Confessions of a Special Needs Mom

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When my children were born, I wish I was also handed a guidebook to each one. “It’s a boy and here is the complete guide to (insert child’s name here).”  The first year of motherhood would have been much easier. I would have spent a lot less time worrying about a fever or fretting about how to curb tantrums. I could turn a page and I would have all the answers to each child. No doubt my special needs child would need at least three manuals. One for his primary diagnosis, one for autism, and one for epilepsy. I would also need some additional emergency booklets labeled, “What Kind of Seizure is This?”, “Why He Won’t Eat,” and “The Complete Guide to Sensory Issues.” Autistic meltdowns would require a complete desk set. Sadly, no such manuals exist. Navigating parenthood is rewarding but also scary. Figuring out how to be a good parent takes trial and error. I have made my share of mistakes, especially with my special needs child. I don’t have all the answers to my child’s medical and behavioral issues so it can be hard to for me to be honest about the mistakes I have made as a parent.

I have made assumptions on the behalf of my child. There have been times that I have not allowed my child to participate in an activity because I didn’t want to have to deal with the possible anxiety he would have. Sometimes this is necessary. I know him best and often get frustrated when others insist that he does something when they know very little about him. In turn, I have also denied him the opportunity to find out for himself what he wanted to do.

I have sheltered my child. I have kept my son inside or away from activities for my own benefit. I have been afraid of the stares an autistic meltdown would draw in public. It has taken time for me to build confidence and know that I am strong enough to handle whatever might happen.

I have underestimated his abilities. Sadly, I had already determined that he would never be able to do things like communicate efficiently or write his name. I was so convinced I was right about things like this, I would fail to push him to pursue certain goals. He has proved me wrong. His vocabulary has exceeded my expectations and he can independently write his name.

I have played out his worst case scenario. Instead of thinking that he could be independent some day, I have determined he would always be living with us. I think maybe I want to protect him as long as I can but again, I should not set limits on his potential.

I have distanced myself from him. I know this is normal but I have taken his outbursts toward me personally. I frequently forget that he is at the mercy of his disease and the side-effects of multiple medications.

I don’t always let him fight his own battles. I am guilty of this with all my children. I intervene when I should let him try to work problems out on his own. Sometimes, I need to step back and allow my children some trial and error of their own.

I talk about him as if he isn’t in the room. This is something that I promised myself I’d never do. I can’t assume to know that he does not understand what I am saying. I have to be careful not to make him feel like we are not including him in conversations.

I have not always been patient with him. Patience comes with practice and I have had plenty of opportunities to practice it.

I also have failed to be consistent with the way I handle things. I have not always stood my ground when he demands something in an inappropriate manner.

He needs structure and I have not always provided it. Sticking to a routine is hard for me. I have three other children and my special needs son sometimes feels like two kids rather than one.  It is easy to get overwhelmed.

I have been lazy. There are days where my life exhausts me. I let this be an excuse when we do only what is necessary.

I have put my needs before his own. I know my well being is also important and I do need to make time for myself, but any time I do so, I feel guilty about it.

I have wondered if I love him. I have made so many mistakes and have failed so many times that I wonder if I truly love him. Then I think about him and I feel how deep our love really goes.

I have given up. Yes, I have thrown in the towel on more than one occasion. I’m human and I get frustrated. He works so hard to grasp a concept and then his seizures increase or we do a medicine change and he regresses. It is hard to keep trying when we have to keep going back to square one.

I have failed to see the bond our difficulty has formed. Adversity really does strengthen a bond. We have been through a lot together and I wonder why he likes me so much. I feel like I have failed him two times over. I feel like I have failed him as a typical mom and a special needs mom. It almost feels like I have the potential to make double the mistakes.

I have been a “helicopter” mom. There are times that I would sit on his shoulder if I could.

I wish I knew what joy this experience has already taught me sooner. It is so hard to explain this to people who don’t raise a special needs child. I don’t want any of the difficulties for my son, yet he has taught me so much about life in such a short period of time.

I forget how much he has working against him. I have been frustrated when he can’t grasp what seems to be simple concepts. I forget to look at things from his perspective.

I have to keep reminding myself that his age on the outside does not match the age on the inside. I must remember to consider his developmental age and stop expecting too much from him too soon.

I am overly emotional. I know it is hard for other people to understand why it is a big deal when he independently wrote his name or put together a complete sentence but it is for us. Learning is often an uphill battle for him and we celebrate his victories.

My son is amazing and I love him deeply, even when one of us, or both of us, are at our worst. The responsibility of raising him and my other children is something I don’t take lightly, that may be why I hold on to so much guilt when I do fail. I want to be the best mom I can. This means that I have to be honest about the mistakes I have made and learn from them. There is always a time to get real, try harder, and give him the best of me.

*d*

The Rose Colored Glasses

This is one of my favorite posts….

CrossRoadTrippers

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Beautiful is the view from rose colored glasses. The dreamy spectacles enchant the lackluster world. Nothing can spoil the view when the world is tinted in the hue of rose. Storms roll in and candy colored drops fall from the sky. Just open your arms wide to receive the gifts imparted from a world radiating a floral glow. All have worn them and all have felt immune to the world. The newly in love, the couple having their first child, or maybe newly acquired wealth. While in this transient state, nothing else matters. No words or advice can penetrate the feeling. I was there many times. It felt glorious and no one could change me. All was right with the world and I had all the answers. I only wanted to do as I wished and no one could challenge my flawed beliefs.

Time still passes when in possession of…

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I Can No Longer Deny It…….

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Getting older is inevitable, maturity is not. It seems a bit sad when maturity catches up with age and there is no longer denying the fact that……. I’m getting older. In fact, I can remember my parents being my age. What happened?

I remember when I started watching the news instead of cartoons in the morning. I stubbornly held on to my childhood routine well into my twenties. It was when I took a new job that I began watching the news for the weather report. My commute one way to and from work went from five minutes to forty-five and I wanted to be prepared. What happened to living by the seat of my pants? What happened to rash decision making? Why did I agree to take a job with such a long commute? I wanted the experience but I mostly wanted more money. No twenty-something can resist the allure of more money.

My list of items I buy with money has certainly changed in fifteen years. When I was a twenty-something, I bought a video game system with some extra money (yeah, what’s that, right?) I had acquired. More recently, I had a conversation with my husband before our ten year anniversary. We were talking about what we would like to do to celebrate our anniversary. I said, “If I had a choice between spending a night away and replacing the kitchen carpet with flooring I can actually clean, give me the flooring!!” I wondered if I had hit my head. That’s what I said and I meant it. Yes, we have been dreaming of a night away from home forever…… one good night’s sleep, a quiet room…… and it sounded dreamy but being able to actually clean my kitchen floor sounded even more exciting. Our anniversary was almost three months ago and we haven’t been out to celebrate. And no, I don’t have a new floor. It seems as if that newly acquired money hasn’t made its arrival. Instead we gave each other a card and winked as we passed each other in the bathroom. That’s real excitement and I have been having plenty of it. I was excited to get my mail and find coupons from the local grocery store, I got 20% more of my favorite cereal in this last box, my mom gave me some clothes she could no longer wear, and (drum-roll, please) I found another box of panty liners in my cupboard  that I forgot I had. “Oh yeah!”

Despite the obvious change in the things I get excited about, I still feel like I have recently graduated from high school. Over fifteen years span between my imagination and reality.  I don’t feel old enough to have four kids and it scares me to think that I am shaping their childhood when I feel like I am not that far away from my own. My parents and every other “old” person was right when they told me that life moves too fast. Now I am that “old” person saying the same to my kids. Guess what? They are giving me same look I gave my parents when they offered advice. It’s that face that says, “Ummmmm, okay Mom….”

So I have resigned to the fact that I’m now “old.” The only comfort I have in the fact that I will be forty in five short years is knowing my husband will be fifty in six (sorry babe). I like the news for more than just the weather, I get nervous thinking about those roller coasters I once loved, I don’t like it when my kids climb too high in a tree, I’d rather watch a movie at home, I have a hard time recovering from a night where I was awake past midnight, and many more truths I can’t quite admit…… just yet……. Life definitely gets better with age, it’s too bad those “darn kids” don’t realize it.

*d*

PS – My favorite cereal is Lucky Charms and I still insist on putting chocolate syrup in my white milk. I’m stubbornly sticking to those habits, for now…..

 

Reply by ~L~

*d*, I can’t even tell you how often I think about this same Twilight Zone feeling. I don’t feel like I’m an adult. I wonder sometimes when or if I ever will. Maybe that’s another reason, on my long list, why I don’t have kids. For the same reason as you state above! I’m not in any shape to be teaching someone else how to live! Eeek! Frightening.

Invisible

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I have an invisible disease, two in fact. I have Rheumatoid Arthritis and Fibromyalgia and I have had a terrible few days. I thought I was doing better, but I recently had a severe allergic reaction to a steroid injection. To make matters worse, my right knee is retaining fluid much like my left one did a couple months ago. The only thing that relieved the swelling was a steroid shot. ~Sigh~ Now I wonder if a shot in my right knee would end up being the end of me. Water on the knee caused by RA is painful and limits mobility. I hope I can meet the physical demands of having small children, one with special needs. “#&÷£#;&^:!* it, I want my life back!!!!” No, I am not asking for sympathy. I am determined. I want to take charge of my life again. I can’t do it without help and I want to tell you a few things about living with chronic, invisible disease:

I want your understanding. I may choose my absence, but that’s not how I want it. My heart wants to be around even when my body doesn’t. Don’t take my occasional absence personally.

So, don’t forget about me. If I can’t go out, even after you have asked on multiple occasions,  please keep trying. I really want to go but if I decline, I do have a good reason.

Sometimes others make me feel guilty about having an invisible disease. Not all disabilities can be seen with the eyes. If I require assistance, I assure you, I need it.

I may not look sick, but trust me, I am. I don’t grimace in pain or neglect to take care of myself to gain attention. I want to smile, and I want to look like everyone else. And telling me, “At least you look good,” is flattering but it doesn’t help.

It is hard for me to ask for help so offer a helping hand, even if I don’t ask. Unfortunately, asking for help makes me feel defeated and I don’t want to feel like I have given up.

Don’t treat me differently. I don’t want conversations to feel like those offered to mourners at a funeral. I am still alive.

Don’t make assumptions on my behalf. Would you want to be left out because someone assumed you didn’t want to do something? Again, I’m not dead.

It’s okay to ask if you can help me when you see me struggling. I won’t be offended if you offer to help me carry something or open my door.

Don’t ask me about my health if you don’t want to know. I am an honest person and I don’t like to sugar coat my life to make you feel better. If I get the chance to unload, I’ll take it.

I still want to feel useful. If it is within my ability, I want to help.

Don’t ask, “Are you better now?”
“No, would you like me to be?” I have a life sentence, it will be better for both of us once you accept it.

Please remember, there is no cure for my disease. Although I appreciate the suggestions of alternative healing, I see a specialist. We are working together to give me the best chance of a productive life.

Make me laugh. Even on my worst days, I can almost forget my pain when I laugh.

Be a soft place for me to fall. I need a safe place to be at my worst.

I need friends I can trust. I don’t want drama. My life is too difficult to deal with extra stress.

Be patient with me. I am still learning how to live with a chronic disease. I have good days, I have bad days, and I have really bad days. I am doing the best I can and I am determined to overcome. What I need is you. I need a friend, I need support, and I need lots of love.

*d*

Parent’s Cheat Sheet for the Newly Diagnosed

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My son will be seven in a couple weeks and I can’t decide if I have a harder time accepting how fast he has grown or realizing how long he has struggled. My son was diagnosed with an incurable disease as an infant and it was a very scary time for us. I thought I would write myself a cheat-sheet as the mother of a newly diagnosed child:

* You don’t have to have all the answers right now.
I know it feels like you should but deal only with the issues right in front of you. Ask the questions but don’t overwhelm yourself. There will be time to become an expert, but it won’t happen in one day.

* Take what you learn while researching lightly.
No child is the same. There are worst case scenarios for every illness, but don’t assume the worst until you must. Again, deal with the here and now.

* Do not be afraid to make a phone call to your child’s physician.
I once was hesitant to call my son’s neurologist but I got over it. Don’t hesitate to pick up the phone, even if it’s to ask additional questions. Medical staff really are there to help.

* Buy a notebook.
The first year of post-diagnosis is a blur. It will be hard to remember everything. Write down what you feel is important. It will come in handy during doctor’s appointments. Also, write down all your questions before those appointments. Until you get the hang of your new normal, life will be chaotic.

* Speaking of papers, you may want to organize a place for paperwork.
Life in a few years will be full of paperwork. These documents can be a lifeline of valuable information. DON’T LOSE THEM!

*Get in contact with your local county funded board of disabilities.
Head Start and the local health department are also good places to contact. There are many people and programs designed to help children facing life altering illnesses. You may also want to speak with a social worker at the hospital.

* Love your child.
I know this may sound silly to say but sometimes the addition of a diagnosis can make you feel distant from your child. He or she is the same child they were before you learned of this reality. A child can feel a difference even if they are not able to verbalize it. Affection speaks it’s own language and it’s understood by all.

*Feeling distant from your child is normal and you are not a bad parent.
There will be days where you will feel like you can no longer relate to your child and you may wonder if you still love him/her. I assure you, you still love your child and you will experience a love deeper than you have ever imagined.

* Life doesn’t end here.
Right now, it feels like the life you knew is over. Yes, you will morn. This too is normal. The loss of a healthy child is real and you need to take your time to work through the grieving process.

*Life is now about taking one day at a time.
This was the hardest reality for me to face. I could no longer dream of tomorrow because every day with disability and disease is about getting through today.

* Do not limit your child.
Some may disagree but you child has great potential. Even if your child is severely disabled, he or she can teach you great things.

* The sooner you let go of the guilt, the better.
Guilt does not change reality. Replace guilt with determination. Every time you feel like you are not doing enough, resolve to try harder.

* You don’t have to be strong for anyone, except your child.
There will be times when your child will look at you with fear in his or her eyes. At those moments, you must be ready to say, “I’m here and everything will be alright.”

* You are this child’s hero and you will be their champion.
You are stronger than you know and you will do great things, even when you feel like you are failing. You will be a soft place to fall, a source of strength, and a light for your child in dark times. You may feel at your weakest now, but your courage is about to be unleashed.

* Speak up and speak out!
You have this child for a reason, find it and fulfill it! Use your voice and don’t feel bad about it.

* This just may revive your hope in others.
You will experience compassion and understanding from many people. You will have a rare and special opportunity to see how much love is in this world.

* Don’t be afraid to reach out.
There are resources and people waiting to help. You are not weak by asking for help. You now have a very heavy responsibility.

* It’s never too late for a new start.
There have been days I would rather forget. Some days are extremely difficult but there is always a chance to try again. Regardless of what happens in a day, you can always step back, take a breath, and work for the better.

* You won’t always feel this bad.
I know it may be hard to believe right now but it will get better.

* Blow bubbles, sing silly songs, and laugh with your child.
Smiling won’t be a cure but it will help heal your heart!

There will inevitably be days when you will feel like life is unfair and you are powerless to change it. Remember, you are not alone. There are many parents experiencing the same thing. Most of these parents will tell you how they have been transformed for the better because of the journey in which you are now about to embark. You will see life more clearly and love more selflessly. You will see life through the eyes of a special needs child, and it is life changing.

*d*

Thirty Lessons From a Special Needs Parent

A few events today had me thinking about the following post. I had originally posted this on my personal Facebook page and I thought I would share it here. I haven’t been a special needs parent for very long but it has certainly changed me in a short period of time.

1: Patience is needed and taught on a daily basis.

2: “Slow to anger” is an important saying that does wonders when practiced.

3: Someone should never be judged based on their disease and/or disability.

4: Never judge someone if you are not coping with their problems.

5: Treat others the way you want to be treated.

6: Whispers, stares, and gossiping about a situation that can’t be helped, hurts.

7: Difficulty teaches compassion.

8: We want to help but are often hindered by our circumstances.

9: Guilt is a part of every day life.

10: Depression is real and is felt a lot more often than we want to admit.

11: Help is not requested as often as it’s needed. It seems important for others to think we aren’t falling apart.

12: We stay at home and shy away from gatherings if we know it will cause stress all around.

13: Choosing a baby-sitter is a big deal, thus we don’t go away as often as we would like.

14: We appreciate the opinions of others but rarely take advice from those who spend very little time with our child.

15: We need and love support, support, support.

16: We rarely want sympathy. We just want someone to talk to. It helps us unload some of our burden.

17: We want to know about your family and notice when you stop reaching out to ours. We realize our life seems depressing, but it is ours.

18: Our hearts break a little when we see others doing things we know we may never be able to do.

19: Negative people and opinions hurt, we are doing the best we can.

20: Love reaches deeper than we ever expected.

21: What seems like a burden to others, is a blessing to us.

22: We are sad when others refuse to see the joy our children bring to our lives.

23: We have seen more compassion and love from others through our difficulty than we ever expected and it’s humbling.

24: Celebrate the little things.

25: Choose the battles that really count.

26: We worry about losing our spouse profoundly more than other people. We know how difficult it would be to raise our children alone.

27: We no longer measure great achievements by the world’s standards.

28: Some of the best friendships we have made are forged through a common bond.

29: With each struggle we become stronger.

30: Our journey has helped us love the differences we see in others.

If given the choice, we would not choose a disease or disability for ourselves or for our children but we have been blessed by the difficulty it has brought us. We know what it means to make every day count and we understand why each day must be appreciated.

*d*