Doesn’t Matter the Label, Just Matters That I am Mom

The label that my middle child receives down the road as we venture into the path of a possible new diagnosis really doesn’t matter to me. Aj’s Dad and I have been raising the same boy for the past seven years so whatever label is placed upon our son really doesn’t matter as it pertains to anything other than giving us something to research better. You see, no one lives our life. No one outside of our home has experienced the real Aj.

With no medication interfering with Aj in any way positive nor negative, the school is starting to get a glimpse into what our world has been like for years with Aj. He’s either withdrawn and down or hyper and happy. This is why there is certainly a mood aspect to our son but there is also this other side of Aj where he shows anxiety, he is anxious about new things and anxious that life needs go to a certain way. Then there is that routine driven side of Aj and that mentality that once he has it in his head something is correct, there is no talking him out of it.

There is the side to Aj where you could tell him the sky is blue and if he is convinced at that day and time that the sky is purple, then the sky is purple. It’s that simple for Aj. Aj is a complex child yet also very simple. The real world rules don’t necessarily apply to our sweet Aj, he is unique and in some ways unique is a great thing while in other ways unique can get into the way of a public school child. Aj is starting to show me signs of concern in the public school environment, I wonder if he will ever make real friends, real long term friends. I wonder if Aj will ever have a life that is one that people classify as normal.

Then I realize … those wonders are my anxiety kicking in. As I watch Aj suffer with some anxiety symptoms, I notice my generalized anxiety disorder starts to chime in. It’s this emotional connection that Aj’s counselor has advised me to separate better with that keeps me wondering and worrying about things outside of my control. I am better at controlling my anxiety, after all I haven’t had medication for anxiety in many years. I have learned to fight anxiety and I will teach my son the same skills, as I have with my oldest.

Aj is a happy child, if anyone asks I would say he is compassionate with a huge heart but he lacks the understanding of sarcasm or snide comments. You see, with Aj you have to say what you mean and mean what you say because if not, he gets frustrated. Aj doesn’t comprehend sarcasm for the most part, yet there are a rare few moments that he actually may look at you after a quick witted comment and smirk as if he got it. Those moments are rare. For the most part, Aj is a child who needs people to say what they mean and mean what they say.

Aj cannot have people in his home environment that cannot be that person for him, it’s not easy. My daughter and his younger brother have worked hard and continue to work as a family to ensure Aj has a safe, loving home environment. That means far too often we have to bite our sarcastic tongue and say things the way Aj needs to hear them. While we find humor in sarcasm, Aj does not. In my mind, it’s not that difficult but when you have a tween daughter and younger sibling of a child like this, it can cause a ruckus from time to time.

I don’t want to deter my daughter and my other son from being who they are to their core, but I want to teach them to respect who Aj is at his core as well. It’s a juggling act around here most days. Whatever label Aj ends up with for a diagnosis, I am okay with that, because after all, I have been raising him for seven years so no matter what they say “he has”, reality is HE IS my son, always has been and always will. I will always be here fighting for him right beside him and encouraging him to move forward to lead a happy, healthy life.

As I do with my other children. That is my job. My job is Mom.

Updates on Aj, After our Last Counseling Appointment

This has been a journey and a half with my now seven year old son, Aj. First day he was born I could tell you something wasn’t right, he was more angry than happy. It appeared my son had inherited something that runs heavily in the gene pool; bipolar. So it began, a lot of testing and counseling to ensure we were parenting the way Aj would respond. Aj had test after test, all coming back that he was a normal child as far as brain goes and most of the developmental areas. Sure Aj was not speaking much by 15 months of age, but he ended up having glued up gunk on his left ear drum from too many ear infections as a child, tubes in ears were placed and voila, the child blossomed in speech. For every little milestone not met, there ended up being some medical reason. Nothing really waved a red flag other than the fact that Aj had a mood disorder going on. At first they wanted to say he was ADHD, but after ADHD medication gone bad, we realized that wasn’t the right diagnosis. After many years of counseling, parenting techniques taught to us and medication after medication for mood disorder as well as the one time try of Prozac for anxiety, it has now been brought into the light that maybe Aj is on the autism spectrum.

Raising my Son Aj

As we met with the counselor that has seen Aj from a young child to the current year, the observations I was making about Aj started to raise a light bulb with both the counselor and myself. I’ve been thinking the autism spectrum for a while with Aj but never did he have such strong symptoms of autism until this past month without medication. Aj hasn’t been on any medication since January 20th, 2014. In time I have noticed some things about Aj, that while some were there from the beginning, they are far more visible to everyone in his world now as time has gone on.

  • As a baby; Aj needed to have juice, milk and water in specific cups. If those cups were not used he would have a meltdown. I recall, back when I was married to Aj’s Dad that we left a note for my ex SIL that Aj must have his milk in “x” color sippy, his water in “y” color sippy and his juice in “z” color sippy. If you messed that up, he would have a meltdown.
  • Aj didn’t potty train until four years and 3 months of age; while I have no clue if this is part of autism signs or not, I can say it was abnormal as his younger brother and older sister trained by age 2.
  • Time went on and Aj still thrived on a very routine driven lifestyle; even with medication Aj needed to know x,y and z would happen in that area every single day. Should an appointment be scheduled after school and we have to go to that appt instead of right home for homework, Aj would have/will have still to this day, a meltdown.
  • Aj clearly is a rigid fellow too, with some anxiety which means he needs an almost unrealistic environment to live in; one in which everything happens the same exact way each day, down to his fried egg sandwich for breakfast each morning.
  • I found myself saying, as of late, that Aj would do best in a world where everything is the same every single day, nothing changes, there are no appointments, no changes in routine, where everything happens in an x,y,z format. Everything each day needs to happen how Aj sees it to be his norm, or else there is an extreme meltdown of frustration.

Raising my Son Aj

As time has gone on, now over a month and a half of Aj without medication, I am seeing the need for him to have more than one blanket to fall asleep. The need for everything at bedtime to go as planned, so let’s say his five year old brother goes off kilter and starts being silly during bedtime book time, Aj cannot handle it and will get fixated on something. If Aj has anything happen to deter him from his path of normalcy he will get into a frustrated mindset where he can be found to quickly go thru the home and hit things, throw things and just have a total rageful fit. I have noticed, as of late, his quick frustrations or rageful fits are derived from something not happening in the way they normally do or in the way Aj has it in his mind they should happen.

Aj thrives on electronics, the counselor has advised us to take them away from his life as much as possible and since they are such an important part of his world, to use them more of an incentive based privilege versus a norm thing in his daily life. Using the electronics as a privilege has really helped to get Aj come back down to Earth at times during his frustrations. I have had to restrain Aj more often than not these past couple of weeks due to frustrations beyond his control. I have had to hear him spout off words like dumby, liar, stupid … all words he rarely ever used in the past. My heart breaks watching Aj fall apart because the more each day goes on, the more I see a child that looks a lot like Max in the series on prime-time TV called Parenthood.

While it doesn’t matter to me what label is placed on my son Aj, I just need something to figure out what’s going on. I already know how to parent Aj, he is a unique child who thrives on routine. I do everything in my power to ensure his day is full of things that take on a daily routine, and in the Summer I even create a poster board with times for everything so that the days go by much smoother. Even my oldest, and only daughter, stated that Aj did really well this past Summer when I started using a poster board schedule for the family.

Raising my Son Aj

We have some great times around here, Aj isn’t really as moody as I once thought him to be. In the past he had two moods; angry or sad. There really was not happiness. I imagined my son Aj a lot like my sister who has bipolar. Still to this day with some of the symptoms Aj shows, I can see a slight mood disorder as part of him, but overall I am hearing my inner mom gut scream Autism. I asked the counselor about this and he said that mood and anxiety can take a part in Autism. I had no clue. I am meeting with Aj’s pediatrician in a week or two as a means to get Aj in for an autism evaluation. I never knew they had such a thing, but this is our next step in the journey of raising Aj. For now, I know what he needs; routine, routine, routine and as much of a free spirit person I am – I have to learn to be more routine driven for the sake of my  middle child’s growth.

We have previously questioned autism, so did Aj’s counselor but now the signs are far more than I can share in this one blog post, just know that I trust my instinct with my child and I also trust his counselor a lot!

If you have any resources for autism, such as a check list of symptoms or what not, that I can review to really get a grasp on things to share with the pediatrician for our appointment, that would be great. As this pediatrician hasn’t been so helpful in the past and I want so badly for her to hear me and help my son this time around!

 

 

School Vacation Week Is Nearing an End

This week has been my kids school vacation week, starting last Friday with a cancellation of school due to weather, they get a whole 10 days of break from school. Right now my biggest challenge is going to be on Monday, when my seven year old son Aj is returned to school. Aj is convinced this is the break that happens in the Summer before he goes back to school for the next grade. I’m not really sure how to get through to him, as he is certainly not easily convinced of anything he feels otherwise of when he isn’t on medication. I just hope his Dad doesn’t have a hard time come Monday when he returns him to school. Fingers crossed.

February Vacation with my Kids

I had a blast making fun breakfast options, such as french toast this vacation. I also made the kids their scrambled eggs, toast with jelly or fried egg sandwiches from day to day. Breakfast is one of those meals that I allow the kids a couple choices. I had such a fun time hanging with my kids, I can’t say that Aj wasn’t a bit of a challenge though. One thing I have noticed with Aj not being on any medication is that I have to keep an eye and ear out for any situations that could play out to a potential meltdown. When I say meltdown, it’s not a normal meltdown that most deal with as a parent and child. Aj’s meltdowns are extreme in nature and he has no reasoning skills nor logic in his thought process when not on medication. You simply have to be proactive and give consequence for actions; the punishment that fits the crime so to speak. I have found this week that if I am proactive and give Aj some “chill out” time before his frustrations escalate we can have a pretty peaceful day, even if still busy with him having to be constantly watched.

February Vacation with my Kids

One day I made a blanket fort which was something to keep the boys busy through out the day. Every once in a while they would go back into the fort to hang out and have fun. I love that the kids all enjoy simple fun like this. Even my daughter who had a sleep over one night, made a blanket fort out of her bunk bed for her girlfriend and her to hang out in. Another fun at-home idea was to use a blanket for magic carpet rides …

February Vacation with my Kids

The boys laughed so hard having magic carpet rides … I loved hearing my Aj giggle just like his brother K-man. It was such a wonderful time that day, full of more laughter than anything else. I also captured a sweet photo of my sons, Aj actually smiling in it ..

February Vacation with my Kids

When asked if I am ready to have my kids back to school? I say yes and no. I am ready because they need the education and break from being stuck at home due to the cold weather but overall this week has kept me emotionally and physically drained in ways that are not normal. You see, normally there is argument after argument, fight after fight with my son Aj but this week really wasn’t that bad so as long as I stayed proactive we had little to no major issues.

What are some ways you enjoy family time inside of the house without television or video games?

My Observations of Aj Without Medication – Mood Disorder & Anxiety Child

If you are not familiar with this child of mine, please read more on site at the Mood Disorder category to get yourself familiar with some of the back story, or just read along here if you wish! The gist? My son Aj is 7 years old and he long ago ended up being diagnosed with Mood Disorder – NOS as well as Anxiety – NOS. This is my update regarding the fact that he has not been on medications since January 20, 2014. I use these blog posts as a way to document my observations while we wait for him to see a new psychiatrist and to possibly help others in their own lives.

Raising My Son - Mood Disorder and Anxiety HappilyBlended

It has been 8 days since my last update regarding Aj not being on medication and how frustrated I was starting to get with some of my observations, I will tell you this – raising a child that has all of these symptoms and is not a text book label for a diagnosis really is draining physically as well as emotionally on his whole family. Having a child that needs extra extra attention does take away from the other children and can create this domino effect of spiraling downhill, but we are a strong united family and work hard every day to ensure we keep our happy during these challenging times.

We have met with the counselor since my last update and it was decided that Aj, while he does have an underlying mood disorder, has also picked back up with some learned behaviors. This was of no surprise to me when Aj’s counselor stated this because after months and months of Aj being off kilter, it has been difficult to be consistent as a parent. When Aj is not on proper medication, or not any medication at all, his reasoning and logic skills go out the window. This is a child who seriously believes that he did/does no wrong and he also truly cannot remember when he did something only moments ago. It’s difficult, sometimes near impossible, to get through to your child when he is like this. I admit that I am only one person so when my level is full, I will let some things slide. This is my bad and something I made a clear conscious effort to work on since our last counseling session.

Raising My Son - Mood Disorder and Anxiety HappilyBlended

Aj came home from school after a weekend with his Dad acting absolutely out of his mind. I could not get a handle on him and had to restrain him in a basket hold multiple times. Mind you, my son is 53″ tall and 99lbs, I am 66″ tall and 220lbs. My strength is gone because I haven’t been working out and I am not quite tall enough to get the proper grip on his legs with my legs during these restraints, it literally takes every ounce of my energy to keep this child restrained properly until he has moved to a calm state of mind. Later on that day I found out that Aj hadn’t gone to bed the night before at his Dads home until 9pm, which is too late for my son to be sleeping on a school night. Without sleep, this is what happens — Aj is irritable, out of control and has to be restrained frequently. It’s a nightmare to say the least.

Tuesday came along and Aj didn’t sleep very well the night before, I was starting to get nervous, but there was a snow day and other kids were getting sick so we stayed home for the half day of school that was called. I had a great day with Aj on this particular day. Very minimal issues and he even served a time out without having to be restrained. Progress!

Raising My Son - Mood Disorder and Anxiety HappilyBlended

As of this date I am typing this, February 20th, Aj is now taking to time outs without restraining, he has reluctantly accepted a time out and I have not had to restrain him since the Monday prior to this date. The home front is doing better as far as symptoms of Aj, he is having a hyper manic style bipolar episode these past couple of days but I will take it, it’s better than irritability.  I did, however, receive a phone call from the school nurse at end of school about Aj’s behavior in school that day. Apparently Aj was irritable, having odd body movements, very itchy and fidgety all day long. Aj was unable to focus and was rather bouncy. I replied to the nurse, “welcome to what I live with. This is Aj not on medication and this is the real Aj”.  I am not trying to make light of how my son is but in all reality there is little that can be done until we start seeing the new psychiatrist, the prior one was an intern and has left that facility, since Aj is seeing a new pysch in the beginning of March there is no point in setting him up at the old facility with a new person. So we wait. We watch. We communicate with the school and we make sure to stay strong to keep those learned behaviors nipped in the butt!

Oh … and we love Aj with all of our hearts, that goes a long way to make a kid struggling feel more secure!

When Certain Things are Out of your Control

I lead a very happy life, there is a lot of situations that occur and I just shake my head, realize I can’t control it and to just roll with the punches. The area that truly sucks for me, as a mother, that I have zero control over is getting a psychiatrist to realize what the counselor and my own self realize about my middle child. We have gone through so much with Aj, he is such a bright sweet caring compassionate child but he suffers from something that is, also, out of his control. This something is called a mood disorder that is reminiscent of bipolar disorder, not fun at all.

Seven Year old Son Proud of his PizzaWith getting a diagnosis of ADHD and then finally the pysch realized he has a mood disorder, Aj has tested out a variety of medications for the past few years. As of January 20th, the current psychiatrist has had him on no medications. I will say I have been having fun observing my child but right now is time for some medication plan to be in effect, but the psychiatrist is not calling me back. I have left three messages as of February 10th to this woman, who by the way is a “fellow” in a fellowship, not an actual full time pediatric psychiatrist which is frustrating in itself. There are many things I have noted with my son that just made me realize he does need medication, sadly, my sons condition is not something I, nor he, can control.

As a way to journal my experiences with Aj no longer on medications, I wanted to write a blog post, so that anyone out there dealing with a special needs child can know they are not alone and maybe there are some who can lend me more tips on coping and relieving the tension that comes from parenting a child who has special needs.

Week One – January 20th Starts No Medication

Aj gets a bug going around, not sure what virus it is but the rest of us (aside from my fiance) ended up with strep. Aj happened to get on antibiotics due to fluid leaking from his ears, two days before the rest of us got diagnosed with strep throat. Aj spent time missing school and sleeping 13-14 hours at a time. This was a decent week, no real situations to report because he was sick so that meant he was pretty laid back and easy going.

Week Two – No medications and No Sickies

There were some days of no school due to the scheduling of our school administration unit so Aj wasn’t having too many demands placed on him just yet. Aj did okay and seemed to really only have adverse moods that were ignited by something not going “as he had planned it go to”. One thing about Aj is that he is an extremely, over the top, routine driven child. Everything in Aj’s world must go exactly the same way every day or as he has it planned to go in his mind, if one thing doesn’t go that route, even if he is given enough insight that things are going to happen this way, he just cannot handle it and is thrown into a fit of frustration, anger, or tears. The response of Aj used to be of pure rage but these days you can see anything from a 2 year old style tantrum on the floor to running off to cry in his bedroom or a secluded area of the home when frustrated. This particular week, myself and his father at his home really saw the side of Aj that doesn’t do well with things not going as he planned.

iGami Cheap FunWeek Three – No Medications and Hello Bipolar

This week was rough, not only were we seeing Aj exhibit his normal frustrations with things not going as he had planned in his mind but his mood disorder really started to shine through. This made me sad, disappointed and just so out of control of my own child. I am blessed to have worked and currently work with an amazing counselor who has given us the tools to parent Aj, not to mention I am really good with instinctively parenting my children. One thing that I was reminded of this week is that I have to remain in control of my tone, Aj is sensitive to what tone you use. I am not kidding. It is extremely bad, for example if you say “what” to him when he says your name and that “what” wasn’t in an approved tone type of Aj he will not say what he has to say until you get the tone right. I played that game until I realized there was no way my tone would be approved by Aj this week, he simply was beyond irritable and there was no getting him to act normal. I use the term normal lightly. Most of this week Three and the weekend was spent trying to keep my own frustration down while still ensuring rules were followed with the up and down moods of my son. This week was not only rough, but more so a nightmare that spiraled downward.

Week Four – No Medications and Trying to Reach Pyshiatrist

As I write this, we are now in week four which is this current week we are in. I cannot give much of an update because it’s only Monday that I am writing to schedule this for later publication on site. I can say this; I left a voice-mail for his current pysch and left a message for his upcoming new pysch. The new pysch called me back as of the time I am writing this and has penciled Aj in for an earlier appointment, earlier as in 20 days before the one they had previously schedule his new patient visit for. That’s 20 less days of watching my son fall apart uncontrollably, it’s better than nothing.

A mother and her two sonsMy Wish for Aj and His World He Lives In

I wish for more people to have compassion for bipolar people. Sadly I see far too often that many tell me “well it’s just behavioral, you aren’t strict enough” or “he doesn’t need medication, he needs a firm slap on the butt”. I mean, seriously, I am so sick of everyone who doesn’t live this telling me what to do. I don’t mind those who deal with similar instances who want to lend me tips on how they survive parenting a child like this; one who has anxiety, a mood disorder and some ways that fall under the autism spectrum. I am not talking to other people, sharing stuff on Facebook or on my blog post to have people give me answers or tell me how to parent, I am sharing because this is my community that I reach out to for support, advice and love. I do that for others and only expect that in return. I hope that Aj can get moving forward soon, before it messes with his schooling, right now I am simply thankful that the situation is not affecting Aj’s grades. I just hope he doesn’t have to suffer for much longer and can get on proper medication to lead his happy life that he had many years ago when they placed him on a drug that worked awesome but sadly made him gain too much weight so it’s not an option for him to take that anymore for health reasons.

I just want my son live … freely, happily and steadily.

 

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