if they cut funding of programs for people with autism and emotional impairments.  I am so thankful for what our local Community Mental Health System is providing right now, and hope I can continuing getting services that Phoebe needs to be successful.  It’s not a perfect system by any means, but I’ll take what I can get.

I am the mother of a special needs child/young adult.  I have been since she was born.  I’ve said this before, and I’ll say it again…this life is not for the weak of heart, or for the weak, in general.   To be the parent of a special needs person, you have to be ok with not going to every event, party, dinner outing, sporting event, coffee date, movie, family function, or holiday extravaganza.  The bad by far outweigh the good.  My daughter wants me around.  She feels safe, and comfortable with me in the house.  I am her source of information, and her sense of ease.  Sometimes, when I get home the emotional punishment, from her anxiety, is not worth going to the event.  I have to weigh the pros and cons before going to every single thing.  Some days, it’s worth it for my sanity and other days I just can’t do it.  I can’t live through a day of behaviors and meltdowns (or even nights), after I get home.

Last week, I was gone for 5 days with my mom and my niece in NYC.  Phoebe had an amazing Nanny that came and stayed with her, and her brother.  She was more at ease than usual, and did lots of fun activities to stay busy.  She ate new foods (WHAT?) and helped with chores more than ever.  This was not cheap.  My respite care application had not been approved for overnights, so the cost was on my shoulders.  (Did I mention I am a teacher?)    It was a much needed vacation away from responsibility.  It was eye-opening to see what it’s like to be hanging around a normal 18-year-old.  We saw shows, shopped, ate amazing food and laughed a lot!  It was a nice change, that I am SO thankful for.  Upon my return, I came home to a clean house, and a daughter somewhat excited to see me.  Better yet, we had a decent week this week.  Phoebe continued to go to her favorite daycare, and she did pretty well.  We fell right back in to our routine.  (With just a small behavioral issue today at daycare, because things can’t be perfect!)  I even got to work a few times to get ready for my school year.

I am hoping that these little get aways and mental health moments will be easier for her, and for me.  After being away, I feel rejuvenated (and maybe she does to?).  This past year has been a test of my patience, tenacity, and my general parenting skills.

(2016/2017-Over 30 appointments for Guardianship, Dental work, Healthcare, Community Mental Health Services, Psychiatric care, and Evaluations)

We both need these little breaks.

I’ve written before about my other child, Brendan.  He’s younger by 3 and 1/2 years.  He’s just starting high school, and now he has become the “older” brother.  The dynamic is changing and everything is different.  Phoebe has always been the older sister.  Just like any house with 2 children, we made a big deal about it.  Phoebe got a “Big Sister” shirt when Brendan was going to be born.  Even with her disability and delays, she knew that she was the older one.  She played that role well, because we taught her how.  She would try to discipline him, and show him the right way to do things.  He looked up to her, just as siblings do.  This has gone on until recently.  Brendan is now 5 foot 10 inches tall, and 180 pounds.  He’s bigger than Phoebe in height, and is a full-blown teenager.  He has some sass to him, and now he’s become the older sibling.  Phoebe may be 18 in body, but she is closer to 8 years-old in mind.  This switch is really hard on her.  She doesn’t like the change.

Brendan knows her disability, and sometimes he understands it.  He lives it, but he doesn’t always like it.   He doesn’t want her to question his every move, or ask him 100 times what time he will be home.  Phoebe does not like the fact that Brendan goes out with friends.  He goes to events, parties, dinners, movies, and even on vacations without her.  This has proved to be challenging for her.   This is not the norm for our house.  According to her autism, we do things “together.”  That’s what this family does (or did).   She has meltdowns when he’s not home EXACTLY as stated, because her anxiety takes over.  When he was younger, she had some control over this.  She knew, because I knew.   Things are changing…and it’s not easy for any of us.

Brendan is a kind-hearted, soul.  He would hate to admit it, but he has endured more than most siblings have.  He’s resilient.  As a little boy, he would cry and hide when Phoebe was having her first meltdowns.  I would comfort him, and explain to him about her disability.  This happened 100’s of times. After a while, he understood and would ignore them, or shut his door and lock it.  This took years of understanding and many scenarios.   He would ask why.  “Why does Phoebe have autism?  Why does she do this stuff?”  Those answers were hard to give.  As a teen, he has started to understand.  He has come such a long way.  He’s amazing as a brother and really watches out for her.  As a teenager, he does normal brother things by teasing her, driving her crazy and sometimes even making her cry.  I let these things happen, because sometimes normal is ok.  We are working on Phoebe and her understanding that “normal” teenager means he won’t be home as much, and that he may be more like the older brother now.  I’m not sure she gets it, nor will she.

To be honest, I’m not sure I get it (or like it).  I can’t imagine what life will be like for her when he heads to college.   For now, we will work on social stories for Phoebe, so she can understand that Brendan will be out of the house more, and will be driving soon (gulp).  We will work together as a family…like we have always done.

It’s my fault, that I don’t go to every soccer practice and every game that my son has, or leave when she has had enough (at that EXACT moment).  It’s also my fault that I don’t get a slurpee every day.  It’s my fault that I tell her, “NO” when she has had enough food.  It’s also my fault that I turn down the sound to Dora The Explorer and Blues Clues.   According to Phoebe, it’s my fault I make her wear a bra, wash her hair, wear deodorant, and brush those TEETH!!!  I am certainly at fault for making her wear t-shirts in the summer and not sweatshirts, and also making her wear sweatshirts in the winter and not t-shirts. I am at fault, and “THE WORST MOTHER EVER” for allowing her to buy gum in the check-out lane if she has behaved as expected, and not cheez-its, bottled water, a slurpee, beef-jerky, skittles or life-savers gummies.  (Thanks grocery stores, by the way)  Besides these things, I am also at fault for telling her she can’t have my phone for the 400th time and text people “hi, or sdfakjslhfk,” I realize that a lot of this is teenage behavior, but most of it is autistic traits.  These are daily activities, and I find myself saying no a lot of the time.

I’m also at fault for not accepting that the first school district she attended said she didn’t qualify for speech and language therapy, then taking her to Beaumont Hospital and getting a 35-page report on the things she needed help with.  My fault I drove her 3 days a week to 3-years of intense Speech and Language Therapy.  It’s my fault that I didn’t accept, “ADHD” as a diagnoses.  It’s my fault that I took her to Psychologists, Neurologists, Geneticists, Early Childhood Developmentally Delayed Preschool and playgroups, and Occupation therapists to make sure she was the best she could be.  I know it’s my fault that I have sat through countless IEP’s, behavioral testing, doctors appointments and surgeries to see that she is getting the best care possible.  Now, I’m working to set her up for the rest of her life, and I know that will be my fault.  My fault.

It’s my fault that I have been working hard to be a good mother, no matter what her disability.  It’s my fault she is mad at me, because I want what is best for her.  It’s my fault she has become the young woman she is.
I’ll take that.
Most days anyway.

The autism in this house has a control issue.  There is need to control situations so that “autism world” is predictable and manageable.  Phoebe has learned to say the right things, react a certain way when situations arise.  Her training in school and various therapies have taught her this.  Phoebe’s autism is a different kind of autism than what you would typically hear about.  While at Yale Autism Clinic, the doctors were perplexed by her.  They said to me, “She is autistic, but she’s different.  She is verbally superior to most, but doesn’t understand a lot of what she is saying.  She’s not classically autistic, or high-functioning autistic.  She’s in the middle.  Sort-of.”   I thought that was great.  I was overjoyed to hear the news, until another doctor told me that she would classify as PDD-NOS (Pervasive Developmental Disorder-Not otherwise specified).  This meant that there wasn’t a lot of research on the disorder, as each person with it is so different.  Great.

In the last year, I have done more for Phoebe than ever before.  I thought the first few years of her life were difficult with asthma and illness, but that doesn’t hold a candle to this.  I have been to at least 25 appointments since June of last year.  That doesn’t count regular doctors appointments (6 to the dentist alone) and ER visits that my mom helped with.  Phoebe and I sat with a woman to do an intake at our local Community Mental Health Department that had never dealt with Autism or PDD-NOS.  She didn’t understand Emotional Impairments, and didn’t understand anxiety.  She told Phoebe the appointment would last HOURS, and that she should be patient.  I shook my head.  I finally told her to call me and we could finish.  It was the most ridiculous experience.  I was proud of Phoebe for being able to control herself for an hour, when all I wanted her to do was freak out, so we could leave.  I then went to an “autism” evaluation that had a young lady asking Phoebe questions like, “Phoebe, when you were young did you look at people when they entered the room?”  About mid-way through this “evaluation” I stopped her.  I handed her the Yale Autism Clinic evaluation done when Phoebe was in 4th grade.  It is 35 plus pages about Phoebe’s Autism/PDD-NOS diagnosis.  I said to her nicely, “We are leaving, and if you have any other concerns you can call me.”  Phoebe said, “YEAH…LET’S GO.”   I am not naturally an angry person.  I usually give people the benefit of the doubt.  This whole process has me doubting everything.

I am in the literal fight of my life to prove she needs me as her guardian.  I will attend a Psychological evaluation that the court orders.  My mind immediately goes to the thought of why ANYONE would want to do this if it wasn’t necessary.  Are there people who try to get guardianship that’s not warranted?  I can’t imagine (but am sure there are).   I will get an Guardian-ad-litem, because the court wants to make sure she is what I say she is.  I can’t wait for that person to come over.  I’m certain Phoebe will tell them to get out in her “subtle” way.  I have made about 50 phone calls to departments about the fact she is being denied CMHS services starting in April, because certain paperwork was not filed.  (which it was)  (Thank god for my case worker, who is the nicest person ever) Next up is Social Security Disability.  I can’t imagine what that will be like. That was an hour phone call, to which then the person told me to call back April 1st and the process would be easier, because she will have been 18 for one month and considered an adult.  (With clenched teeth, I smiled and said ok)

Now, you may think this is a lot for a Single Mom.  It’s a lot for ANY Mom/family. It certainly is a lot for me.  I am a teacher that also works about 50-60 hours per week.  (That’s right, I come home and do work)  The system wants me to fail.  They want me to give up.  I feel like every step is a test to see if I can withstand the process.  I have to admit, it might be easier to give up.  I’m exhausted most of the time.  I yell more. I’ve been more sick than ever this school year.   However, I can’t do that to this family.  Phoebe NEEDS these services.  SHE is the reason these services exist, right?  I’ll keep fighting and calling, and doing all these appointments with a tense smile because she needs it.  We need it.  She has to have some sort of a happy future.  She deserves that.

EVERYONE deserves a happy future – disability (special needs) or not.  I’m ready to fight.