My first pregnancy resulted in a loss of a baby boy. I was 5 months pregnant and had difficulties the entire pregnancy ranging from bleeding to contractions. Finally, they put me on bedrest for the remainder of my pregnancy. I was scared and rightfully so. On May 29th at around 2am, the contractions became so painful that we called the doctor and were told to get to the hospital. As soon as we made it to the car, my water broke. There wasn’t a chance to save him. Needless to say, I was devastated and depressed beyond help. No one knew what to say. Some told me to “put it out of your mind” and some planted trees in Israel. Nothing could bring him back.
It took me many months, a lot of medical testing, and intense therapy sessions before I tried to get pregnant again. I stayed on bedrest the entire pregnancy and was able to carry a little girl to term. About 6 months after she was born, we decided to try and get pregnant again. It had taken us years at this point to have our daughter and we weren’t sure how long or if I could even carry another baby to term. Miraculously, I got pregnant immediately. My due date was the exact same date as my first pregnancy and we found out it was a boy. I felt like these were signs. I felt like he wasn’t ready to come the first time, but he was coming back to us. 9 months later, I went into labor and delivered our beautiful boy at 5:29 PM. We lost the first baby on 5/29. I don’t always believe in God (life is so challenging, right?) but this was definitely a miracle. Too many similarities, too many coincidences. I felt like my heart was finally healed.
When my son was 3 months old, we realized there was something wrong. He was delayed and as the months progressed, more noticeably so. He wound up being diagnosed on the spectrum, with apraxia, and gross motor dyspraxia. As he grew older, ADHD and OCD were added to the mix. As challenging as it was (and is), I wouldn’t change one thing. He wasn’t ready to come the first time and maybe not 100% ready the second time, but he somehow made his way back to us.
I took my little miracle home on my birthday. It was the best birthday present I have yet to receive. He is truly an angel from above.
Let’s face it, marriage is hard. The initial dating stage, romance & courtship is all fun and games…usually. You don’t have fights over bills and kids and when you think you found the right one, your head is usually in the clouds and you walk around with a permanent smile. You get married, play house, talk about your dreams of children and picket fences. You pick out furniture together and settle in. Then you get the big positive sign on the stick and you think life couldn’t be better.
9 months later when you are as big as a cow and really don’t think you will make one more day, your precious baby will arrive. It will be a day you will never forget and it will trump any day that has come before it. Including your wedding day. You will never forget that day for as long as you are alive and you cannot begin to imagine loving another human being nearly as much.
Weeks go by, months, maybe a year. You are tired and you may start having fights whose turn it is with the baby. My husband would say he had to go to Home Depot and I would say, “You are taking the baby, right?” I couldn’t remember what it felt like to have 30 minutes to myself. So he did. But, for the most part, new moms are exhausted and on call all of the time.
Moms with special needs kids will remember the first signs, first signals that maybe something isn’t right. You may begin to fight with your spouse about therapy- how often, what kind- are we doing PT and OT? Should we be fighting for more services? You may be too tired to reconnect, physically and emotionally. Every ounce of your being is spent taking care of your child. You may not have time to go to the gym and you think- let me get this under control and THEN I will take care of myself. You may be depressed. You may be angry. You may be all of these things and your relationship can be taking a nose dive, quickly.
10 ways to stay connected
1. Take turns. There will always be therapy appointments, IEP meetings, tons of evaluations and doctor appointments. Not everyone can be everywhere, all the time. It doesn’t make you a bad parent if you share the load. You are both committed parents and if only one person is pulling their weight, there needs to be a discussion around this. No one can do this alone. If you are a single parent, look for support from family or friends.
2. Take care of yourself. I know this is easier said than done but it is true- if you don’t take care of yourself, you cannot take care of anyone else. There more you take care of yourself, the better you will feel emotionally. Map out sleep and exercise for the week the same way you would schedule a speech or OT appt.
3. If you are depressed, seek help. Consider medication. I know so many special needs mom who have started medication for anxiety or depression or both and it made a world of difference. At the very least, see a therapist. Cry, scream, talk about it- just get it out.
4. Have sex even when you don’t want to. You will feel reconnected and remember the reasons why you love each other in the first place. It will also release endorphins. Win-win.
5. Be kind to one another. It is so easy to take out the stress out on each other. Try not to do it. Apologize if you do.
6. Give each other a certain amount of time per week for alone time. It can be as little as 1-2 hours and it can make a world of difference. I know a one hour massage can recharge me very quickly.
7. Be there for your spouse. I think a lot of dads think they need to be the strong one and hold it together for the mom, but dads need to break down too. Moms need to give them the time and space to do that.
8. Find doctors you trust. It helps when you have someone you trust leading the way. A lot of fights come from not knowing, uncertainty. When you feel in control, it is not nearly as overwhelming.
9. Celebrate everything. Milestones, birthdays, anniversaries. Find the good where you can and make a big deal out of it. Take pictures of the good days, video the first words and look back on them during the darker times.
10. Say “I love you” every day. It may be the most effective way to stay connected.
To medicate or not? That is the new question of this generation. We are the parents of the generation with ADHD, Autism Spectrum Disorders, OCD, Tourettes, and a multitude of other disorders that are diagnosed as we lay out thousands of dollars our insurance won’t cover. And most of the time, they don’t have the answers or will say something like “We really won’t know until they are 8 or 10 or 12 or 16….” So parents, do we medicate or not? Do we continue with behavioral therapy by itself praying that all of the positive rewards and star charts are going to make a difference? Or do we bite the bullet and add a few chemicals to the already chemically unbalanced child?
This is not an easy decision for any parent. We started our son on medicine at a very early age. He was too young to swallow a pill so we mashed it up and put it in chocolate pudding. Only later to find out it wasn’t supposed to be mashed. We had him on it for years and wondered why we didn’t see that much of a difference. We have been through an entire pharmacy shelf and about 6 different child psychiatrists trying to find the right medicine, the right cocktail. My husband and I have had major battles wondering if we should add more medicines, increase doses or take him off everything altogether. If you haven’t been in this situation, trust me, it is stressful. I now have to color my hair.
We ultimately decided to give our Aspergers/ OCD son a break from medicine. It wasn’t good. We saw an increase in behaviors, both obsessive and physical, and got way too many calls from school. School made it very clear that although they can’t tell us to medicate him, maybe we should see another psychiatrist? I agreed.
We made yet another appointment with another psychiatrist. I was not looking forward to this visit. How do you start at the very beginning with the 8+ years of medical/psych history? It would take weeks to tell her everything. Somehow, this psychiatrist simplified everything. She was the first one that said he needed to be on something for the OCD which would in turn, decrease the aggressive behaviors. She explained that the aggression was due to him getting “stuck” because of his OCD. So, we started him on an SSRI and an ADHD medication. This time, at the right dose and not mashed up in any dessert.
For the first time in 8 years, he is truly happy. I am not saying that medication is the answer to make all special needs children happy, but I am saying it is the answer for him. He isn’t getting stuck on electronics, or getting a perfect score and he isn’t throwing chairs across the room when he doesn’t get his way or he loses a game. My house is calmer now and my other children aren’t walking on eggshells. It has been a long journey and I am still holding my breath (we still have to get through puberty and growth spurts) but for now, I will take it.
How many special ed moms out there are overwhelmed on a daily basis?
We have our routine- wake up, get the kids dressed and fed, try to make ourselves look presentable and do what we can to show the world that we are OK. On the outside, anyway. We rush to get them to school or therapy or both. Homework, rushed dinner, bath/shower…and then we collapse. And start all over again the next day.
For most of us, we don’t slow down. We can’t afford to. I used to think if I slowed down I would never start again and I was truly terrified (excited) by the thought of curling up in a ball and sleeping for a week. But, we can’t allow ourselves to really do that, right? What doesn’t kill us makes us stronger? I used to love when people told me “I don’t know how you do it”. My response always was “what choice do I have?”
I am not complaining. I love my children more than anything (I had 5 and still would want more if I could) but I am exhausted. Sleep deprived past the point of insanity. I dream about sleep the way kids dream about Disney World. A night out with my husband sounds so good until our heads are in our plates and we wonder if maybe we should’ve ordered in dinner and attempted to watch a movie. A far cry from my 20’s where I was out until early morning, drinking myself silly and still had the stamina to do it all over again the next night.
Here is the thing. I think I am so overwhelmed that I am missing the moments that make it all worth it. I think we all do this and even though we know we are doing it, we don’t know how to change it. I know I need to slow down and cherish these moments or I am going to turn around my children will be adults and the only thing I will remember is that I rushed through their childhood, 99% of the time feeling overwhelmed.
The question is, “How?”
The other night my son kissed me goodnight and started getting silly. He asked for a butterfly kiss, an elbow kiss, an eye kiss and an ear kiss. We giggled. We cuddled. And it was perfect. All of a sudden, time stood still. It was one of those moments that I am freezing in my mind. Soon enough, he will be a teenager locked in his room and won’t want to give me sweet, silly kisses. They will be far and few between.
And it came to me. I didn’t have to change what I was doing, I just had to slow down. Calm down. Savor those kisses and giggles and spend more time actually being present than worrying about the future.
There will always be more laundry and homework and cleaning…
I am choosing tickle fights, giggles and silly kisses.
Want to create chaos in a room full of mothers? Talk about vaccines. I know, we are all sick of the vaccine debate, but without clear-cut answers, we still do not know what is causing our children to be diagnosed with Autism Spectrum Disorders. There is so much speculation that it is jading what is our reality. And the reality is we still don’t know anything.
Do you believe your child was diagnosed with Autism as a result of vaccines?
I personally do not. My son was never a typical, smiling, talking child who received a vaccine and was gone the next day. My son had delays as early as 3 months old and believe me, vaccines were not the cause. I have many years with a science background and I do believe in medicine. I also believe that medicine and science can change in the blink of an eye. One of the many reasons I find it so fascinating. I have always kept an open mind but I have yet to find an article that says the risks of vaccines outweigh the benefits. I just can’t find it.
However, I do believe that vaccines should be separated. Kids on the Autism Spectrum usually have low immune systems and their little bodies shouldn’t be overwhelmed with antigens all at the same time. Absolutely. But not to vaccinate? Child abuse, in my opinion. I ask you- would you rather have a child with Autism or a child who dies from the measles?
New Jersey has a 1 in 54 rate of Autism. Why is NJ so much higher than the rest? Are we vaccinating more? No. We live in a state with chemicals in the air and chemicals on our food. Is that reason? Hell if I know. I do know my progressive Ob/Gyn allowed me to eat tuna once a month and sushi occasionally. Did I cause my son’s Autism? Maybe. But I doubt it.
I think there is more to this story. I also firmly believe that our community needs answers and we need them now. Moms need to know that vaccines are not causing Autism so that they can start vaccinating their children again. We do not need to worry about diseases that were eradicated years ago that are only being brought back out of fear of Autism. Please. Think about it.
Right now, we have the anti-vaccination moms vs. the pro-vaccination moms. We all just need to be moms again. To protect our children, from everything we possibly can.
On my son’s 4th birthday, he threw an etch-a-sketch at my head. Of course, he hit an artery and blood started gushing like I had been slashed with a machete. My other children were horrified, hysterical and completely panicked. My son looked at me and said matter of factly, “I didn’t know you would bleed from your head”. He didn’t apologize, didn’t cry and was absolutely not terrified by the amount of blood pouring from my head. Welcome to life with Asperger’s.
After a quick trip to the emergency room and a big bandage on my face, we went to his My Gym birthday party to celebrate. I strategically tried to place the hair over my bandaged face but it was impossible. I felt like a battered, abused wife trying to cover my secret. At this point, I desperately wanted my son to be like the other 4 year olds in the room. I didn’t want them to know he had the ability to hurt me. I remember wishing that it was my husband that had hurt me. Abusive husbands you can leave. Abusive children you cannot. Say what you want (I am sure I will get a lot of scathing comments) but any special education mom has had at least one moment where they wanted to pack their bags and run. Be honest.
Of course, my son didn’t intentionally hurt me. He lashed out and I happened to be in his path. His reaction is typical of kids with Asperger’s- very literal and almost no emotion. I wanted to shake him, make him understand that he should be feeling sad that he just hurt his mommy. But he wasn’t and years later, he still says “mom, remember when I threw the etch-a sketch at your head? I didn’t know you would bleed from your head.”
I never thought emotions could be taught. I was wrong. Years of behavioral therapy showing my son pictures of faces with different emotions, acting out the emotions and lots and lots of teaching by example have helped him be able to identify and demonstrate his feelings. He has always allowed me to hug and kiss him, but the other day, he hugged me on his OWN!!! Progress.
I will leave some advice for our moms with newly diagnosed children. Hide the etch-a-sketch, Mr. Potato Head can be vicious and you may want to rethink buying any kind of sword/wand or heavy guitar. They can really leave a mark. And remember, above all else, if you are bleeding from your head and you think it really can’t get any worse, allow yourself to be sad and cry. You just might teach your child with special needs how to express emotions.
Life can change in the blink of an eye. One minute, you are singing songs and dancing around your house with your 5 kids, making dinner, pouring a glass of wine to have a relaxing evening with your husband and life as you know it is normal. And you have no idea how much longer it is going to be normal but we don’t think like that. We continue our dance and enjoy the fun night with the kids. And all is good. We will look back on that night as the night before hell broke loose. The night before our whole world changed.
Last week, our daughter was diagnosed with an auditory processing disorder. We knew something was off but chalked it up to immaturity. Sure, she struggled in school but we thought she would pull it together. After the 100th call from her teacher telling us that she was having increasing difficulties, we decided to get her tested. And all I can remember in the past week is dancing around my kitchen with my 5 screaming kids and feeling happy. The rest is a blur.
What I do know is this:
If your child is really struggling, pay attention.
If your child is taking hours and hours to do homework, speak up. It may not be the teacher’s fault (I used to curse the teacher out every night- for this, I am sorry).
If you ask for a child study team evaluation, don’t take no for an answer. We asked a year ago and are now a year behind because they said no and we didn’t fight it.
If your child is increasingly having negative thoughts (I am stupid, I can’t do anything right), listen to them. Do not ignore it and get them help. (especially this one)
It is our job as parents to advocate for our children and the system will not allow us to do that without a fight. It is ridiculous to think that we have to fight to get the help our children need, but we do. It is the most important job we have. Sometimes, we don’t know what we are fighting for. Especially if it is our first time working with a child study team. They really know how to spin it so you think you are getting everything your child needs but I can assure you, you probably aren’t. This is where you need to speak up and ask questions. Ask your friends, your neighbors, an advocate- anyone who may be able to help you help your child.
So, put on “Eye of the Tiger”, get the Rocky gloves out and be prepared for the fight. I guarantee your child will thank you for it someday.
I have had some trouble writing lately. Mostly, because my son has been doing so amazing in his new school that I am having trouble coming up with material. (not complaining) He is happy again, confidence is building and he has three friends. The three friends actually have names which leads me to believe he really has friends. Get it? This is a first...
He hasn’t redecorated the classroom once, books are pretty much staying on their shelves and he hasn’t stabbed anyone with a pencil since the first week. Success!
Today, the tables were turned. My son went on a bowling trip with his school and another little boy threw his bowling ball at his back. Twice. The second time the teacher blocked it (can you imagine how bruised this poor lady’s body must be???) but what amazed me was I didn’t even get a phone call. I am guessing this Aspergers related behavior is so standard they don’t even waste their time on the email/call anymore? Maybe it would take up too much of their day?
It got me thinking. Was it bad that I was actually relieved that he was the one to get hurt and not hurt someone else? I would never want my child hurt but I was beyond happy that he wasn’t the one throwing the bowling ball. And, why on earth, are they taking kids with behavioral issues BOWLING??? With heavy balls? Maybe mini-golf is more like it?
Don’t think I am an insensitive mother- of course, I checked his back and it looks perfectly fine. I hugged him and kissed him and told him we all have bad days. And I reminded him of his bad days and he paused. I think it really got to him. I actually think another little sad boy acting out might be just what my son needs. And I hope, in time, my son just might be able to help the bowling ball kid learn how to breathe and count to 10 before throwing a 10 lb ball at someones back. Maybe, he might even be friend #4.
I love my husband, I really do. But right now I could strangle him. With a dish towel. Or use the kid scissors and cut off more of his balding head of hair. Or simply put some ex-lax in his dinner and see if the shit hits the fan. Literally.
When a woman becomes a mother, she automatically has the innate ability to fight to the death for her children. It appears with the stretch marks and inability to laugh without peeing. She will destroy anyone that stands in the way of her child getting what they need- including the co-creator of the child himself.
Co-parenting is hard with typical kids but insanely hard (obviously- I am thinking about poisoning my husband with ex-lax) with kids with special needs.
Yesterday, we went to see a private school for our daughter who was recently diagnosed with an auditory processing disorder. I pulled up and to be honest, I almost cancelled our appointment. It was a run down house with classes being run out of a trailer. I am not a snob, but it just didn’t look right. I took a deep breath and went in. You know the saying “you can’t judge a book by its cover”?
This school was incredible. The classes were small, the staff was wonderful and the way they taught these kids made me jealous that I didn’t get to go there. More importantly, my daughter loved it. She felt at home- her words, not mine. I was ready to sign her up on the spot.
My husband seemed more concerned about the look of the school than the actual program itself. He envisioned a prep school with beautiful trees and uniforms. I get it. And before you get mad at him, know he is a loving father who would do anything for his daughter and 4 other children (maybe not give me ex-lax and cut off my hair but you get my point). He just isn’t seeing the big picture.
What do you do when you and your husband (or wife) completely disagree on your child’s treatment or where your child should be placed in school?
Dear my beautiful, smart and amazing 9 year old daughter,
Words cannot describe how much I love you. But, I can’t look at you right now. To look at you, see inside you as I so often do, would mean to kill a little piece of me. Because I failed you. And I am so sorry. It hurts to breathe right now, but I know in time, with the right help, we will both be better.
You see, my love, I was so focused on the obvious problems in the house, that I failed to see you were struggling. Failed to see that your grades, although close to average, were slipping below average. I thought you would just be the kid that had to work harder. I did not know how much you were struggling or how lost you felt. You didn’t tell me. Not your fault. I am your mother and I should have known. I am sorry.
It is no excuse that the last 8 years have been focused on your brother with Aspergers. It is true, but not at all fair to you, and something I will have to live with for the rest of my life. My heart hurts for all the times you struggled in school, academically and emotionally and I did not know. I failed you and I am sorry.
I thought you were immature. I thought you were procrastinating. I joked that I would rather stick pencils in my eye than do homework with you. How did I not get you evaluated?
I pride myself on being a warrior mom with a kid with Aspergers. Early intervention began when your brother was months old. You weren’t as obvious and I missed it. I kept thinking you would catch up. I missed it and I will forever be sorry.
My beautiful, amazing, smart 9 year old daughter, here is my promise. I promise I will always do everything I can to give you the life you deserve to have. That will include full testing and evaluations to make sure you will learn the way you need to learn. I will surround you emotionally with peers that make you comfortable and help your self esteem. You are amazing and need to know so. I will listen to you and know when you need help.
We will figure this out and I promise, this time, I won’t let you down.