Enter the World of Meds

Not to long ago, we succumb to the idea that our son may need a little more help when it came to self control and impulsivity. We had done so much with Behavioral Therapy in hopes that it would help curve some of his maladaptive behaviors but then Early Autism Project just dropped him. The same therapy that is meant to work with and improve those behaviors, used his behavior as their excuse. It was repulsive really but while we were in search of a new ABA provider, we knew something needed to be done to keep him and others safe. Enter the world of Meds.

We met with his Behavior Pediatrician and discussed our  medication options. You may recall me discussing this in one of my other posts. I had genuine concerns about how the medication/s would affect him. My worry is that he could get worse, that the medications could mess around with his young developing mind or that it could be lethal. All reasonable thoughts and concerns. These medications are all stimulants and he is only five years old my feelings were legitimate.

The key for us is that he has a wonderful Behavioral Pediatrician who heard my concerns and understood E’s situation. She knew he was a very bright boy with a vivid imagination who often had sensory and major impulsivity issues that presented poor choice making and sometimes extreme aggression. I wanted to help my son before he hurt himself or someone else. He is super strong and I knew it was only a matter of time. So we agreed to try a drug that was a Non-stimulant first, Guinifance (Tenex). There were some risks involved as it had never been tested on a boy his age but they outweighed the other stimulant side effects so we started him on it right away. To start the dose would be very small, that would increase slowly but not exceed 5mls a day.

We slowly worked him up to 3.5 mls in the am which lasted 12 hours and a second dose of 2 mls once at home. He was showing signs that the medications were working. He was listening to instruction better and was taking naps right after school. However, problems started to present themselves in different ways. He now was falling asleep in class despite having a good nights rest and his blood pressure was a bit low at times. After meeting with doctor again, she decided it would be best to lower his meds. We then went from 3.5 mls in am and then no medication upon arrival home. Then a few weeks went by and he was still showing the same issues but then things managed to get way worse. The school nurse called me stating that he was cold outside but it was 90 degrees out. When they brought him in, he fell asleep and when she took his BP it was dangerously low. The school RN hydrated him, called the doctor and sent him home. The doctor immediately called me and told us to stop the medication all together. At this point, I had already decided this as well. I rather be dealing with the impulsivity and hyperactivity then risking his health or worse his life.

Now he is taking nothing prescribed but is doing a few things differently suggested by the Behavioral Pediatrician. He drinks a small bit of coffee with milk as it has a reverse affect on his hyperactivity. I am sure plenty of parents would be against this idea but I was fine with it. Culturally,  I grew up with a grandmother that gave us coffee and milk as small children so I see no harm in it.  The only issue is that I can’t give him that at school. So I will cross that bridge when we come to it.

We also tried Chamomile drops but it gave him a severe rash. Strangely, he doesn’t have the same reaction when he drinks the brewed tea. He took Genius Drops for focus and attention but that ironically made him more hyper. I have also started giving him vitamins with Omega’s to boost his neurological development. Normally, he refuses all vitamins especially the gummy type ones but he takes this liquid just fine. It is strawberry banana flavored and he and his siblings love it too. The entire family loves Barlean’s Omega-3, and it is highly recommended by our family. For everything else, the search goes on.


We are blessed for sure.

With love and dedication anything is possible!

Father’s Day

This past Sunday it was Father's day, and we spent the day with my dad. We surrounded him with lots of love, food, family and laughter.This year, I had such a hard time picking out a card for him. What kind of card could I find that would show how grateful I have been to have him in my life and thankful for all he has done for me. I figured he had seen his fair share of fart joke cards to last a lifetime and I wanted my words to mean something. So instead of a card, I’m writing this for him. 

Father's Day is that gentle reminder of just how much our dads mean to us. We are supposed to rush out  to the stores and buy them all kinds of “Hallmark” marketed items and this year I knew I needed to do more.

When I was Child, I adored my dad and as a teenager, I fought with him. As an adult, I was able to see my father differently, forgive his wrong doings and become friends with him. He may not realize it but within the past 6 years, he has become my best friend. He's the person I go to when I seek advice, comfort, media updates or just a good laugh. I like to think as an adult, I haven’t squandered a moment with him.

Now that he's reached his later years and is battling age and life,  I only hope that I can be the love and support that he needs because he has given that to me.

Dad when you read this, I hope you know just how much you mean to me, how much I love you, and how much my children love you. That you realize how grateful I am for all you have done for us. As my father you made sure that we always had a roof over our head and that we never went without. As a grandfather, you subbed in as a temporary dad when it was necessary and became my sons best friend too. My children love you so much and that fills my heart as I know it does yours. 

So to you dad, I'd like to say on this thanks for getting better with age. For always loving me even when I didn't appreciate what I had before me. For teaching me the love of baseball and that there was nothing wrong with having my own opinions. For helping me become the strong, independent woman I am today. For being my strength when I lacked it, the voice of reason when by temper got the best of me but most of all, for becoming my friend.

I love you dad!!

https://photos.app.goo.gl/EACREYCetvUzvEpF8

We are blessed for sure.

With love and dedication anything is possible!

Losing my help

It has always been so hard for me to let strangers into my home to provide therapies to my son. Obviously I had to be okay with it, he needed the help.  Bedtime became a juggling routine with the three kids all demanding my time. Shower time was easy, I took away baths and put in place a shower routine. Bath times are now special and mostly on weekends.  The running room from to room trying to read and tuck them into bed was still an issue. When I was at my highest point of stress, I surrendered to the idea that I needed an Aide to help us along, especially at bedtime.

Many came and went. One lady actually yelled at my son, in front of me, the first day she started. I was like “Hey NO! GOODBYE!” She was gone before she even really started. We just couldn’t find the right fit until a young girl by the name Holly came to us. She had the right energy and the best attitude to deal with him. She was a Godsend to us. She worked with us until very recently and became a part of the family. She lasted nearly a year before the commute and lack of pay became to much. She told me that she couldn’t continue and I understood though I was devastated. My son loves her, how could I not be. The argument she laid before me made sense. She already had a day job and the night job was just intended to be extra money that was now burning up her funds. It no longer made sense for her. So we said our good-byes for now and try to move on.

We brought in another aide and E really liked her. She was older and a mom with boys so she was able to keep up with the chaos my house can sometime run under. Only 4 days in and she tells me she will not be returning. I asked her did Ethan do something to upset you, was there something she felt she couldn’t deal with? The aide simply told me that this was a secondary job for her and that it was costing her more in gas then she was bringing in. So that was that, we once again were without an aide based on salary & expense. I’m really surprised how these agencies don’t reimburse at least some of the gas expense. If they had done that, it would have made all the difference for us.

We have been through a great deal of aides either because of personal chemistry between my son and them or salary/travel expenses. Now the summer is here and I have no one to assist Us. I’ve gone back to being unable to cook dinner and the crazy of bedtime routine is reaching melting point. I often feel guilty if I don’t get a chance to read to each of them. I have tried to read one book to all three at a time but since they are all at different reading levels, it presents its challenges. Also, its the time of day that I like to catch up on the kids day. Discuss privately any issues they may be having or just give that little extra time one on one. Often, I feel like a horrible mom when someone falls asleep before I am even able to give a kiss goodnight.  It’s clear to me I need a better system. It’s a challenge, I have always loved a good challenge so I have confidence I will figure it out...eventually. In the meantime, the hunt for the “Right” health aide to assist us is on.

Wish us luck.


We are blessed for sure.

With love and dedication anything is possible!

Fight to be heard!

There is nothing more frustrating in my experience then when you are telling someone what would work best for your child and they don't listen. The experts think that they know best and you are left struggling to follow along or fight to be heard.

This was happening with my son, E. He recently moved to a new school because I felt he wasn't being treated correctly at the prior school. That they kept stuffing him into a room and not taking the time to hear him. They simply muffled his voice when all he wanted was for someone to hear him and talk to him. Whatever attempts the teacher and administration made only seemed to make things worse. Suddenly he wasn't trusting people, responding as if he was going to be grabbed or hit if you approached him to abruptly. I was angry and motivated to help him.

Every day we received either a phone call or a message about his unwanted, negative behavior. Though I welcome communication from the teacher and the school whether it be positive or negative, it was almost always, negative. I could handle the negative if there was an attempt at a solution but by the end, I saw nothing. I just wish they were making the effort to hear him out.

At the new school, he is making amazing strides and catching up to where he needed to be quite quickly. Honestly, we knew he had it in him and were so frustrated with the system, that we nearly gave up on the system and took him out of public school. It wasn’t only because I went and spoke to the district that we now see change...change came because those at district level are truly impassioned by the children they serve. The new teacher has taken it upon herself to really pay attention to E. Taking the time to figure out how he thinks as an individual. She often tells me about the funny things he has said throughout the day or about the things that upset him. The principal is always engaged with his class and is learning how each child in that classroom functions. Despite some difficult days, he is transitioning superbly and is happy to go to school.

All of this is happening because someone took the time to listen. People are taking a moment to listen to my son and not force him to do something he doesn’t understand. This willingness and patience to talk it through or just listen, is what is helping the most. Finding the right people that care enough to help us was key, the district did that for us and for that I am forever grateful.

Now he is showing all his potential. For Down Syndrome day he introduced his little classmate and then closed the presentation. He said to me that he was going to say a speech for his friend Ari. It melted my heart that he said "his friend" and that he was so motivated to celebrate her. This is all thanks to the school. They gave him a place where he can be himself. That feeling of acceptance is helping him have the confidence he needed to start on a path of doing great things.

He still has his days, but no where near as bad as the last school. Parents, don't forget how important it is to be the voice for your child(ren) especially for those that are unable to verbally express their feelings. Whenever possible teach them that their feelings, needs and thoughts matter. That being  shoved into a room and closing the door behind them isn’t solving a problem, it is only masking it. Don’t be scared to voice your opinions or to stand up for your child. Advocacy should always start at home.

We are blessed for sure.

With love and dedication anything is possible!

Seeing the changes

Some of my readers know, I have been struggling with my youngest son, E and his school. We felt as though he was not receiving the proper education he deserved or that he was being treated improperly. Not abuse, but lack of skill, knowledge and passion still made it traumatic. Socially and academically he was not thriving in his school. He hated going. Being constantly shoved in a "Quiet Room" did NOT exactly help build a strong bond with the teacher and the room assistants, as well as the school administration.

We were constantly getting calls from the school about his behaviors but we assumed he was getting some work done. To the point that when the phone rang, my husband and I would immediately stress out. The teacher never communicated enough with us about how we can advance him academically or even with the specifics to what they were dealing with unless it was related to negative behaviors. I was always the one asking for homework or for insight on his day. Communications were only about his behavior through app messaging (requested by me) or mandatory paperwork. The avoidance got to be so much in the classroom that my son wasn't learning at all. However, I didn't know this until the 3rd quarter progress report came in. We just assumed he was getting some of the work done. Six months had past and he was losing all that he had gained.

Very quickly, I made an appointment to speak with the school principal to discuss my concerns and she seemed shocked that I was complaining about the teacher and that my child with said teacher was not thriving. Believe it or not, she then told me, I wasn't the only parent with this concern and she isn't exactly aware of what is going on in that classroom. She said she was "in the dark." THE PRINCIPAL. She said she would get back to me. Could you imagine? It felt as though she was blowing me off. I left that meeting with such frustration and anger about the lack of passion she showed that I put a call into the school district.

Finally, the staff in special services at the district office came through for us, removed him from the school and transferred him to another. We were so happy about this. I believe my son suffered some level of trauma while in their care, which built distrust with those from that school. They weren't going to get anything accomplished with him. The move gave us hope that with a new slate, E could finally begin to learn and to love learning. Only a few weeks in and we can already see some positive changes. The teacher communicates regularly with us. Shares not just the failures of the day but also his successes. E shares with us small details of his day in a positive light.

The other night E was using a small learn and play computer, he said he was doing "Homework". He was getting the answers right and asking for help when he was not sure. I was so proud of him. Then to my surprise, he asked for a desk so that he could do more homework. I mentioned to him that in order to do that, I would have to get rid of his Rocket tent and asked if he was really okay with that. E loves this tent. There are nights he prefers to sleep in the tent versus his own comfy bed. So when he said "yes" I cried because that was his way of letting me know, he is enjoying learning.

Don't get me wrong,I know the E still has a long way to go. We are still dealing with behaviors but he is working through them. He is capable. For him to be in the care of others who believe in his potential, who have the training and passion to help him achieve all that he is capable of, well that is just like bringing sight to a blind man. We can't wait to see what is to come.

We are blessed for sure.

With love and dedication anything is possible!