Just as there is a spectrum of autism, there is a spectrum of fear. For some, it's fear of the unknown. For others the fear is more palpable.Read More
Since I last wrote about our challenges with Brandon I have been overwhelmed with abundant support and kindness from everyone. To the point that I haven’t had time to answer all of the lengthy and truly appreciated emails of support and stories that have come in. (I’m working thru it in-between work, I promise I will write you back if I haven’t yet. I’ve just been busy night and day for weeks!)
But first let me tell you about the last couple of weeks because they’ve been amazing. We’ve gone from daily, stressful, I’m-not-sure-how-much-more-I-can-take tantrums to one single tantrum that diffused faster than ever in TWO WEEKS!
Three weeks ago (ish?), I filled out a 300 question (!!!) child development inventory that was intended to get a general idea from our perspective of where Brandon stands with development in a number of areas. The result? All areas came back significantly delayed except for one. It’s not at all a diagnostic tool, but I felt it was useful in guiding our specialists in where to start.
If I filled out that questionnaire today many of my answers would change. Many of them. Possibly even half.
I’ve seen progress since that inventory that has amazed me. Behavior, communication, they’ve both been astoundingly good (relative to before).
I have no clue what happened. Brandon’s daycare teachers are sad that he’s leaving because he’s been such a joy and that makes my mama heart so proud. I’m equally sad as we have grown very attached to the five or six lovely women who are responsible for his care while we are at work.
This daycare centre was but a temporary stop from the beginning. We knew it. They knew it. Next week he starts at the daycare attached to his school. And though we’ve gone in and met them and I feel good about the environment he’ll be in, I’m very scared of the transition.
I’m trying to temper my fears because children are far too perceptive for me to let those fears take deep root. I don’t want him to sense my fear of this change and make him insecure. I want him to flourish and thrive through it.
But the hard part is that he’s in a good place right now. He’s happy, having fun and excited about everything (for the most part). We’ve had so much fun with him the last couple of weeks and I just don’t want this change to disrupt that.
I thought we’d have to be very careful how we prepare him for next week. Tell him too early and we risk great disappointment and upset leading to a major tantrum when he doesn’t get what he wants now. Tell him too late and we risk great disappointment and upset leading to a major tantrum when he is forced to do what he doesn’t want to do now.
Much to our surprise, our current daycare centre took the initiative to begin preparing both Brandon and his fellow classmates for Brandon leaving after this week. They’ve been brilliant, celebrating the time he has left with them and getting him excited about where he’s going. When I walked in Monday evening to pick him up, half of the children gave Brandon hugs as he left. I was so touched by these children and their unconditional friendship to Brandon. I don’t know if he feels attached to any of these children, but they clearly like him. One even asked him to come to her birthday party as he was leaving, which was so sweet.
To say that this change had my nerves on edge is an understatement. Yes, I’m aware that what I describe is no different than any child. There is a difference, though, and I find it difficult to quantify other than that my little boy has so often upset himself to the point that he passes out (asleep). These “tantrums” are the direct result of being unable to reason with him about things that other children deal with differently.
We haven’t had to deal with that level of upset in two weeks. It’s done wonders for our stress levels during a time when we were a bit stressed about some other areas of life. Thank goodness he chose now to calm down, even if it’s only temporary. I still don’t know how to communicate effectively with him to prevent his upset. That’s a challenge that I know we’ll work on until we find the answer.
All this past weekend, I kept thinking about how thankful I am to have him, regardless of what’s going on. Today I got word that we’ll have an appointment with the Developmental Pediatrician in just two weeks. I feel optimistic, no longer alone, and I needed that.
I want to leave you with this video. This is excerpts of Jason Goldsmith, who founded The Big Blue Hug, speaking at PAB about his son, Ellis. I wrote about this a couple weeks ago, but the video wasn’t quite ready. I think when you see it, you’ll see why I was so profoundly affected by hearing Jason.
He spoke to me right where I’m at in life. And that is powerful.
I just read a post over on PhD in Parenting that has me kind of fuming. My thoughts are far too long to include as a comment, so I’m writing about it here instead.
I have resolved a lot of my feelings about this over the last four years, but I’ve had this come up a couple of times recently and Annie’s post was enlightening in a way that no other breastfeeding information ever has been. This list of reasons (that are identified as myths in Annie’s post) why women are encouraged to supplement with formula in hospital that reopened the frustrated wounds of my failed breastfeeding experience:
- Your baby is hungry
- You were sleeping and I didn’t want to wake you, so I just gave him a bit of formula.
- Your milk hasn’t come in yet. We’d better get him on a bottle.
- Your baby has low blood sugar.
- Your baby is crying a lot.
- Colustrum has no nutritional value.
- It will cure jaundice.
- Maybe if he has a bit of formula, he’ll know what it feels like to have a full tummy and that will make him interested in nursing.
- Your baby’s blood sugar is too low.
- Since English isn’t your mother tongue, you should really just formula feed.
The three that are bolded? Those are all things that I was told or led to believe. Let me back up and tell you a bit more of my story interspersed with information I have learned since giving birth.
I have polycystic ovarian syndrom (PCOS). I was diagnosed 10 years ago after miscarrying my first child. (Wow…I would have a nearly ten year old this year if that hadn’t gone the way it did.) My GP who was caring for me until I got to 30 weeks should have been closely monitoring me for signs of gestational diabetes, including ordering the GD testing early - at 24 weeks or earlier instead of the usual 28/29.
I entered the diabetes clinic, was monitored for blood sugar regularity and size of the baby. At 37 weeks, when an ultrasound estimated that Brandon was about 9 pounds, I left the ultrasound clinic in tears, knowing that my doctor was going to recommend c-section. She scared me into it and that’s all I’ll say about that. Yes, my son was 10.5lbs at birth, but women CAN give birth naturally to large babies - it’s not the end of the world. I did not want a section. I was (and still am) terrified of surgery. Should we decide to have another, I will go for VBAC - no doubt in my mind.
Prior to giving birth or even being pregnant, I did a significant amount of reading about PCOS, the symptoms and effects on my body/life and how to manage it. Not once did I ever read anything about low milk supply. I have no idea how that significant and frustrating fact escaped me. It wasn’t until my pre-op, 5 days before my surgery that the nurse (also a lactation consultant) raised the red flag to me.
I went home in tears. I was having a c-section, which is known to complicate breastfeeding AND I had a broken body that may not work right. Talk about stress and frustration and bad timing!
Fast forward to nearly a week later. I’m blissfully unpregnant, staying as still as possible so as not to disturb my incision and my Friday night nurse makes a helpful suggestion. Brandon really isn’t getting enough to eat from me. He’s wanting food more often than every three hours (no mention of the possibility of breastfeeding on demand). She offers to help me with lact-aid. Brilliant! I can supplement and still get the benefits of breastfeeding.
We did this Friday and all day Saturday until the night nurse arrived in my room just after Matt left for the day for the regular feeding. She immediately started to tell me that I needed to decide what I was going to do when I got home because we couldn’t do lact-aid at home. Oh, did I mention that this was about 11:00pm? Yeah, her timing was awesome. Not to mention that she didn’t once tell us WHY we couldn’t do it at home.
She delivered this news while she also informed me that I was doing everything wrong, despite the fact that my son had latched like a champ for two days with no problem. She proceeded to put her hands in front of his face so I couldn’t see what I was doing to get him latched on. This resulted in repeated failure to get him situated. She even shoved the lact-aid tube so far into his mouth that she choked him once. He had his first screaming fit that night thanks to the nurse from hell. And I had my first breakdown.
After she left the room and Brandon was settled, I called Matt in tears. He returned to the hospital and found said nurse to have a little talk with her. Then he stayed with me until 2:00am when we were to do the next feeding so that he could handle the lact-aid without needing the nurse from hell to help. This didn’t stop her from barging in my room and delivering pamphlets on how to bottle feed and the process to sterilize bottles. I refused to say a word or even look her in the eye, I was so angry. Her audacity still amazes me. If I had a baby in that hospital today and she walked into my room as my nurse, I would tell her to go switch with someone else. I can’t believe someone like that is allowed to work in a birth unit.
The day after, shift change brought a kinder more level-headed nurse who gently explained that lact-aid had to be used with the supervision of a certified lactation consultant. Ah. Okay. She helpfully provided some formula samples and we packed up and left the hospital and made a trip to the drug store to rent a breast pump and purchase bottles and formula, which I hadn’t bought before because I hadn’t planned to use them.
Five days post-partum (and the day after we were released), I attended the hospital’s breastfeeding clinic where the LC recommended that I obtain some Blessed Thistle, Fenugreek and ask my GP for a prescription of Domperidone. I stopped at the health food store on the way home for my herbs and called my doctor right away. Her nurse practitioner called me back to say that she wouldn’t give me the prescription despite the fact that all eight OB/GYNs at the hospital I where I gave birth recommend it for helping with low milk supply. I never went back to that GP again.
I was able to obtain a prescription from my OB for domperidone, but not until a full two weeks post-partum. The herbal supplements had already helped, and I saw a difference with domperidone, but no one ever told me to just let the baby nurse as much as possible or feed on demand. I was told to feed him for 15 minutes on each side, then pump for 15 minutes. The process was exhausting and it really didn’t help my milk supply improve.
Little chronological side note: At my six week checkup, my OB saw something made her question me - it’s a symptom of my PCOS and I told her I had it. My GP had not informed her when she referred me to the OB. That cemented my decision to never go to that GP again. Lesson learned, though: Do not assume your doctor is doing their job well - they could be missing key steps that have a big impact. My OB needed that information while I was pregnant, not after.
I took domperidone for eight weeks. I didn’t risk asking for more than that because my OB was annoyed that she had to be the one to prescribe it. We rented the breast pump for eight weeks. But because we were buying more formula all the time, and the domperidone had run out, I returned it. I’d continue giving Brandon breast milk as long as it lasted and let nature guide me.
At just shy of three months, Brandon turned away from me for the last time, refusing my milk because there just wasn’t any there. The drip, drip of that faucet was quickly silenced and as much as I tried to tell myself I did everything I could, I knew there was probably more I could have done.
I wasn’t wrong, as I’ve learned in the years since. I may never have been able to build the milk supply needed to breastfeed my son exclusively, but I think the system failed me in a number of ways. It’s been a learning experience that will inform my decisions in future should we have another child, but it frustrates me to no end that I could have and should have had a better chance.
Maybe by sharing my experience other moms can learn from the mistakes I made in ignorance. But most of all, follow your gut. First time moms should have a voice that is every bit as loud and confident as second, third, etc. moms. If something is bothering you or you disagree, speak up. If your doctor or other caregiver isn’t giving you rational reasons for their recommendations, find another opinion and don’t put it off. Do your research, because you have to be your own biggest advocate in all areas of health - for you and for your child(ren).