Discipline

One of the hardest tasks for a Mom of a child with Special Needs is discipline. When do we say “No”? How do we assess whether the child can legitimately do something and when s/he can’t. What is reasonable to expect? What is a reasonable consequence, if we even accept the idea of consequences. When do we advocate for them without giving them a sense of entitlement or infantilization or helpless dependency. Do our other children think that the child with Special Needs gets away with too much? Do our husbands think that, too?

I wish I had the answer to all these questions, but I think it has to be addressed and assessed individually in each family. One thing I do know is that if we find ourselves getting unreasonably angry or judgmental or disgusted with our child, then something needs to change. It could be that some limits need to be set, or that some limits need to be enforced. Or it could be that our limits are too demanding, too harsh. Or it could be that we need some rest and recuperation. Or maybe we need the companionship of someone who will understand. I hope you can find that here.

I was raised so differently than how I parent. My mother was an angry, resentful woman who probably should  never have had children. I love the cocktail napkin that shows the woman serving cookies and the speech balloon says, “My secret ingredient is resentment.” Yep, that’s her. She thought I was overly sensitive and she could not “be with” my feelings, especially anger, sadness, or fear. I knew there must be a better way, which is why I became a child therapist. But when you’ve not had “being with” your child’s feelings modeled for you, it is not easy to do this.

The first thing is to be aware of what’s uncomfortable. For me, it’s fear primarily. My parents hated my insecurity and thus they pushed me unmercifully and shamed me when I was afraid. I stayed afraid.....for a long time. I remember one of my first therapists (yes, I’ve had a few.....therapy has save my life, literally) asking me if I felt anything else but fear. She told me I should try on some other feelings. But I was stuck there....at that time. It seems that when a feeling is denied over and over, we cling to it; just as our children do. It wasn’t until I had true compassion and understanding of my fear that I could be with it in a loving way. And that love had to come from me. I had to embrace my fear, know where it came from and why, and then I could emerge from it.

Therapy definitely helped me do this.....but ultimately it is up to me...and you.

My daughter is insecure. No big surprise there, really. I tried talking her out of it, proving to her how competent she was, shaming her, screaming at her to get over it, and then I finally remembered my self at her age. Then I could be with her in that feeling. I told her how I cried every night when I came home from school saying my homework was too much and too hard. I felt overwhelmed, incompetent, stupid and scared. And this from a late teen/early adult who got straight A’s, met with admiration from teachers, and jealousy from classmates because I ruined the curve. You see, it’s the feeling  that has to be accepted and comforted and loved. When my daughter heard about my insecurity, she softened and our talk deepened. It was hard to listen with all of my heart and soul. 

I had to check my own insecurity of her being insecure.

In an effort to help a parent look at what feeling might be most difficult to “be with”, write down some uncomfortable feelings that you have. Now imagine the kindest, most attuned mother you can, and see how she handles”being with” you and this feeling. Listen to that little girl inside of you who is crying and hurting. What does she need. Imagine her soul mother comforting her, holding her and listening to her.

Going to the Dentist

Going to the dentist

When you have a child with Special Needs going to the dentist can be a nightmare. Again, all their sensitivities make shots of novocain almost impossible to administer because most of these kids are deathly afraid of needles. And then where do you go from there with no numbing? Often a refusal to open their mouth.

Getting braces was excruciating. When they put the gel mold in his mouth for an impression, he gagged and threw up and they had to start over. I tried everything to help him.....breathing with him, telling him jokes to distract him, squeezing his hand, telling him to look at me and we could do this. Finally the third time he managed it. I was drenched in sweat. It was so tempting to yell at him and tell him to “Just do it!!!”....something my mother did to me. I felt like everyone in the packed office was staring at me like I was an ineffectual Mom.

Then came the braces and the hygiene required to maintain them. His Dad brought him for a check up one day and the dentist came into the waiting room and called his Dad out for not enforcing good teeth brushing. The orthodontist threatened to take the braces off next time if his teeth were not better maintained. Purely shaming....for father and child. His Dad never wanted to take him to the dentist again.

When it came time for him to have his wisdom teeth out, I tried to prep him and be there for him. We had to make two attempts. the first ended in him breaking down and saying he just couldn’t do it. The second time I gave him some valium prescribed by the dentist. 

It is such a helpless feeling for a mother to see her child panic stricken and still needing to have the medical procedure done. The wisdom teeth extraction did happened, but a month later the incision reopened for the 4th time and this time a kitchen towel soaked with blood was not stopping the hemorrhaging. I was so done with that dental clinic! I called the best oral surgeon in town in a state of ultimate panic. They got him in in 20 minutes. But then came the directive by this dentist to open my son’s mouth. He refused. He was in a state of trauma and panic. The dentist was a saint, but time was ticking and he had other patients waiting. I used every means of understanding and compassion that I could to get him to open his mouth. I used relaxation techniques. Nope. Wasn’t going to happen. So I had to resort to extreme measures. I told him if he didn’t open his mouth, I would have to take him directly to the hospital because he would die if we did not fix this immediately. That worked, thank God! He got stitched up and healed very nicely. 

I did write a letter of complaint to the first clinic and cc’d it to the American Dental Association. They sent me a check for the cost of the oral surgeon. That helped compensate me financially, but the toll it took on my son emotionally was immeasurable, because as a result, it has been an even bigger ordeal to get him to the dentist now. One time we had to resort to sedation dentistry to fill a few cavities at once. That is extraordinarily expensive and wiped him out for the whole day. Do you know  how many days of work I have missed to deal with dental issues for this child? It doesn’t really matter. Finally, I have found an empathic dentist who specializes in work with Special Needs kids and my son handles the dentist beautifully now. Email if you want his name and number.

Who Am I Other Than Mother?

Seriously? I forgot who I was, other than mother, when my daughter was young. But then again, I had a child with Special Needs and felt that being her mother was the only thing that mattered other than my work as a professional Marriage and Family Therapist specializing in Children and their Families. I think I became a therapist so that I would learn how to do this mothering thing, since my own mother was not someone I wanted to emulate. I came from authoritarian parents who believed in spare the rod and spoil the child, shaming, and “get over it” when it came to upsetting feelings. I knew there must be a better way; and I was going to find it, master it, and implement it.

So it was with the greatest joy that I brought my one and only child, a daughter, in to the world, 26 years ago when I was a 38 year old Mom. Fortunately I made it through her childhood and adolescence and am now on the other side with time to re-discover who I am other than mother, while at the same time enjoying a close relationship with my college student daughter.

Mothers of children with Special Needs are a breed all their own. Wait, first....what do I mean by Special Needs? It is a broad term incorporating children on the Autism Spectrum, adopted children who may or may not have Reactive Attachment Disorder, Downs Syndrome kids, children with chronic illness, kids with extreme acting out behavior, and so on.   While mothers of these children share many of the trials and tribulations of parents with typical children; they have their own kind of agony of isolation, worry about the future, wondering if the child will ever be able to live independently, what will become of them when we parents are gone? And then in the present there is the embarrassment and mortification of their behavior in public, often their lack of friends thus making the parents their only social contact, the learning issues in school, sleep issues, food issues, maintaining good hygiene issues, to mention a few.

And in most families with Special Needs children, the mother is a stay at home Mom orchestrating all the appointments, from OT to Speech therapy, to tutoring, to psychotherapy. And usually figuring out the insurance papers (if they have insurance) falls to the Mom. The Dad is usually working his tail off to pay for all this. The toll it takes on a marriage and on the other children (if there are others) is enormous, as well as the financial drain this puts on the family.

Let me say that I don’t think for one minute that any of us would give up what we have done for our children. They bring us the gifts of patience, compassion for others, humor, a deep love connection, self reflection, courage and the gift of accepting what is.

How do we begin to listen to our own being, our soul, our wants and desires? First by thinking about what we have ignored or neglected in ourselves since becoming a mother. And then by looking at what we want to cultivate in ourselves. In the Mom’s group that I run with my colleague for Mother’s of Children with Special Needs this is what we are hearing. We want to create, paint, act, sing, exercise, gab with friends, have alone time, develop a spiritual practice, meditate, read, write, become more financially independent, see movies, have a Voice, go back to school, and be playful and happy without so much worry. In the coming weeks we are going to explore some of these themes.

Tell me what you have neglected and what you want to cultivate.

Introduction to Moms Soul Sanctuary

I was pulling my hair out. My daughter was 15 and in her room 99% of the time. I could not get her to talk to me, much less do anything with me. And I am a child and adolescent therapist! She ate only pasta, never exercised, called the out-of-doors a “foreign land” and never did any extra curricular activities at school. Yes, she had difficulties, but I was drowning in guilt, depression, and alienation from my friends with typical children. I didn’t know where to turn. Who could possibly understand what I was going through? My parents told me to go to Kaiser for meds....for me!

Then I met my friend Cynthia who has a child with autism and who is adopted from China. We started our own Mom’s group for US....Mom’s who are hurting, and sad, and isolated, racked with guilt about what they did or didn’t do, and Mom’s who needed to talk without being given advice or without being judged.

About 5  years later, Cynthia and I, both licenced therapists, decided to offer a group that could be like a sanctuary for these worn out, depressed, taxed to the max Moms who were suffering alone. What we offer is a place to reflect and share what it is like to raise a child with special needs.....what it is like for the Mom, as well as how it impacts their relationships with any other children they may have, how it impacts their marriages, and how it impacts their social relationships. But mostly it is about the Mom and Her soul, a place for her to reflect and gain some insight into who she is as a person, not just a mother.

I’d like this blog to be about that....the soul of us mothers who raise these children.....our hopes, our fears, our dark places, our light places.

One of our themes comes from Mark Nepo’s Book of Awakening: “Giving voice to what is inner is essential to surviving what is outer.”

Another theme comes from Kristen Neff who wrote a book on Self Compassion. We hold ourselves with compassion and love, no matter what.

A way to get some resources internally for a troubling situation is to do a bit of writing, such as the following.

Describe in writing a safe place for you, real or imagined. Get it as detailed as possible.

Describe a nurturing person, either real or imagined.

Describe a protective figure or animal, real or imagined.

And finally describe a wise/spiritual person....real or imagined.

You can write about these, you can visualize them, you can collage them or paint them. And when you think of your troubling situation, you can use one or many of these resources to help you. Listen to them, observe them, see what they have to offer you