I wanted to have a discussion about special
needs parenting. Anything related to special needs parenting.
Is there something you would want people to know about your special needs family?
Let’s talk about it.
This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.
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If there is one thing I'd want parents to know is that there is no "one size fits all" to ANY kind of special needs. Even autism has its different "labels", but it all comes down to a child with SPECIAL needs, not a plan like the schools try to organize. I was so sick and tired of the meetings at school and the new people every year around the table, with their ideas they could "fix" my son and turn him "normal" if they went by a specific plan. Well that does not work. They are not "normal", nor do they respond to it. I ultimately had to pull him from the school in favor of online public school, where the only one in charge of his schedule and environment is me. And when it comes to anything regarding a special needs child, you need to LISTEN to them, because they are the only ones that can help you figure out how to raise them.
@theideaqueen That is very very well said. 🙂
@SteveBorgman @lostandtired betsy I have heard a talk on how one person was overwhelmed with the load that God had given him, so he asked the Lord to let him exchange burdens with another person. So God let everyone pool their burdens together and each person could choose a new burden from the pile. In the end, everyone took back their own burdens because all the others were too heavy for them to lift. When I see the stories of other parents, I am awed and amazed at all they have to cope with and the struggles they go through to do the best for their children. Life is not peaches and cream here on the farm, but others have it far worse. My struggles are as nothing to the others.
Karen
I'm just tired of feeling like a walking poster child. My daughter is a rarity in her town and I'm am BLESSED to say it's rare that we are ever not treated delicately when it comes to Carrie. But every once in a while I'd love to have an outing or an evening that isn't about autism, one where my whole family gets to just go and do something like other families do. Every time I turn around, autism is getting in the way, whether it's not being able to stay for the cake and ice cream at a family birthday because everyone's going to sing, or having to watch the fireworks from eight miles away because they're too scary. I know, first world problems, right? 🙂 I adore my child, but sometimes I hate what autism has done to her, and when people talk about how autism is a part of who they are and no one should ever want to "cure" it, I get so angry. I would eat my right arm if I could make it possible for my daughter and my family to have a normal life, and then I feel horrible for thinking that way. There is no end to the guilt and hurt when you're a special needs parent.
@LorcaDamon You have every right to feel that way. What I have found is that many parents with extremely high functioning kids are not in touch with how bad things can get for those of us parenting kids more profoundly affected.
I think any parent would want to relieve their childs pain, whether is't autism related or otherwise.
If anyone gives you a hard time for feeling that way, send'em my way. 🙂
We feel alone… Our DD appears "normal", so people (adults and children) are not not always kind to her, or to us her parents when she has an anxiety attack, impulse control issues, or talks a blue streak about an obscure topic using her stunning vocabulary. (Do you REALLY think I'm going to beat my child with a belt because YOU think she needs it?!?!) Even our now-former pediatrician treated us all poorly. Most of our "friends" – the parents of typicals, can't understand why DD needs her various therapies and inventions "because she is so smart". We have 2 families of friends who have actually tried to understand DD's quirks and have embraced them. (Bless you, Julie, if you are reading this!!) That's it. The others have essentially abandoned us. Our immediate families are finally coming around. She's 9… There is no place in our local school system for DD. Statistically, there is not another single man, woman or child in our village with an IQ as high as hers is, and yet if she were to have an IEP she would need a lot of extra support. So we homeschool, with all supports coming privately and most at great expense of time, energy and money. It often seems we are even outcasts within the special needs community. Though DD has many "Aspergers Traits" as per testing and evaluation, and, she has DX of Sensory Processing Disorder and ADHD, she is not on "The Spectrum"/"disabled enough" to qualify for many activities and supports she would benefit from, or, that we her parents who need support, would benefit from… On a positive note, the last year has seen tremendous growth and many milestone victories! Like learning to ride her bike this summer! Never thought it would happen. We were lucky enough to find a chapter of "Lose The Training Wheels" within an hours drive of our rural-community-in-the-middle-of-nowhere that would except her w/o the Autism label. This year has also seen me discover much about my own "quirkiness", and DH has come to terms with being the only neurotypical in the house, as well as the only one without chronic physical issues. (Rob you can surely relate!!) Above all, we are convinced that DD is destined for great things. When not anxious or impulsive, she is gentle, kind, compassionate, loving and generous. Her heart is pure. She has a delightful sense of humor. And as we celebrate our victories, we know where we've been, and what a looooong way we have come… =)
She sounds like a love and she is blessed with parents as diligent as the two of you!
@Batty Thank you very much for your kindness in replying. =) I really, really appreciate your encouragement.. <3 She is most certainly a love, and I fight great guilt from when we had our own neurotypical expectations for her prior to DX, and for the stress that surely caused her. Regardless of how high or low functioning our children may be, life has thrown us ALL a curve. Our dreams have ALL had to change. We are ALL universal in the suffering we feel as we see our children treated cruelly. We have ALL had to abort family plans because of things weather, time, location, or whatever. We ALL wonder about the future, and what living independently looks like for our special ones. We ALL are weak-kneed after epic meltdowns, and we ALL have it in the back of our minds wondering when the next one may occur. Regardless of how high or low functioning our kids may be, they are ALL special children, we are ALL special parents and we ALL are deserving of equal empathy and support.
@Batty I've heard special needs parenting referred to as a marathon and a rollercoaster. It's a rollercoaster because of the ups and downs associated with our children's progress, and it's a marathon because we're in this for the long haul 🙂
@SteveBorgman I completely agree–I've been at this for 24 years now and there is no end in sight. That is not to say it has been a ride I would have wanted to miss, but there are some parts I would have preferred a different route! Having 5 children where neurological problems abound and are manifested in each can be exhausting and I have certainly felt I was at the end of my tether at various times, but I have managed to hang on! I think my 4th and 5th children are the most difficult challenges I have faced: Tourettes, ASD, ADHD, OCD, ODD, along with borderline personality disorder, possible bi-polar, and schizo-affective disorder. There are days I want to run away from home and never look back but that is not in me to be able to do. We have had to place the 4th child in residential treatment in order to keep her and us safe. Her older sister has serious health issues and she was very resentful of the attention her sister required (doctors, me, school, etc) and began trying to become her sister (e.g., claiming her sister's volunteer work as hers) I am once again hanging on by a thread as my youngest has become self-injurious and suicidal. It never ends. BUT—this is not to say there are not very bright spots as well. The challenges are great but the rewards and joys are greater!
Karen
@Batty @SteveBorgman I'm all to familiar with those acronyms. Something else to remember is that studies have been done that that show special needs parenting is just as stressful a being a combat soldier.
@lostandtired @Batty @SteveBorgman Wow! I would say that the degrees of combat fatigue vary according to how many children have what conditions, and the degree of severity of each of those conditions. Also, does the person with those children have a partner, or are they working solo? @Batty, it sounds like you have a lot on your plate. I'm glad you have this forum's support, at the very least 🙂
@lostandtired @Batty I'm sorry, I meant to say betsy is the one who sounds like she has a lot on her plate.