tag:blogger.com,1999:blog-24647755344521811042024-02-08T07:40:55.572-05:00~ a special child written by his blessed momBlessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-2464775534452181104.post-42994393949466752162011-12-12T00:36:00.001-05:002011-12-12T00:36:32.621-05:00sadly behind!SO much has happened in this journey and I have been busy on the FB support page and new Advocacy page I am running that I forget to keep this journal going. I will fill in the blanks, short stories.
I also need to figure out how we get just a paragraph to show up on the wall and then you can click to "see more" like on FB.. anyone know how to do that? I have checked all the settings but can'tBlessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com1tag:blogger.com,1999:blog-2464775534452181104.post-37882761884972876552011-04-28T21:27:00.004-04:002011-04-28T21:53:34.386-04:00It's not Spectrum, but other diagnoses added and still more testing to be done!Trying to wrap your head around a slew of testing that didn't yield accurate results is pretty difficult. The bitter-sweet diagnoses came down today. I call it that because no parent wants to hear "Your child has Autism" but no parent wants to hear "He isn't Autistic, but unfortunately some of the multi things he does have don't have exact names.
Let's start with difinitives: Zachary is Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com1tag:blogger.com,1999:blog-2464775534452181104.post-11136828533270240962011-03-07T13:26:00.002-05:002011-03-07T13:26:35.474-05:00Aspergers testing coming in April finally!I will fill in the gaps, life is just so crazy I have no time to sit and journal. But it is SO important. We need to journal all our children's lives so that we can help others find their way through the crazy map!
For most of us, there is no handbook, and there is no one to hold our hands. It's floundering out there in the sea of NO resources and help.Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com1tag:blogger.com,1999:blog-2464775534452181104.post-21325728583545083762010-12-02T10:04:00.001-05:002010-12-02T10:08:38.796-05:00My son is hospitalized and I am enraged at the level of care!"Community-Based Acute Treatment (CBAT) is a hospital-diversion program specifically designed to provide short-term emergency stabilization support to children between the ages of three and ten years old who are actively in severe emotional and behavioral crisis." http://walkerschool.org/services/residential-services#cbat
I need to vent. As most of you know my son is in CBAT, he's 5, it's been 2Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-59747035453565210432010-10-24T19:03:00.005-04:002010-10-24T19:17:43.588-04:00The school files (2) 51A's (abuse & neglect) against me (DCF Dept of Children & Families formerly DSS Dept of Social Services)Seems that many parents are being blamed for their child's issues when they do "well" in school, but not in the community. Just because the proper environment, with the right supports are in place and positive results are achieved - does NOT mean the illness, issues etc do not exist for the child.
In my case, the school has blamed me (personally and blatantly at meetings, documented it in FBA (Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com2tag:blogger.com,1999:blog-2464775534452181104.post-4371521790730923482010-10-19T15:31:00.000-04:002010-10-19T15:31:10.489-04:00Does your child do well in school, but not in the community?Can you spare a few minutes to answer 5 questions?
Your feedback is important! We need to band together against this lack in the school system, which in turns shifts blame onto us.
www.surveymonkey.comBlessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-87659212208058214502010-09-13T21:37:00.002-04:002010-09-13T21:37:56.510-04:00reminder to add in Boston Center and Franciscan Hospitalization and all the resources I gathered through these two placesBlessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-17182039906705341712010-08-25T10:24:00.000-04:002010-08-25T10:24:09.892-04:00a plea for a girl who has just a few years left to live - and is just 20Rebecca is 20 - Lafora's Disease is VERY rare takes children in their early to mid 20's and there is no cure. She is a high school friend's relative who was just diagnosed with this disease. Him and his family are all stunned to find this out. We think our life is so difficult, we look at our family and struggle--but there are worse situations and today I am thanking God my son has just mental Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-4397334825811328492010-05-05T16:43:00.003-04:002010-05-05T16:44:38.873-04:00I'm sorry, what?While I understand Strength Based Therapy I do not need to take my son to a "tea party" each week. I need the Therapist to address the messy stuff. She told me that my hostile approach to my son yields no results. Since when did Parental Authority become viewed as hostility? (I'm sorry, what?) Does she need to be shown the true definition of hostile?Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-91480095633615259122010-04-01T10:30:00.003-04:002010-04-01T10:33:43.113-04:00A poem written by Pauline Branton about her special daughter MeganI simply had to share this, posted by Pauline BrantonYou weren't like other children,And God was well aware,You'd need a caring family,With love enough to shareAnd so He sent you to us,And much to our surprise,You haven't been a challengeBut a blessing in disguise.Your winning smiles and laughter,The pleasures you impartFar outweigh your special needsAnd melt the coldest... heart.We're proudBlessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-83676667673551336092010-03-24T12:53:00.002-04:002010-04-05T14:16:53.769-04:00reminder insert sensory note, Psychiatrist apt and genetics recent AND Church handbook!!Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-33850991165007816882010-03-22T10:38:00.004-04:002010-03-22T10:56:01.790-04:00Dakota-my son's dog, eats choc chip cookies! Oh noAs Zachary is on the couch trying to dress himself (yes he is 5 and still cannot manage it alone on most days) he is praying to God.... "Lord please help my dog not be so sick"Dakota is a rescued dog and a scrounger due to that. My fault, left chocolate chip cookies in a ziplock bag WAY up on the counter. Out of her reach, always have food there, but today she managed somehow to get to it.For Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-79142560324351048852010-03-15T16:48:00.002-04:002010-03-15T16:58:28.651-04:00It's exhausting trying to show proof to professionalsWe've just had THE worst week and I don't know if it is because he didn't feel well or another major mood swing hit. It amazes me how hard it is to tease typical stuff and real issues stuff when it is SO intertwined and messy. Society tells us all of it is "normal" so we chase our tails trying to put a square peg into a round hole. Well I am sick of it. And it is clearly not normal.I got Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-25810827051835762622010-03-03T10:29:00.004-05:002010-03-03T10:48:32.260-05:00Get proof of your child's issues on videoI decided to video tape episodes at home and in the community, since school and doctors cannot see the volume of disruptions and quirky behaviors. If a child does well in school, it could mean the setting works for them, not that the issues are not present. Don't let the school system cause you to believe it is "bad parenting" just because they receive positive results within a structured Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-66142248752008292192010-02-26T10:58:00.004-05:002010-02-26T13:37:53.299-05:00ER visit not more than 30 min wait - Floating BostonFloating Children's in Boston quotes this on their website as well as advertising on the radio."We understand the special emotional and physical needs of children. In addition, we believe children shouldn't wait endless hours to see a physician, so most children coming here wait not more than 30 minutes to receive care."830 Washington Street, Boston617-636-5566 Link below under Websites/Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-55665998369524656852010-02-24T11:51:00.005-05:002010-02-24T12:31:13.001-05:00Whatever makes his day easierWhatever makes his day easier is a concept I struggle with every day. How much is too much, when is it spoiling and when is it comforting? How much of my day am I therapist and how much am I parent? For me it comes down to being Co-regulator for my son. Every person is born with a part of their brain (the frontal lobe) which is responsible for the regulation of emotions, behaviors, reactions Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com5tag:blogger.com,1999:blog-2464775534452181104.post-44142939672622447332010-02-24T11:29:00.002-05:002010-02-24T11:31:54.537-05:00a cheer for suport groupsI have joined some nice support groups through FaceBook.. Parents of: Aspergers, Bipolar, PDD, and Sensory Integration. I also joined The Autism Support Network which has a chat site for Parent's of Aspergers. It's amazing what support from other parents brings to your life. We need to be refilled as our children drain us each day. Find your niche of support.Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-26330320338447729262010-01-13T11:36:00.000-05:002010-01-13T11:37:28.615-05:00day 2Just gathering resources I have compiled is time consuming. Luckily I had energy today to do it. Keep checking back as I am adding to the list below.Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-41985896522966630272010-01-12T21:12:00.003-05:002016-03-02T12:50:31.515-05:00can't access resourcesIt's clear there are resources out there, but accessing them is a whole other story. I have found as a single parent, that even the support groups and resources available to us, are difficult to attain. Most groups, classes etc (I have found) do not offer childcare, so the single parent with little supports has no way to attend. One of the first things on my agenda is creating a network of Blessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0tag:blogger.com,1999:blog-2464775534452181104.post-46381960175420225952010-01-12T19:28:00.004-05:002010-01-12T21:12:46.733-05:00Creating a blog ~ Jan 12, 2010I created this blog in 2007... But am just finding my way back now in Jan 2010 - a New Years Resolution.Being a mom of a special needs child is like being a superhero without the cape or special powers. The ability I have to be this little boy's mom, comes from the Lord. Without God, I would fail at this daunting task. I write this in hopes to raise awareness, lend support and create a networkBlessed Mom ~http://www.blogger.com/profile/16974057432411112394noreply@blogger.com0