The Road to an ADHD diagnosis

By now it’s no secret that Alexis has autism. I can see it in her every day life;  the small signs of autism rearing it’s characteristics in my daughter.
The confusion on her face when she sees someones reaction.
The mirror of someone’s expression I see on her face.
I see the confusion when she thinks she is supposed to be laughing, but the person she is communicating with is upset.
Her interaction with children her age is more a parallel play ground than playing with them.
The melt downs, the crying, the confusion, the frustration, the transition from one thing to another, the anger when she isn’t ready or doesn’t have enough warning about things changing.
Routines gone bad.
It’s all triggers for my girl, it’s all there yet so mild that most think of her as a goofy 5 year old. A hyper fun silly and unique 5 year old. Trust me, I see it too. Her awkwardness and silliness to those around her causes her to act out and most of the time you can’t help but laugh at her silly statements or the confused answers she gives. It’s easy to chalk it up to laughter and silliness, but it’s deeper than that.

Being around family over this past Holiday season was not only an eye opener, but a reminder that most view her as a “normal” kindergartner and probably question what in the world this “autism” diagnosis has to do with their little niece, grand daughter, cousin and friend.

What you don’t see is our behind the scenes and the way I know my daughter. When you come in for a hug and she is in a world of hurt not expecting that. She may run away, she may scream in pain and most of the time, when she receives unwanted affection, she screams.

Autism shows it’s head every day and with out warning, but what causes her  most distress is the diagnosed ADHD symptoms. She spins, she role plays, she reacts, she thinks, she hums, she sings and she moves… constantly. There is no off button, and there is no telling her to stop. To have no control over ones own body must be infuriating. To hear her cries and screams “I CAN’T CONTROL MY BODY” not only hurts to hear, but hurts to watch.

Over the last couple weeks it’s been a painful realization that not only does Alexis have Autism, but she is also going to suffer from ADHD. I guess a part of me has always known this, but the fear of what the doctors are going to suggest when we receive this official word is terrifying. MEDICATION!!

How can I medicate a 5 year old who only weighs 40lbs? She’s my little baby.

I put off what needs to happen, the doctor appointments, the therapies because I’m scared but I am doing NO GOOD with this procrastination of the inevitable.

So here we go, into 2017 with a year full of doctor visits, evaluations, debates over medication or not, therapies. In the long run these things are all good. She is so young and we are getting a head start on her future and for that I am so thankful. But I’m scared.

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Tag Team Parenting

I am married. I have been married going on 8 years this coming January and for the majority of my married life, my husband and I have worked opposite shifts. I work during the day and he works at night. It sucks, I hate it but we realize it’s what needs to happen. For the most part Monday through Friday my husband and I do a quick “tag your it” as far as parental responsibilities and to be honest with you; I feel I get the brunt of the responsibility. 

During the day is when most action happen with kids, responsibilities, demands, phone calls and basically all things pertaining to life. The business hours in our world are 8-5 and 8-5 is when the hubs sleeps. You can probably guess who gets to take on all the fun? Momma bear. To say the least – it is overwhelming and most of the time I feel like a single parent. To all those single parents out there, I give you credit, respect and a massive amount of applause because this stuff is for the birds.  

When school calls to discuss the kiddos rough day – I answer

Parent teacher conferences/activities/sports/plays – only me

When bills need to be paid – I organize and pay

Sick kiddos during the night – I wipe the snotty noses

Doctor appointments – I miss work

House is a wreck – I put it back together

The biggest and hardest is when the special education coordinator calls to discuss IEP meetings, therapies, behavior issues and any issues pertaining to our youngest during school, who has autism and takes quite a bit of our undivided attention – I attend, discuss and listen  – alone

I parent which includes disciplining, nurturing, teaching, caring and all things involved – by myself 

The list could go on…  

What bothers me most is, this is not what I signed up for. When I got married and had children I was excited to start on this adventure with a partner, someone who I could lean on to take some of the stresses of life. That is not at all how things have turned out. Now, before I start making all my readers, if there are any out there assume that I am bashing my husband … he does what he can do. He makes the big bucks and his contribution is often monetary which I am more than thankful for. We wouldn’t have all we do if it wasn’t for his contribution.

More times than not he works 10 to 12 hour days at a very labor intensive job, rightfully so – he is exhausted when he comes home. Sleeping during the day is not at all like sleeping during the night. Naturally, our bodies don’t understand what you are trying to do so the quality of rest just isn’t there. When he does have some awake time during the week before work – he will do what he feels is sufficient around the house. Reality of that is, the impact those things make on the function of our life, is minimal. (((I’m sorry hunny – you know I love you))) 

At one point, or should I say many points in our life – these things have caused major issues in our marriage. I am not ashamed to say that we have been at a point where divorce was our only option. We have been so close that all it took was signatures to finalize that. When you risk losing everything you have built for the last 10 years you tend to look at life a little differently. You actually think about your decisions and what that decision looks like on the other end. With every action is a reaction, a ripple, a mark on your future and on your children’s future. I am thankful that many long talks, many heart breaking crying fests have changed mine and my husband’s outlook on life and our marriage. We don’t look at quitting as being an option anymore, we look at sacrifice as being something you do.  

With that realization has come acceptance of our roles. Just as I get to be there for my children every single day, my husband misses out and it hurts him. For example – this week marks our oldest daughter turning 10 years old. That is a HUGE milestone that he had to miss out on. He didn’t get to see her on her birthday, he didn’t get to go out to her birthday dinner, he didn’t get to see her excited when the workers at the restaurant sang , “Happy Birthday”. He likely will miss out on her birthday party over the weekend as his work has called mandatory overtime. The reality of “tag team parenting” is ugly and someone ends up missing out and that someone is dad. The girls miss him. I miss him, but this schedule is what needs to be done. I have accepted that I am the one who takes most of the weight of our life and he has accepted he will more than likely miss out on important moments.

 us

This life is definitely not made for everyone. There are moments, few and far between where I get a quick feeling of strength. I look at all I do and think, wow I really am doing a lot and I’m actually doing OK. Most of the time I am left feeling inadequate. I wish I had more energy in a day and I wish I could do EVERYTHING each of my children want me to do. Fact is – I have to know my limits because living as a single parent Monday thru Friday leaves me exhausted. 

We sacrifice and we push through so we can appreciate those two days a week (sometimes just one day) where we are together, all four of us and we soak every last minute up. I’m proud of where we have come in the last 10 years and if we can beat the hurtles that have been placed in our way, we can make it through anything.

Tag team parenting isn’t easy – but it’s worth it!

What do you stand for?

I wouldn’t say I have a large amount of friends on my Facebook page. To be honest, in comparison to some I really am the size of a pea in the world of social media. So I realize what I see and who I interact with is a small portion of people in this world. With that said I am lucky to be in the circle of, in my opinion the most amazingly strong willed, loud voiced, factual and passionate people I have ever met. Some I have never met in real life whom I have been friends with going on a decade, some are people I’ve met in my journey of life/career and a small portion are those I call my real life buddies. Regardless of the relationship with this women/people, they inspire me.

 

I spend a good portion of my chill time/alone time/me time (whatever you want to call it), with my phone in front of my face scrolling and reading. Often times I will read a post of one of these inspiring people and I will sit in awe. As all humans do; I find myself comparing myself to their life. I question what happened to them in their world that made them that passionate individual? What caused them to stand for something like “that”? I will even say to myself “wow, I wish I had something I could stand for” and “something I can put my all into”.

 

It’s almost like I begin to put myself down in a way, as if I am not a good enough mom, or I’m not a good enough member of our society or that I must be lacking some form of compassion, empathy or drive. I even begin to question my own parents, parenting. Why didn’t they instill some type of cause to fight for in me?! Why didn’t their parents? The cycle of thoughts can go on and on but recently these thoughts have been met with a sudden thought of clarity.

 

Just a minute, hold on… that is THEIR path. That is what they feel passionate about. That isn’t who I AM. I am me. Lynsey. I’m a mom, wife, daughter, full time career woman, housekeeper and I assure you the list could go on and on. So what if I can’t save the world from drugs, vaccines, GMO or the campaign to “GO GREEN”. I definitely am not going to change the worlds beliefs on topics such as abortion, immigration, education or unemployment in our country. There are some who may look at those statements as pessimistic, like I’m doubting myself, but I must pick and choose my own battles on my own scale. I acknowledge that I wasn’t born with a voice on that level.

 

What matters to me is that, in the walls of my house – the little humans I am raising know what is right, and what is wrong. I care that they will be prepared for what that life (with all of the above issues going on) is tough/miserable/ugly/cruel. I am teaching them that you look out for people around you, you lend a helping hand, you stand with integrity even though it might not be the “cool” thing to do. They will know that their word is their bond, when you start something you finish it and you put your all into what you choose to do. No quitting, no excuses and no whining. You will be kind, accepting and forgiving.  They will learn that no one is better than anyone else, we are equals. The words that I hope ring in their ears as they journey through their life, “Never back down from something you feel strongly about in your heart”.

 

These are the things that are important to me. Those two little girls of mine are my passion. Because one day either of them may see something they don’t like and they will decide to fight against popular belief and feel the passion that I so desperately wished for. I may not have been chosen to be the voice I am envious of in my friends, but I sure as hell plan to give those tools to my daughters just like my parents did with me. They gave me the tools I needed to make being a mom, my priority and passion!  

 

So I ask myself, What do I stand for?? I stand for my children’s future!

Our Road to a Diagnosis

Since the day my youngest daughter was born; I always knew she was unique, amazing, incredible, her own person and extremely loving. I remember holding her as a new born baby and feeling astonished at the amount of, or should I say lack there of, crying she would do. She always seemed content and she had the sleeping thing down with in the first 3 months of her life. I truly could not have asked for a better baby.

When Alexis hit 1 years old she was already walking and I was amazed since it had taken our oldest 13 months to get the whole walking thing down. I do remember feeling concerned as to the vocabulary as months went on after her 18 month mark and even into her turning 2 years old. She would do a lot of pointing, grunting, whining towards her sister and to me. I always chalked it up to the fact she was the baby in the family and one small whimper and me, her sister or her daddy were getting whatever we thought she needed, so we didn’t put too much thought into it.

Once she turned 3, our in-home care provider whom my children have gone to since my oldest was 3 months old, mentioned getting her evaluated to start in the early child hood center. She  mentioned that she always recommends this program to families who live in our town and the earliest kiddos can get tested is 3. I was clueless about this program because we had just recently moved to the particular city we now live at this time. Our baby sitter raved and raved about this program and mentioned it was free (as far as tuition and what not – of course our taxes pay for it). We aren’t the most financially fortunate people so the idea of free school for my daughter who I did have some slight concerns about was everything I needed to hear.
At 3 years old Alexis was having a hard time focusing, listening, potty training (still), forming full sentences, sitting still and she would not talk to me, communicate with me or show she understand what I was saying. I was concerned.
So the next few weeks following her 3rd birthday I got her evaluated. Little did I know this school was exactly what we needed. This was put in our life for a reason and I couldn’t have been more thankful. This school is for kids who just need that little boost to get started before kindergarten and well, Alexis was accepted and we were thrilled.
At 3 years old we were going school supply shopping, preparing her for bus rides to and from school and helping to get her excited for teachers, new friends and all fun things involved.

Little did we know what was headed our way….

The school year started Alexis was cute as ever with her new back pack and her first day of preschool outfit.

She’s the little blonde below…

lex.jpg

I could tell she was confused but excited for this adventure and I didn’t really have much hesitation sending her to school. I was happy she was getting this early jump on education, but then the phone calls started. With in the first couple weeks of the school year her teacher was emailing and calling expressing her concern for Alexis. She wanted to come together with a few other people/counselors/social workers/teachers with in the school to discuss Alexis.
Honestly, I was shocked. “what??”
At this point I could see and understand what issues they were having. We were having some issues similar at home and at daycare, but I’de never experienced this sort of thing before. My oldest daughter was in her 2nd year of school and she was thriving and I had never received a phone call of concern over her. I was confused, but I went to these meetings with an open mind.

The first meeting was overwhelming. If you’ve ever been to one of these you will understand. There is one of you and about 10 other people. They go on and on about their concerns for your child and you start to think, “do they have anything good to say about my baby” and they do, but you’re numb. At least I felt numb… or overwhelmed…

The next step was to have her tested and evaluated to start the IEP process. “the what??”
I was so confused. I had never heard of this before in my life, but it sounded like a good idea and it sounded like they all wanted what is best for my daughter, so the process began.

I was sent home with numerous documents and questionnaires to fill out about lexi. It took me daaaaaayyyy to fill them all out.
Again, I was overwhelmed.

After months of testing, evaluations and meetings after meetings… I finally had the final report of the IEP. Alexis tested in the young child with developmental delay. ok??
What does that even mean?
I guess I understood it, I recognized it and I even accepted it… but what can we do to help her is the question I wanted answered.

They were going to have some one on one time with her.

Alexis’ biggest struggles are as follows:
Social interaction
Hyper
no focus
She can’t sit still
She doesn’t understand your emotions (As in someone she is interacting with)
No eye contact
Melt downs
Unable to understand what she is feeling.

As the school year went on, she didn’t improve or seem to be soaking in the help she was getting so I finally made an appointment with our local children hospital to work on getting her evaluated for what I thought  might be ADHD, ADD and at the most – autism, but I never gave that too much thought until the months after the evaluation – 2 summers ago and they diagnosed my daughter with ASD which stands for Autism spectrum disorder. My daughter has Autism.
She has been labeled.
She will live with this for the rest of her life.

The shock didn’t ware off until 2 years later, now… when she started kindergarten…

And I will continue on my next blog about the emotions that came along with this diagnosis.