Special needs mommy's :)

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  • sewist
    sewist Posts: 40
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    Please add me when you can.

    My 9 year old son is low functioning autistic, non-verbal and self-injurious. Fortunately, he is able to make some eye contact and likes to cuddle as he goes to sleep.
    After years of working with the public school, he now goes to an amazing school for children with Neuro deficits where he recieves all the therapies and support he needs to progress. He also has a service dog that helps him stay safe when he is out in the community. While there are tough times, we feel lucky to have him as our son!
  • LainMac
    LainMac Posts: 412 Member
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    Hi Everyone,

    The group

    Super Special Moms

    is now find-able in if you search on the groups tabs. Some of you have already found it on your own. I am so psyched that we are getting together with people who "get us" ~ get what our kids go through and get how hard it is to do right by our children and still save something for ourselves.

    I hope the group to be a place where we can safely vent our problems and celebrate our successes no matter how small. Like "Today I went to and IEP meeting, the SPEd folks were jerks, and I did not over eat."
  • houseofcarpenter
    houseofcarpenter Posts: 127 Member
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    hi, i have 4 children, my eldest is 11 and has aspergers syndrome - he has just started secondary school and we are having alot of problems with bullying which are causing him great anxiety last week he said he didn't want to live anymore - heartbreaking - getting so frustrated with the school and the system he was classed as in a cisis state and they arranged for an emergency meeting next friday!!! lets hope all goes well for us in the mean time!! i have joined your group i think we all seem to have to fight so hard for any type of help x
  • Mootpoint
    Mootpoint Posts: 14 Member
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    @houseofcarpen - my ASD son had the same difficulty during the first two years of mainstream senior school - not a fun time! We finally decided (the school and us and various agencies) that he should be part-time; which is what happens now. It works for him as he always has someone with him in the school lessons he does attend - and he is finally getting the help he needs - hang in there. Have you had a TAC meeting yet? Also, if the school aren't listening, try CAHMS. They really helped my son :-).
  • michellelmcc
    michellelmcc Posts: 8 Member
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    Hi, I am a mom of 4 wonderful, amazing children. My oldest son, 13y has ADHD, 12 yr daughter ADHD, 11yr son with anxiety issues and a 10 yr son with ADHD. My worst times are getting them out of bed and out of the door and bedtime. This cause me a great deal of stress that I usually turn to food for support. It would be wonderful to have support and to support other moms with special need children.
  • KellyKAG
    KellyKAG Posts: 418
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    My daughter is 9 and has a "tic disorder" and makes a horrible teeth chomping noise. When she tries not to make this noise she makes a loud hum in the back of her throat. Its starting to affect her socially in school and i feel so bad for her. She is painfully shy which only makes it worse.

    Then there is my son who is 6 years old and has ADHD and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders).The PANDAS causes horrible worries and OCD type symptoms. He is always very concerned he is a "bad boy" or has done something wrong. He comes to confess something every five seconds and needs nonstop assurance that he is okay and what he has done is okay.

    I'm tired.
  • breezymom81
    breezymom81 Posts: 499 Member
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    I am the Mommy to two special needs- my daughter has a Chronic GI disease- Eosinophilic Gastreoenteritis, she ws formula feed only until 4.5 and in the last 3 years and been able to start eating foods- we are at 10 different foods- all whole (no spices, breading etc) and experiancing a huge set back! So trying some new foods. She is aSuper Hero and will always be my hero, we have under gone so many surgeries I can't keep count -with out our log!

    My son is 10 has the same condition jsut not as severe,

    They are amazing!
  • jaxbeck
    jaxbeck Posts: 537 Member
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    Ohh I would love to be in the group, My 7 year old son is PDD-NOS, most likely an aspie IMO
  • JessicaJoy723
    JessicaJoy723 Posts: 13 Member
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    My son is six and a half years old and at the age of 3 was diagnosed with Autism...then last year we were told he has a rare syndrome called Chromosome 6 deletion syndrome. There's not a lot of information about it but he continues with all of the therapies he received before the new diagnoses. He is also still in the Autism program since he still falls into the spectrum. The only thing I would give anything for him to be able to speak to me. His communication is his weakest area. I hate not knowing when something hurts or to know what makes him happy. It has got to be so frustrating for him at times. Luckily I was also blessed with my daughter who is 9 and he could not have a sweeter more loving sister. Having a special needs child can Dec have its hard moments but someone told me once God gives special babies to special moms. Its my goal to make him and my daughter have wonderful lives and know how much they are loved <3
  • TerraMatris
    TerraMatris Posts: 10 Member
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    hello all...

    ...my doctors put me on a special nutritional program...which has helped tremendously...and now that I am back on "calorie counting" I was hoping this support group was still active.

    Is anyone still out there...and how are you doing?
  • melindasuefritz
    melindasuefritz Posts: 3,509 Member
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    MY STEPSON HAS ADHD-
  • rachso
    rachso Posts: 174 Member
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    Awesome idea. I have a 3 year old who they believe in on the autism spectrum. She was given a screening a couple of months ago and was borderline..so she is going to a case study program at Children's hosp to do a more extensive eval. Right now she has a significant delays in speech and fine motor skills. She is moderately delayed in gross motor but is starting to show minor improvements in that area. She also has Celiac diese--but thats more of a digestive issue.
  • westcoastgrl21
    westcoastgrl21 Posts: 172 Member
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    I would love to join! I have 2 boys: a typical almost-4 year old, and a 2 year old with special needs. He is thought to have a rare form of Beckwith-Weidemann syndrome (genetic testing is pending). He has severe overgrowth, enlarged kidneys and especially liver, seizures, and a severe immune deficiency for which he receives IVIG infusions weekly. He also has global developmental delay but has been steadily closing that gap and catching up with his peers. He has impaired vision (corrected by glasses of course), and appears to be deaf in his left ear. He is pure love and sunshine and the cuddliest guy on earth :) I would love to meet a group of moms who understands the extra demands and extra joys of special needs kids!
  • Odiliawine
    Odiliawine Posts: 116 Member
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    Hello all, Whereas I myself do not have a special needs child I do work at a residential treatment facility for teenagers so I can relate to most of you. I know that these aren't genetically my kids but most days it really feels like I'm mom to 9 girls with behavioral disorders! That being said, I applaud you all for all that you do, I know how terribly difficult insurance companies and schools can be and I know that all of your kids really appreciate all that you do for them- even if they are screaming at you or are non-verbal. Feel free to add me and I'm more than happy to answer any questions about RTF's and adolescents with behavioral issues!

    Good luck to you all!
  • bigcrystal123
    bigcrystal123 Posts: 246 Member
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    Hi my name is crystal i have a 4 year old that has autism and a 2 year old with an extra chromosome and a missing chromosome. I will be finding out what is wrong witg him on the 12th
  • gramacanada
    gramacanada Posts: 557 Member
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    I'm coming in to join. I'm a special needs Grandma. I parent my granddaughter about half the time.
    She has Phaelan-McDermid Syndrome. Basically a gene deletion in chromosome 22.
    She's 11 but depending on the day and what etc etc (you all know) she's between 3 and 7.
    She has major speech and processing delays. She'll never be independent.
    I have another MFP friend I'll bring her in too.l We need each other!
  • stephv38
    stephv38 Posts: 203 Member
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    This is a wonderful thread. Many many kudos to all you mommies.... I am a mom of 4, one of which is adopted. He was born addicted to heroin and meth and took 6 weeks to detox on morphine. He is almost 4 and the behaviors are beginning to present themselves. Attention shortfalls, impulsivity, oppositional, and sensory seeking. He is also very smart, funny and loving.
  • tara_incognito
    tara_incognito Posts: 1 Member
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    Hi, I'm Tara. My younger son (almost 4) is autistic. I have an older son (almost 6) who I suspect is also on the spectrum but who hasn't been evaluated yet. I'm so glad y'all are out there!
  • dcarre_34
    dcarre_34 Posts: 4
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    I adopted a drug baby who has mild autism and a small deletion of the 16 chromosome so he is developmentally delayed and is kind of socially awkward at times.. He is actually turning 8 tomorrow and so proud of him because he has come along way since I first got him. He is quick to tell me no, you can't have that you're on a diet!

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