A Must Read for Parents of Children with Special Needs

I am going to take a moment to tell my handful of followers about a book that I found to be more than worth reading. If you have a child with special needs, seen or unseen, or if you know someone that has a child with special needs, this book is definitely something you should investigate. It helps you, as a parent, work through your emotions, validate your feelings and find your way in a world full of people that just do not understand.

The book is called “Beyond the Diagnosis: The Path to Thriving as a Special Needs Parent,” and is written by Amy Mattson. It is now available on various sites, including Amazon and Barnes & Noble. 

“Beyond the Diagnosis” took me on a journey that left me in tears. Not only did I empathize with the author, but I recognized myself in her words. Years of struggling with the stigma and the skepticism of others over the unseen diagnoses of my children had left me with huge feelings of self-doubt and anxiety over each decision that I made, each choice that I carefully pondered and made with as much information as I could with their best interests at heart.

I learned that I had never really grieved the diagnoses of my children and that not only is it okay to do so, but it is also a part of learning to thrive in the life that God has graciously presented me with. I also learned that it is okay to feel anger over the cards that your children have been dealt, and then to feel guilt over that anger. Knowing that I am not the only one that struggles with the myriad of emotions that you navigate from diagnoses to coping to thriving left me feeling like my emotions were valid for the first time in a very long time.

The author takes you on a very candid journey through her emotions – the shock, the guilt, the anger, the depression and then her uplifting journey as she learned to thrive. She discusses her struggles with anxiety, with coping, with lost friendships and community isolation. Working through the activities helped me find what works for my little family, and how we can find ways to thrive, even in a one-parent household.

This book is a MUST READ for parents of children with special needs, and it wouldn’t hurt to hand a copy to those in your life that may not understand what it is like to parent a child with special needs, seen or unseen.

Here is a link:

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My Son Can’t Breathe

Jacob is a delightful little nine (almost ten) year old. He has struggled with his health his entire life. It started at birth with jaundice and constant tummy pain and crying. When he was six months old his little airway locked up tight and he was airlifted and intubated in intensive care. After that he was hospitalized six more times due to respiratory issues by the age of two.

I found out this fall that my little man has finally outgrown his childhood asthma (or only has a small lingering amount) and that he hasn’t developed any new allergies aside from a slight dairy allergy. All good news. Unfortunately his little immune system numbers actually dropped over the years. He is now hovering right at the bottom of normal and I can guarantee that if someone sneezes within ten miles of him he will get sick.

When Jacob gets sick he takes it very seriously. We aren’t talking a sniffle and a cough here, we are talking about full blown croup. Every. Time. Croup is an upper respiratory issue that they said he should have outgrown at the age of six. They did a scope on him a few weeks ago to see if there was structural damage from when he was force intubated as a baby but could not find anything other than mild narrowing of his airways. He has been referred to another Pediatric Pulmonolgist and a Pediatric ENT at Children’s Hospital. We can’t get in until the beginning of May.

In the meantime he keeps getting sick. He has been to the doctor somewhere around eight times or so in the last six weeks. They all kind of run together. They keep putting him on steroids to open up his airways, he uses his inhalers and home medications diligently, and he will get better and then worse. We don’t have a choice on the steroids, as there is very little future in not breathing. He keeps getting diagnosed with croup (and pneumonia once) and we are just waiting it out until he can see the new specialist.

Jacob has missed about 30 days of school, mostly this fall. I can’t send him if he can’t stop coughing and is struggling to breathe. Two or three times I have sent him when I felt he was having a good day only to have to go get him because the coughing wouldn’t stop again. He is on a 504 plan that I can’t seem to get the final draft of, which is very frustrating because he could very well be reported truant without it. Of course, it took me from September to January to get the new coordinator to even meet to put together the plan. She is new this year and on a power trip, making all of the wrong recommendations about all of the wrong people. Mostly I think this is because she doesn’t know the families and what they are all about, and partly because she is new and obviously is not good at reading the big picture. I don’t trust her at all.

In the 504 plan Jacob was to be allowed to view the classroom core lessons in Google Hangout, however, each time that I have asked since January I have been denied for one reason or another. This is very disheartening and I have been thinking very strongly about enrolling him in an online school for the remainder of the year. They would still require attendance and would honor his current (or apparently not current) 504 plan. I just don’t know if it is the right choice or not.

If the 504 coordinator was a little more forthcoming or would voice her thoughts I would feel a lot more comfortable, but she just ignores my emails completely. This makes me more than nervous. I don’t need to deal with courts regarding truancy. I have saved every email, every doctor’s visit and every communication – his absences are very valid and documented, but the procedure would not be easy. I also would be concerned about his father trying to step in at that point. He is getting a new wife from the Philippines and keeps making comments to Jacob that he could come live with him. These comments terrify Jacob, as he does not want to live with his father but is too afraid to tell him. He doesn’t even like going there on his every other weekend. I will be his voice if that day arrives, and thankfully he has told all of this to his counselor, and she would be more than happy to have them subpoena her records – it is just a road I would rather not travel.

His school counselor (he met her every week for a year) recently switched jobs (for very good reasons) and he is devastated by that. He told me flat out that she was the only one who “gets” him and that he didn’t want to work with someone else and have to start over again. My poor anxious little guy. I would be anxious too if I was always in and out of school, sick a lot and was getting pumped full of steroids that he says make his “insides shake.” We need a solution for this! SOMEONE has to have an answer. I am placing our hopes in the hands of the new specialists. He could use your prayers as well!

At night when I can’t sleep I often watch him sleep. Often it is because I am monitoring his breathing, but sometimes it is just because I am so thankful to have this wonderful child in my life. He has health problems, but you would never know it unless you met him when he was actually sick. He just powers through. He has anxiety and borderline ADD. That’s okay too, we can handle it. He is my little Tae Kwon Do superstar and excels at tournaments, inhaler in tow. He gives hugs and snuggles and has a huge, huge heart that I am very proud of. He is kind to people and animals and helps me train service dogs better than some adults. He loves to play outside, to hunt and fish and ride his horse. He loves to climb trees and practice shooting his .22. He plays with his dog, rides his bike and gets skinned knees and unintentional mouths full of dirt when he crashes. He makes me smile and laugh every day and am I ever grateful for this sunshine in my hectic life.

 

My Daughter is Broken

If you have followed me on my journey you already know that my children are gifted with medical mysteries. Lately these have come on strong. It is a constant concern.

I am talking now about one of my daughters, Madison. She is 21 now. Unbelievable. She was injured on October 2, 2012 when she was doing a double back flip off of the high bar in gymnastics and hit her head, rendering her unconscious and then planting her on the floor on her head again. We have fought many years to deal with the issues that have come from that TBI (traumatic brain injury). She has cognitive issues, such as remembering and processing reading, memorizing large amounts of data and more. She has daily headaches. Still, she got through high school, got her Liberal Arts degree at a local college to get some generals out of the way and is now in college in the pre-veterinary program. It isn’t easy for her. She struggles A LOT. Her grades aren’t the best, but that super determined daughter of mine just keeps pushing. She may not get to go to the vet school of her dreams, but she will get there somehow. She is also working in the college dairy barn, and loving it. She puts in as many hours as they allow so that she can gain large animal experience for her college resume.

She has a lot of physical issues that resulted from an over-zealous and not so understanding gymnastics coach. His desire to win was more important than the safety and health of his gymnasts. Thirteen years of gymnastics have left her with the chest cartilage being separated from her sternum, a rib that slips over top one of the others that we have decided not to have removed unless it gets worse, constant neck pain and more. She also has suffered from hip pain over the last few years. They tossed her on crutches a few years ago and that helped. At that time they decided she had bursitis. She improved for awhile but it came back to haunt her. She did two rounds of physical therapy, and spent a lot of time with a chiropractor. She is an active girl, who works out six times per week. We aren’t talking about hopping on the elliptical and going for a quick little run, either. We are talking two hours of free weights and body building work.

Her hip started popping about a year ago. We always joke that she is a 21 year old in the body of an 80 year old because of all of her aches and pains and kind of blew it off as that. She has accepted that chronic pain will be a part of her life forever. She knows that she will always struggle, but she isn’t afraid to work hard and try. At her last local doctor’s appointment I told her to demand a referral to an orthopedic specialist. She was sent to a surgeon. He found that she had torn her hip labrum (it is the material that holds your leg bone into your hip). He felt he could repair it. The recovery is long and slow, lasting a good 2-3 months, but he has fairly good success. However, when he got deeper into her scans he noticed that she has slight hip dysplasia. This means that he could fix the labrum, but it would most likely tear in a few years. Damn. He then did a CT scan and found that her femur is actually twisted in the socket and will need to be repaired as well. He has referred her down to Mayo Clinic (that’s okay, we already know the way) to an orthopedic surgeon that specializes in what is called a PAO (Periacetabular Osteotomy). Basically he would cut a chunk of her pelvis off, repair the labrum, reshape the hip, scrape off some of the bone on her femur and stick her back together with pegs and screws. Recovery time is at least four months (before she can even work) and a year before she starts to feel like her body works right again.

Why not a hip replacement? Because of her age. It is better to reconstruct the hip and fix it permanently than to slap a hip in there there that she will most definitely have to replace down the road. Does she have a choice? No. Many people have told her, and me, that she should just live with the pain. The longer she waits the worse the pain gets, because the labrum is slowly shredding inside. NOT doing this is not an option. She is on the wait list to see this specialist. Her pain level is quite high. She hasn’t been able to work out like she enjoys, which makes her depressed and moody. She can’t sleep comfortably. There is a long list of people ahead of her to see this doctor, so I call twice a week, every week to check for cancellations in the hopes of getting her in sooner. It hurts to see her hurt.

She is dealing with the emotional issues that come with this right along with the physical issues. This will most likely set her back almost a year at college. They don’t offer a lot of online options for pre-vet students and she won’t be able to attend class or even drive for several months. Her college is 70 miles from home so it isn’t like I can chauffeur her back and forth every day. We will figure it out, and hope that the college is willing to work with us. I keep telling her that it isn’t stopping her dreams, that it is just slowing them down a bit and that she will get there.

I worry about her all of the time. I worry about her twin all of the time too, but she is out there on her own in her own place and working two jobs. She has become completely self-sufficient and even if she didn’t follow her college dreams, I couldn’t be more proud of her. I am so proud of both of them. Madison is ever resilient and stubborn and difficult but those are the things that will get her through this. For now we are preparing the house (yes, the one that I am trying not to lose) for wheelchair accessibility and getting ready to face the dreaded recovery.

Wish us luck, and if you are the praying sort… pray for her strength. I will take care of her every step of the way, but she really needs strength right now.

My Little Emphatic Boy

How does one help a child that has inherited your ability to feel? My little man has emotions that are far too big for his little heart and soul to absorb. His feelings are huge, his tears are confused and his temper rages like the Incredible Hulk, only to quickly flame out, leaving him just as bewildered as the rest of us.

He started seeing a child psychologist. What little boy scratches his arms to keep from crying so that the other boys in his classroom don’t call him the “emotional one” when he cries? My little boy, that’s who. He has always been sensitive. Others have noticed. His father complains about it when I drop him off, saying, “He is just too sensitive, he needs to toughen up.” But why? Why can’t he be allowed to feel? He can’t stand to think that he has done something wrong. He has been diagnosed with an anxiety disorder, which you can see clearly at school.

He is almost nine now and is still struggling. Instead of crying when someone corrected a simple mistake he started scratching. He said it helped to keep him from crying. He was confused about why I didn’t want him to do that, since it wasn’t hurting anyone but him. I scratched my arm lightly and he became very upset and grabbing my hands, saying, “Mommy, please don’t hurt yourself!” I didn’t, but then we talked about how sad and concerned that made him feel, and that is why Mommy is so sad when he does that to himself. He hasn’t done it since. I don’t know if I was right or wrong, but I was hoping to appeal to his softer nature, to show him that he was so very loved that it actually hurts other people when he hurts himself. I don’t know if he got it or not.

He is well-liked. He even has a “girlfriend” that follows him around saying, “I L-O-V-E Y-O-U” and makes him turn red. I guess spelling it is not the same as saying it? He is smart. He tested high in math. He struggles in reading, it can’t hold his attention. We have tried book after book, program after program and it is improving. It just hasn’t quite clicked yet. But when he doesn’t get his work done on time, or makes a mistake he has a melt down. The tears turned into scratching and have developed into anger. He will crunch his paper, toss his book, kick the wall. He never hurts another person, but he certainly is having a hard time.

Last week I went to pick him up and he was pacing between the desks… face red, tears flowing. He had his hands up on the sides of his face, his emotions sending him into a panicky mixture of anger and sadness. He had tossed an eraser at another boy. The boy was grinning when he said he had tossed a scissors at him. The teacher did not believe there was a scissors involved but he could not handle that anyone would think he might have done that and was having a complete meltdown. I helped him get ready, explained that I believed him, and loved him and took him home. He quickly calmed. But how do I help him self-soothe? I can’t be there at school all day. I can’t intervene when I am not with him?

His father is a bully with a drinking issue. He thinks that he is “making him tougher.” He doesn’t need to be tougher. The kid is almost nine and only a year and half away from being a black belt in Tae Kwon Do and Hapkido. He is tough, physically. His emotions are soft. I want them to stay that way. Once his father pinned him down and hit him in the back, in play, but too rough. He wanted him to stop. His father told him that “wimps tap out” so he finally tapped out. His father stopped but called him a wimp. His father checked for bruises. If he was playing so rough that there was fear that he left a bruise then he was WAY out of line. There were no bruises but my son was sore for a few days. Unacceptable. Documented. Documented as well with the psychologist. He came home with a bruise on his buttocks. His father said that he kept sticking his butt in his face so he bit it. He left a bruise. My son was mad at him for several hours and came home wearing two pars of underwear. Unacceptable. Documented and documented with the psychologist.

I asked him if Daddy ever hit him, or hurt him in anger. He said no, never. He knows he can tell me. He always tells me. His father tells him that his Mommy doesn’t have a real job. My son gets upset and defensive. It is not right for him to put a child in the middle of his thoughts and to disparage me. He is a child, not a pawn. He is a human with emotions that don’t need to be played with or confused. I tried talking to him. He does not listen. He listens to Captain Morgan or Windsor or Jack. One day he is the nice man that I remembered and loved, the next he is a jackass that I would just as soon hit with my car than speak to. It all depends on which man I get that day. He loves his son. He just is not good at understanding emotions. Understood, given his history, but not an excuse and not okay. We left in a hurry for a reason when my son was only five months old.

I am scared. I don’t want my son to struggle. I am trying hard. We are using the tools from the psychologist. It is hard to be patient. It is hard not to be frustrated. I pray the tools work. I pray we get it right. I pray that his father’s dysfunction doesn’t cause my son issues as he grows up. I pray that he doesn’t have a problem with addiction. Alcohol is not a way of life that I want him seeing and believing in. I try to curb my thoughts from voicing my feelings when he tells me things that his father has said about me. I can’t make it stop so there is no point in getting upset. It is hard when others say things about you that are not true and you can’t defend yourself because it would involve placing a child in the middle. I just tell him how it really is. I ask him if he sees me going to work every day. He says yes. I explain that if he knows I go to work every day then he knows that my job is real. It seems to satisfy him. This is only one example of too many of these conversations. I focus more on him. I tell him that he is not too sensitive. I tell him how smart and wonderfully funny and strong he is. I tell him how proud of him that I am.

I support his activities, hauling him from here to there and making every program, every game, every belt testing, only to see his little face fall when his father misses yet another event. I just tell him, “maybe he will come next time.” He shows up for maybe one a year. Each time I see my son hoping it will be “this one.” But it never is. My son said, “I don’t know why we bother telling Daddy, he won’t come and not because he is busy. He loves my sister more than me.” (He has a half sister that lives with his father sometimes). I don’t know how to answer it. I tell him, “Daddy loves you.” We move on from it. He knows. He knows because he sees it. She gets things if they go shopping, the last time it was a basketball, a softball and a softball glove. My son got nothing. Not cool at that age. He didn’t say anything but it hurt his little heart and he told me again when he got home that “Daddy doesn’t love me. He goes to all of her games. He doesn’t come to mine unless he has to.” My heart breaks for him. Love is not material but at that age, it was very unfair to do that in front of him. This weekend is his weekend at his father’s. He has a tournament. I offered to come get him and to bring him back. His father said he would bring him. I hope that he does, otherwise I will go get him. He did this once last year and came but then was upset because he wanted to take his daughter to a batting cage during the tournament and it wasn’t open. My son heard him and his little heart was crushed.

I maintain discipline but he is kind of spoiled. The age difference between him and his siblings is 11 years. He is pretty much an only child.  I spoil him but I also make him work for his special things. He saved $42 and bought himself 1/2 of a refurbished chromebook so he could use his school programs at home. I agreed to pay half. I was very proud of him. He comes to work with me some weekends when I groom dogs and earns part of what I earn when he helps. If he doesn’t help he doesn’t get paid. It is easy work for him, holding the dryer, brushing a dog, getting the shampoo… but he needs to be involved to get his cut. I want him to have work ethic, to understand the value of money, to understand that the harder you work the more you make.

I can only hope and pray that as he grows he will keep his head on straight and see life for what it is… a whole lot of opportunities. Right now he wants to grow up to train police and military dogs. He could do it. He already trains service dogs with us. He is good at it. His father says that he can’t do that, that he needs a real job, that he needs to join the military. It is a pipe dream because he has asthma and probably wouldn’t get accepted, but his father plants the seed as often as he can. If he chooses the military ON HIS OWN I will support him. If he doesn’t, I WILL SUPPORT HIM. His father should be doing the same. Who knows where life will take him? Let him grow up and see who he is and what he wants to be.

Venting time is over……….. rambling thoughts are still tumbling but I think I have gotten most of them out for now….. thank you for listening.

Really? Strep? Again?

Almost two weeks ago my five year old little man came down with scarlet fever… basically strep with a rash. He was given medication and was soon feeling better. His rash finally went away a few days ago. Yesterday he spiked a 101 fever and it continued throughout today. I didn’t mess around and took my sad little boy to work with me and then to the doctor only to find out he has strep again. Poor buddy! I was concerned that he never got rid of it and she said it was possible but that it is more likely that he got it again, since he was feeling better. She decided to put him on penicillin. It took forever at the doctor’s office. During all of this my son got the wiggles and because we were at the clinic it took a bit to get him to the bathroom and, of course, he didn’t get his little jeans undone in time and ended up with a mess. He was embarrassed. He didn’t feel good. I was flustered, but remained calm for his sake.

When we finished up at the doctor we went and got him a pair of sweats and some new underwear so that he could go to the pharmacy without smelling like urine or having wet pants for the next hour. He never has accidents. My poor little man. Of course, there was some problem at the registers and we ended up waiting in line for nearly 20 minutes to make our purchase and then were pushed out of the way by some big scary looking man who obviously didn’t give a crap who was in his way when they opened up a new lane. My son was sick, wet, and had a fever. I couldn’t and wouldn’t leave him in the car, and there was no place else to take him while I got his medication. Single parenting at its finest. I just did my best not to let him touch ANYTHING. I got him changed in the car, and then headed off to the pharmacy where we learned that the doctor had accidentally submitted the wrong dose and had submitted the prescription again and that the pharmacy doesn’t carry liquid penicillin on hand for children. At this point we were both getting quite frustrated. I just sat down and snuggled with him while we waited for them to sort it all out and he ended up on Amoxicillin. As I was paying the pharmacist noticed that I had burst a blood vessel in my eye. Super cute. Now I look like something from a vampire movie and not the pretty ones.

We are finally home. I got some Motrin and his antibiotics in him and he is starting to feel better as his fever drops again. I am trying to relax and take a deep breath before I finish the first half of my final for one of my Advanced Coding classes. I got up at 3 this morning and finished it because I couldn’t sleep, so I really just need to review it and make sure I was somewhat coherent this morning.

Tomorrow…. well, tomorrow we are staying home. I am calling in sick and so is he. Perhaps things will be brighter after we both feel better. Here is to a better day!

Insomnia

I am tired. I need sleep. I want to close my eyes and detach the wiring that makes my brain start to spin on nights like this. I lay here and think….. Then I think some more. I think about my girls and how wonderful they are doing.

I think of my Taylor and how she has changed, how she got almost all A’s on her report card for the first time in years and how I didn’t have to bother her at all about homework or studying all trimester. Not once. I think about her future, how her Computer Science teacher told her she was the at top of the class and he really wants her to take the Advanced class…. She laughed and told him “Maybe next year, but I really don’t think a cosmetologist needs the advanced class.” I can hear him thinking that she is wasting a talent…but he doesn’t know that Taylor has many talents and intelligence is only one of them.

I think of Madison and her return to high school two years after her injury. I look at her attendance and see that she has missed at least 15 days in the last month due to bad headaches. The school has accepted this and is being very accomodating. Yet, she also has almost all A’s. She works so hard. Once again I don’t have to pester her. Sometimes when she is hurting I have to remind her, but she is self sufficient. I worry that she is depressed. She says she isn’t. I had her in a “group” class at school but the childish para chased her away by being less mature than her students. I worry that the injections she is getting now will not work, I worry that there are fewer and fewer roads to take to help with her pain.

I look at Jacob, sleeping so quietly. He was recently very ill with scarlet fever (which I learned was basically strep with a rash) and is finally feeling better. He has been crabby lately, emotional. He had a couple of seizures (something more complex than an absence seizure but not much more) where he spaces out for 20-30 seconds. The EEG showed normal and if he continues to do this he will need to have a 3-4 day EEG to see if they can catch an actual seizure. He is emotional. He is tired too. I drive him to school and pick him up in order to allow him some extra time to sleep each day. I put him to bed early. I guess being five is hard. He needs a nap but refuses anything of the sort, even if I make him lay quietly. I guess the age of “resting” is gone. I would like a nap, haha.

I worry about money. I worry about Christmas gifts. I worry about the mortgage and how I only have a couple days left in this month to get it paid. I wonder how I am going to get caught up. I worry about student loans, property taxes and getting new tires for my vehicle and the for the girls. I worry about how I am going to send them to college. I worry about things that it does me no good to worry about all night long. I know it will work out. Somehow. I will make it work because I always have.

I start final exams tomorrow and am not looking forward to them. I have one semester left and I will have both of my degrees (three if you count the one I got when I actually went to college the first time) and will be job hunting nonstop until I can make use of what I have learned. My grades are holding well and my professors are pleased with my work. Let us hope future employers will find my resume impressive as well.

Back to the pillow for me. The house will be awake soon. Puppies will want to go outside, little boys will want bacon and eggs, teenage girls will need to go to work and computers will stare back at me while I trip though several over-coded diagnoses.

Sleep well world, those of you that can.

No Dates Mom!

I needed to get out one evening last week, just for a little while. I was gone for a grand total of two hours and picked up groceries and critter food. Jacob (my five year old) and I had the following conversation regarding my absence:

Jacob: “So, Mom. Where did you go?”
Me: “To the store.”
Jacob: “I think you went on a date.”
Me: “I didn’t go on a date.”
Jacob: “If you live with a police man I am not going to live with you anymore.”
Me: “I am not dating a police man. I am not dating anyone.”
Jacob: “I know you went on a date.”
Me: “Jacob! I didn’t go on a date. A date is where you go out and have dinner or go to a movie and maybe have a few drinks with someone else. I definitely didn’t go on a date.”
Jacob: (with an exasperated eye roll) “Ughhhh! I am not even going to do this with you right now.”