Me

Me! I wanted to just discussed where I am at this point in my life.

I started a new position at work which has taken me out of my comfort zone. See I have worked with kids pretty much my whole life and I was a good daycare director but I realize that it was redundant. I loved the people I loved what I did but I hated the fact that it was a gerbil wheel and every day, day in and day out I felt like I was doing the same thing. So I took a job at a non profit which was scary, I worried that I would not be good enough or be good at it. It offered me the chance to work from home and a flexible schedule which was something that I wanted because I wanted to be home with my kids more. But now that I am home, I find that I work later hours due to having to pick up kids and now that I am home the kids are asking so much of me. It is hard for me to find a balance in this. I told myself that no matter what I would give this job at least a year because I need to know all aspects of it to know what I want to do next, to walk away prematurely would do me more harm than good (For me). This new job is pushing me, I see that I still love helping people and I am seeing how different people in the field of case management and different state and local agencies operate, it’s really eye opening.

I’ve been reading this book that my therapist recommended, “On Purpose’’ couple that with the last few episodes of Insecure it has me thinking a lot about my choices. My choices! My choices weather people agree with them or not are my choices and maybe because I am about to turn 40.. which will be it’s own post. But I have been re-evaluating my life and the choices that I have and continue to make over the years, some where so stupid and so unwise while others were no brainers. Some the consequences will stay with me others will be the lesson I needed to learn.

There are things I am still trying to figure out, I do not think I really know what I want to be when I grow up, I just know it will involve helping people in some way. That has always been my goal even when I was small. I don’t know where life will lead me next or what decisions that I will make that will alter my whole life…yikes! But I am happy that I have people around me that will help and will walk with me not judge me, I have people who I can bounce ideas off of and tell me or show me a different way of doing things. I think sometimes we feel like we have to do this thing by ourselves but it’s nice to have someone or people to help carry the load.

2022

So it’s 2022 and I realized I haven’t written anything in a year. So I decided to do a year in review lol.. When I set out to start this blog my goal was to do it weekly and lately that’s not what’s been happening (obviously) life took over hard and fast.

DJ whom is now 16 is a different person. Teenage DJ is different, I miss my “talkative” always smiling little boy who always wanted to be around me. Now, he rather be in his room smiles whenever I feel like he’s just over everyone half the time. We have been seeing doctors over seizures. I feel like the doctors think I am crazy, but I don’t care I have to advocate for my child. I know something is off and something isn’t adding up. I’ve requested test and did shed some light on what’s going on but at this point I think I need to get fresh eyes on the case to see if there is anything else going on. He has recently started acting like his old self but I do not think he will ever be my baby DJ. He is growing up and I am so not here for it. But, if you know DJ he’s DJ he has this smile that makes you smile, his laugh makes you laugh, he’s perfect.

Delsie is now 17 and is applying to collages (Well really just one….I know). Saying it hurts.. My baby won’t be a baby any more. She is my first born and the thought of her experiencing life and being a grown up is not it. I remember being pregnant with her and holding her when she was born and just watching her grow up, in my mind we never got to this point and here we are. I’ve always told her that she has to leave to go to collage. We have an amazing relationship and our family is really close. As much as I would love for her to be home, I need her to figure out who she is without the other kids around. She is so use to being “DJ’s Big sister” which she absolutely wears as a badge of honor, I need her just to be Delsie with no strings attached. She is currently in therapy due to mental health stuff (with her permission maybe I can get more in depth) but she is thriving and doing what she needs to do.

Karie is 12 and is tall which by the way he is loving. Grant it I am only “5-2” and he is about “5-4”/ “5-5”. He is uber smart and I realized with him that I was projecting my thoughts about who he should be on him, and not allowing him to be who he wants to be. He’s a smart kid and I always said like you should be a engineer. He followed suit and would say I want to be an engineer, at some point I realized that, that is not what he wants to do, he only said that because I said it to him. He really wants to do anime. Which I knew he was into but he loves it and we are going to support whatever it is he wants to do. I’ve always told my kids, I have paid my dues and have made my choices, you have to do what’s best for you. I was not allowing him to do that by making that choice for him, he’s great at drawling, he is way more than capable of doing it and we will be rooting for him. He is also doing well on his seizure medication we haven’t seen one since the last one a couple years ago. Our relationship is great, we have gotten closer, maturity has hit him over the head a couple of times (Thank God) and overall we are excited about what’s next.

Ms. Paige is Ms. Paige she is now 5 in kindergarten. I can’t believe I have a senior and a kindergartener. But she is the actress of our family. I cannot wait to see who she becomes because her personality is big! She does things for laughs while staying true to herself. When she started school I would ask her if she made friends she would say “no” and I would ask who did she sit with and talk to at lunch she said no one, and I would say are you sad about it or are you okay with sitting by yourself and she would say, “I am fine by myself” So I wouldn’t bother her about it. She is okay not to hang around other people and be by herself. ( She does have friends and sit with other people now because she wants to not because it was forced) We are currently learning to read which can be frustrating because you’re trying to make it fun but you’re also like, THE CAT IN THE HAT! Like ma’am these are your sight words! We will get there eventually.

So now what…..

From 2021…

From my other post we talked about how DJ was having issues and we had to get a 24 hour eeg. So we finally went to the dr and he is now on medication for seizures which is something I really wasn’t expecting. And to help with his mood. Lets talk about my dear DJ and his mood. DJ has been what I am now thinking is tantrum. He wants people to do what he wants when he wants, which is not working in his favor. At one point he only wanted Anthony (Padre) and now he’s on to his little brother. It has been very stressful in the house and now we have a therapist.

I never knew they had therapist for children with special needs. So we have one and it is still not easy. I do not think she knew how to work with with him. So we got another therapist who have worked with special needs kids he was working out okay, DJ was not interested in having someone with him and spent most of his time running back into bed. We than got a behaviorist whom also has worked with special needs kids. DJ again was not interested in her and activities. So, she decided to take him to the park to get him out the house, it kinda worked but he was not progressing nor really participating, so we ended that too. Now we have nothing. He has stopped crying witch is great but we are still struggling. My daughter thinks that he may have anxiety and/or depression which I never really thought was a thing that special needs kids get. I am naïve to think that he couldn’t. I guess I have to figure out how to get that checked out. He is just to himself lately. He has gone back to school to see if that will change anything and it has a little. I am sure he did not like being home and having to wait until I got home to do his school work. His teachers see the change and I feel bad that he is not himself anymore and I have no idea how to help the situation.

So today….

So today started off a normal day. I told him we were getting ready for his shower and that became a meltdown. Now I am pretty use to it by now and I normally just try to give him what he wants. But today I realized he’s about to be 15.

He was upset because he wanted a certain pair of shorts, the shorts he took off are the ones he wishes to put back on. I had enough. I realized that me giving in all the time created this. Yes, I understand he’s can be attached to things but this time I couldn’t do it. I feel like with everything I say okay and buy a lot of the same thing or try to wash the one thing he always wants to wear.

Today I said, “No, You have a lot of shorts please go find another pair.” That did not go well, he cried.. a lot. My oldest daughter after 5 mins ran in his room to try to help him find what he wanted but he didn’t want any of 8 pair of shorts that he had. He wanted the blue ones. He soon cried and folded his arms. That’s when I realized, this wasn’t a meltdown, he’s having a tantrum. (Que mommy is now looking at him crazy) I am like are you serious right now, he looked at me and cried some more. It ended with my daughter finding black shorts that didn’t have string on the outside.

For us I think I shouldn’t have let this part drag out for so long. I need him to understand that you may not get what you want all the time. I cannot keep buying 5/7 pair of the same thing so you don’t flip out. Just like before, he would wear jeans, then it went to sweatpants, then joggers and now we are on to other pants. Which is fine in some regards because he is expressing himself and he is 15 but to me sometimes he takes things to far. I did not think that this late in the game he would throw tantrums, but here we are. This parenting thing, doesn’t seem to be getting easier. I guess we should just hold on and enjoy the ride.

What Happened…..

So the past few months have been uberly crazy. It started when I was talking to my oldest daughter and she said that DJ is freaking her out. I am like well what is he doing and she’s like he’s talking to nothing. so now I am thinking I need to talk to my friend or call a pastor to get whatever out of my house (which is still an option at this point). So my daughter and I continued to talk about what he was doing and I started thinking about how he has been staring off and I am like dang, I don’t even know how to find out if something is really wrong, considering DJ isn’t talking. So I call the Dr. anyway to see if she had insight, or if there was something that she could recommend or just that I needed to get some spirit out of my house. We talked about the things that I was seeing and she informed me that it could actually be staring seizures.

So now I am freaked out because at this point my other son (11) was having seizures at one point and is on medication and we are still dealing with all of this. So to hear that we may have another one, was very overwhelming. I was able to get him an appointment with the neurologist like the next week which is crazy fast. While there I found out he had an eeg there before.. Thank God for records… I didn’t remember. ( I was pregnant and going through the second biggest life change of my life) So yeah. We discuss the next steps and what we were going to do next. So now we are waiting for the next part of the test.

Life seems to have gotten real stressful, not knowing what the next move is going to be. I’ve always said that once your child is about 7/8. It pretty easy because you already of the services in place your child has things set, I was so wrong. I am actually finding it hard to help him. Because I do not know how to help. Sometimes, he doesn’t respond to yes or no questions, sometimes he just cries and now, I have no idea what he’s really dealing with.

boys….

So how come no one told me how hard it is to get boys to do what you need them to do? I swear my girls just get it done. These boys are so different. My 11 year old is the reason I have gray hair I am totally convinced. He just wants to do his own thing, I just cannot wait for maturity to smack him in the face! I’ve talked to other mom’s of boys around that age and yeah, it seems to be the growing trend.

And my dear DJ is working on showering himself. And it’s hard. I find myself just doing it for him because he takes so long and does nothing. I told him what to do and left I came back and he was sitting thing under the shower chillin. I was like, “ DJ you done?” His response, “Yes!” Dude the front of you is still dry…. how are you done? And I end up staying in the bathroom watching him and directing him to do it. Brushing his teeth is also a thing he rather me do then him. I just don’t know how to break him of these habits.

My friend (old roommate) told me not to spoil him, I thought no I am treating him like everyone else. But now I realize that maybe I should’ve done somethings differently with him. DJ is way capable of brushing and washing, but he is so use to mommy doing it and would rather half do it so I can just do it for him. I find my self just saying DJ you have to do it and walking away or watching, but it’s not that great when he does it sooo I find myself in a dilemma as to what to do. I know not to put pressure on him, but I kinda do not want to be in my 60’s still washing and brushing this kid teeth either. Another special needs mom told me her son just one day decided that he didn’t want her to do it and from that moment on he did everything by himself. She told me to be patient… that was about 4 years ago, I am still waiting, full of hope that one day he will.

So umm…

Lately I have been having a hard time balancing work and home life. I feel like I give my job my all and my family gets whatever is left, which isn’t the best idea. I recently read something that hit me hard. It said, “Work will replace you but home can’t”. That hit me that maybe I need to figure out my life a little differently. My husband and my kids need me way more then my job ever will, has me thinking about my priorities and how I need to change them. I have to be on a different schedule to be able to give my kids what they need. I realize that my kids are not going to be home for long. My oldest is ditching us and going off to collage (I always tease her that she’s ditching us) in 2 years. Her and I have been through a lot together we have a special relationship, as I do with all my kids they bring out a different side of me and they all saved me, taught me something different about myself. She like my little best friend. Believe me there is a line drawn in the sand and she knows not to cross it, but we talk about any and everything and she is about to be a grown up and do her own thing. Very scary time to watch my baby leave home. (I am so not ready )

So because my life right now is crazy I decided to send DJ back to school. Because I am not home with him I find that doing work at 7 and 8 are not good for either of us. He right now is thrown off his sleep schedule and I hear him wondering the house at all times of night (probably taking snacks) and yes we have an alarm just in case he decides to be bold, but I don’t think he will tho. He doesn’t get speech at home and any of the other services that are offered in school. So I had to make the tough decision to let him go back. He doesn’t of course want to because his other siblings are home but his has to be done.

Being a parent means having to do the things you may not want to do for the greater good of the house/kids. Even if you don’t like the idea of it. Believe me I don’t like the idea of a lot of stuff but it still has to be done for the sake of the “team”. I think like most parents wish they could keep their kids home forever. (now I know how my parents felt, and it kind of sucks) Kids are the priority until they are out the house, I am not sure how long I will have DJ, meaning if he is going to live with me forever or if he is going to want to do his own thing and want an apartment. (God being a parent is hard) But whatever he/we decide it will be what is best in the long run.

Virtual School

So we decided that doing virtual was the best move for DJ. Still not sure how confident I am with that answer. As I said in the last post, we felt like because of who he is and he likes to roam the classroom and talk to his friends and he drools more with the mask so we decided to keep him home. So after I get off of work (5:00) I am home and making sure the house is good, making sure everyone ate, showers etc. DJ and I sit and do work, his teacher gratefully records the zooms for him because he cannot make the live one. Which right now would be a waste. We did a “ meet and greet” via zoom for the class and DJ hid behind his bear and refused to be apart. So we are going to have to do this slowly. We do the zoom meeting then do whatever work he has to do. So far so good….grant it, it’s only been a week. (fingers crossed) We will soon graduate to only his teacher or aide then the whole class.

I am not certain that DJ even wants to go back to school. I think he’s enjoying the fact that he gets to be home with his brother and sister and get to run after the dog all day. But we will continue till we think it’s okay. It’s alot of work on this end of things because my husband works all day and goes to school at night so things can be a bit hectic. The show must go on.

We do things that benefit our children despite what it means for us. As parents we put their needs before our own. and I realize that this isn’t forever and this doesn’t last always. DJ seems more receptive this time around as appose to the March through June school days. So I’ll take that because it was rough.

What are we going to do?

So in light of the new rules in the school districts. We have to make a decision as to what we are going to do with DJ. They originally sent a 75 page report. 75 pages! Ummm no thanks, I am sooo not reading all of that. I skimmed it, basically 2 days on and 2 days off and children will be encouraged to wear mask. ( as of 8/25-4 days a week)
We had to make a decision based off of what would be best for DJ, not our convenience. See I am still working and so is my husband ( he never stopped I had like 6 weeks off) it was rough trying to convince DJ to do his work with me.
So after I read mask would be encouraged I realized he needed to stay home. I think it would be hard for them to keep it on. And I see how Dj is and for him to have the option he would take it off more often then not. Him being home will be rough because after I get off of work I am going to be doing the convincing. And getting his work done. I told him he will stay home for one marking period just to make sure everything is good then he would be able to return.
As parents we need to do what’s best for our children. Weather it’s them going to school or staying home. Only you can decided what’s works best for your family. Don’t let people shame you either way. You know the risk of both and whatever you choose you choose because that’s what your child needs.

Teachers

I would honestly say DJ had the best teachers and aides. Throughout all his schooling I think it was only one teacher that was my favorite. Dj just started school (3) and we had just moved this one teacher refused to call him DJ and said that’s not his name and only called him by his real name. She said, “ he needs to know his name”. I said, “it’s his dads name and no one in the house calls him that”. And I didn’t agree totally with how things were going. And was glad it was over. His other teachers/aides from the four year old program till now are nothing sort of amazing. ( no one really calls him by his real name)

I thought about going into the field at one point and I realized that I can deal with my child. And not everyone is like DJ, so I had to reevaluate my goals. The patience these teachers and aides have, is something that needs to be commended.

I remember we moved to a different district and they ended up putting him back. I cried, I didn’t know my rights and after the fact someone said no the iep should be tailored to him. His old teacher was really mad because she said he knew the info and she didn’t understand why they did that. But in the mist of all of that he got into a amazing program where the teaching staff was right for him.

To me the teaching staff are his other family, ( I still keep in touch with most of the teaching staff he has had) they spend so much time with him, they are able to push him to limits that I never knew he could do. His kindergarten aide which was a male actually helped him to potty train. I remember him because he had a disability too.

It’s so important to be involved in your child’s education, the teachers( in my case) had my back, and if it’s not a good fit you have to say something. If your child isn’t getting what they are suppose to from their iep, due to the district not being able to provide, the district has to send you somewhere else. Your child deserves the best education.

What’s Wrong!?

I think the hardest part about having a non verbal child… well maybe not the hardest but it’s in my top 3. One of the hardest thing is the obvious, he’s non verbal. Although he can say a few words and we do a lot of yes and no questions (because he understands) it’s hard. We go through the normal list of things when he’s upset but when it’s more than that it sucks.

As a parent not knowing what your child wants and how to help them sucks. DJ has been recently crying and he doesn’t want to use his device ( I call it his talker). He’s been sitting on the floor just crying. I am going through the list, “are you hurt?” “Are you sad?” “Are you hungry?” Just to try to help me help him. He has been coming into my room laying on me and just resting. But leaves and is upset all over again. I had nothing left and it hit me, “ is it to many people in the house?” He says, “yes.” 

I am like Thank God now I can at least fix what’s wrong. See my sister in law is up from out of town and she has two of her kids here. So my house in general, is loud and we allow our kids to be kids so at any given moment there is someone running around the island or the dog barking because she wants attention, tv’s are on and loud, kids yelling at each other, just life is always happening. And now there are more ppl in “his space.” We were able to convince him to go in the basement with the dog and his brother because it’s quiet. He stopped crying and was happy as if nothing happened. 

I looked into him being over stimulated and I believe that was the problem. It’s too much going on in the house. I also saw that some kids throw tantrums because of it too. There maybe a reason some kids are acting out after large events and we as adults need to step back and look deeper into it. 

Paying me?

When having a child that’s has special needs you can be eligible to receive SSI- Disability. I was told about this service and I was really hesitant to take it. I felt like why am I taking money from someone who is giving me money because I kept my child. I had a hard time with this. I felt like this was a decision I made and your going to pay me?

I had a hard time excepting DJ’s diagnoses because I just saw him as DJ nothing more nothing less. He was my calm child he loved to laugh and his laughter could make you laugh, he was just a joy. And to think that he won’t be totally like his sister was hard for me. I didn’t know what the future held and I was concerned about how his life would turn out.

At some point I applied and actually got it, I couldn’t believe it. I decided to apply for it after a talk with my parents who told me that it can help me down the line, which indeed it did. I was newly separated, and literally just had a baby and had no income. So the money really came in handy, I was able to put DJ in an outpatient speech therapy, he did music class and whatever else they wanted to do. I was totally worth it in the long run.

Services are there there to be used. They are their to help you on this journey. If you are able to qualify for anything take it. In the long run you are supporting your child in exposing them to other things that you may not had been able to otherwise afford.

Quarantine Life

So during this time of being in the house DJ and I are having a bit of a struggle with doing work. He isn’t use to me telling him school work has to be done with what seems like a summer break. He doesn’t care that his siblings are doing work he just wants to be the typical teenage boy, sleep in, eat cereal, watch t.v and play video games. ( yay me)

So I came up with a plan to do school work one day and computer work another so he doesn’t have to “deal” with me helping with homework. And that isn’t working so great either, he takes my lab top in his room and turns to you tube or plays games. DJ-2 mommy -0.

To say we are struggling a bit is an understatement. Between all the emails I get from his school and me having to work from home while making sure the others are getting their homework done. It gets to be alot. But, I get to spend time with him and his siblings which I know will be a rare thing soon, their growing up and my oldest will be leaving for collage in a couple of years. We go on daily walks ( thanks to the 4 year old) and DJ loves walking Bella ( our new doggy family member ) and I get to see him laugh and smile with pure joy. Or going food shopping and him throwing his own stuff in the cart. I am honestly going to miss these moments when going back to work full time. Enjoy the time we have with our kids, it happens fast and in a blink of an eye their out the house. Which I am so not ready for. But stay strong my friends and as my mentor says, “ This to shall Pass.”

Independent

DJ is about to be 15 and he is not totally where he should be at this point. He goes to special needs school where he learns how to make his bed, vacuum, load and unload the dishwasher things like that. But, at this moment we are still struggling with brushing his teeth correctly, washing himself in the shower by himself. We do not trust him to cook dinner yet , he can although get dress by himself, put on his shoes and put stuff in the microwave . We recently had his IEP meeting and we were discussing him working when he turns 16. Can I be honest, I am so not ready for him to start working, I often think about what the world will do to him. When he’s home he’s protected and to think about him working not knowing if people will treat him right and understand him, will they tease him? And I won’t be able to protect him from any of it. I think about when I was in school and how people didn’t really have a great understanding of special needs children as they do today and how people made fun of other people and no one had empathy for people. To me at this point everyone should know someone with special needs, and I would love to believe that the world has changed, but as time goes on I just don’t know.

I always said that I would build some kind of small house for DJ in my backyard so he could have his space to do what he wants and be independent while I can keep an eye on him, but I often look at his 14 year old self and think he’s not ready but maybe it’s not him as much as it’s me not being ready to let him go. As a special needs parents we often have to think about the long run of things, we have to think about their future. What happens when we die? Who will take care of them? Should he go into a home? Decisions have to be made. I think this is the hard part. We need our children to be independent so that they do not totally rely on us because we aren’t going to live forever.

What ever decisions that are being made you have to have people in your corner to make sure your not being emotional about it and your doing what is best for your child(ren). This is very hard and scary as your child gets older because you face a different dynamic of the journey.

IEP Meetings

Oh, I hate the dreaded IEP (Individual Educational Plan) Meetings.  I remember attending them when DJ was 3 years old and crying.  Honestly, I think I cried after each IEP Meeting until DJ was 6 or 7 years old.  These meetings can be a hard dose of reality that, if you are not ready, can be overwhelming as negative assessments of what benchmarks your child is or is not meeting are discussed.  I understand that the professionals in the room (teachers; psychologists; counselors; and/or special education directors) have your child’s best interest at heart, but, the mere presence of so many voices deciding the future of your child is hard to sit through.  There was also the realization by me and the professionals that, perhaps, DJ was not meeting the standards like other children his age because his IEP was not correct to meet DJ’s abilities and needed to be adjusted.  

IEP Meetings are the time for you to communicate how you feel about your child’s education and progress in the classroom.  It is also the opportunity to express what is or is not working for your child.  It is my push to all parents who go through this process to speak up.  If you don’t understand something, then say so.  It is your child’s teacher; the social worker; and all others present in the room job to make sure your child is getting the education they deserve.  It may feel uncomfortable, but you must be present (physically and mentally) to represent for your child.  If you need help speaking out, there are special needs advocates who will attend these meetings with you to assure that you are being heard and will work on your behalf.  

I personally tell people that the beginning is always rough when it comes to IEP Meetings because you are trying to figure out what works or what needs to be changed or totally deleted from your child’s plan.  It may be hard and a little intimidating questioning and asking for explanations from those present in the room, but you are there for your child.  You are your child’s voice.  So, speak up!

Telling his Siblings

I remember being so concerned about explaining DJ’s special needs to his siblings.  I felt like his older sister, Delsie, already knew.  I just love their love.  She was always kind to him and helped him with everything.  Delsie was DJ’s protector and she wanted him to feel safe.  Delsie, without being asked, took on the responsibility of making sure DJ’s best interests were met.  So, I don’t remember having a sit-down, full blown conversation with Delsie.  She just knew and was aware of the therapy sessions; the school he attended; and all the meetings I attended for him.  Delsie just knew.

It was DJ’s younger brother by 4 years, Karie, that needed – and still needs – talks and reminders about DJ.  It is difficult for Karie to understand that there are some things that DJ just can’t do.  When they were smaller, I chose to potty train both DJ and Karie at the same time.  DJ was about 5 or 6 years old and wearing Pull-Ups.  The dual potty training wasn’t unusual as DJ and Karie have done everything together.  When Karie was 7 years old, I sat him down and said, “DJ has special needs.”  We talked about how DJ is nonverbal and that he would need extra help.  Kari had questions and we talked our way through it.  Now, at 10 years old, Karie asks, “Why can’t DJ wash the dishes?”; or “Why can’t DJ make his own stuff?”  Although DJ should be able to do some of those things, I just don’t trust him to do certain things yet. 

Karie sometimes says, “Mom, I feel like I am the older brother not DJ.”  I believe Karie’s feelings are valid because he, in some ways, has taken on the role of “little big brother.”  But I still tell Karie, “No.  DJ is still your older brother.”  Karie has a different type of relationship with DJ.  Karie loves DJ and won’t let anyone talk about his big brother.  They boys wrestle and play like any other brothers.  But, every now and again, I hear and see the weight of being the “little big brother” on Karie’s shoulders. 

My 4-year old, Paige, doesn’t quite understand what “special needs” means.  DJ loves Paige beyond words and playfully blames anything and everything that goes wrong on Paige.  She thinks DJ is her personal playdate.  Paige things its cool that they run around the house and play video games together.  DJ treats Paige like she’s the typical annoying little sister.  He pushes her and laughs at her silliness but, every night, DJ goes to Paige’s room to give her good night kisses . . . which Paige hates.  I am not certain at what point I will have the “conversation” with Paige or, if we will ever have it because maybe, like her big sister, Paige will get DJ without any explanation being necessary.  Only time will tell.

Every child is different and can, on their own, understand the special needs of others.  Those children just innately jump in and do whatever is needed to protect, nurture and love.  I am pretty lucky that my children love each other and take care of one another.  Yes, they fuss and yell but, there is a whole lot of laughter in our home too.

“Oh DJ”

DJ is helpful, funny, laid back, shy. He also loves to draw, and laugh. My life with him can be challenging, just like my life with my other children. To say that having a special needs child is always difficult would be wrong. I mean don’t get me wrong, there are days when we are both so frustrated that he’s crying and I am in my room debating if I want to cry too. Sometimes it’s hard when he’s crying and we are all trying to troubleshoot the “why”. I realize for him that he’s trying to get his point across and he can’t verbalize it.

There are days when things are calm and DJ is sitting on the couch cuddled up with Padre (my husband) on his tablet, or running around the house with his younger brother and sister, or him trying to convince his older sister to open that third snack behind my back. It seems that everyday when I say, “DJ, do you love me”? and he responds with, “NO! Paige” and I have to tickle him to say, “yes”.

Like any other teenager, he picks out his clothes and he has his own style. He, like other teens, only likes to wear certain types of pants although I am still trying to convince him to put on jeans but he’s not going for it. Lately, he has been wearing a hat with gloves around the house. I have decided that I am going to chalk that up to being a teenager because I have no other explanation.

In school DJ likes to hide behind things and try to scare his teachers. He likes to help the other kids in his class… especially the girls. At his dad and stepmom’s house he likes to chase the cat around and build with legos.

DJ has a tablet he uses to help with his verbal communication because he only says a few words but the problem is at home we are not consistent. Why? When he’s home we can normally figure out what he wants. Now that he’s “home schooled” I’ve been trying to use the tablet more, and he is not interested in doing so. (Insert frustration on my end).

My life can be what every other person experiences with their child. He’s a teenager trying to figure this all out too. DJ makes me sit and realize all the small moments are the big moments. I don’t know what the future holds for us, but we will figure it out like we do with everything…. Like a family.

Well this is My Life With DJ!

When I found out

When I found out that I was pregnant with DJ, my oldest child was 7 months old.  DJ was a welcomed surprise.  You see, I always wanted to have 3 kids and have them close in age.  My brother and I are 16 months apart and I loved the fact that we were so close . . . well, at times, LOL.  To have children close in age sounded like it would be a fun idea.  The pregnancy was going great.   In my 17th week, I was given the triple screen test.  It was with that test that my obstetrician knew that something was not right. 

 I was originally told that DJ may have Down Syndrome.  The doctor’s office called to ask if I wanted to abort the pregnancy.  Our answer was, “No!”  No matter what condition DJ would be born with, I was keeping him and will figure everything else out as I go along.  I was determined not to give up on my unborn child.   I prayed that DJ would not be like his sister who was totally hyperactive and had me running.  I prayed for a calm child.  God, thankfully, answered my prayers.

When DJ was born, he had extra digits, underdeveloped toenails, and a minor cleft lip.  There was no sign of Down Syndrome but the blood work indicated that a piece of two of his chromosomes broke off and reattached themselves to the opposite chromosomes.  DJ’s diagnosis was “balanced translocation.”  The doctors could not tell me what would happen moving forward and that we would all have to wait and see.

When DJ was 2 ½ years old, he was in an early intervention program because he was not talking like the other children his age.  I honestly blamed his big sister because she talked so much for herself and for DJ.  It was during the early intervention evaluation that I was told that DJ was developmentally and speech delayed.  So now, at the age of 14, DJ is non-verbal; he does not read; and is starting to write his own sentences. 

Having a child with special needs can be difficult.  There is frustration on both ends.   However, DJ has taught me to be the best me.  He shows me how to be excited about the little things in life.  When DJ says a new word or does something that he could not do before, I am overcome with joy.  Those seemingly little things mean so much.

If you have a child with special needs, you take things day-by-day.  Just know that you are your child’s advocate and know what is best for them.      

Welcome to my blog . . . My Life With DJ!