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.