re: Any special needs parents here in the OT? ADMIN NEEDED

Dad to an 11 year old boy with severe autism.

He has a twin sister and a younger sister, and is the joy of my days. You do have to learn the pace of their progress-- landmarks are very different, if you have neurotypical children as well. If you do, find ways to make things family oriented for them as well; you don't want them to feel as though they get less attention, or that their sibling is somehow a burden to them/someone for them to resent.

We're blessed in the closeness of the relationships our boy has with his sisters; they are his best buddies and biggest advocates. They are the first ones to worry about him, and the first to come up with ideas of how to integrate him into plans.

The harder parts: financially, it can be a real kick in the arse. It will put a strain on your marriage as well, as no one plans for the challenges that you never knew were coming.

The best part: Unconditional love. It sounds like your girl has a great starting point.

The woman that I see has a daughter (who just turned 20 on Tuesday) with DS. She is one of the most delightful and lovable people I know.

I have found out a lot about kids with disabilities and what parents do for them. It is a lot of work, but my SO is her daughter's greatest advocate.

Parents need to be vocal in making certain that school districts do what is necessary for the child. My SO has read a lot; has met with other parents a lot; and has consulted attorneys who deal with disability law a lot. From what I have seen, parents of children with disabilities are more than willing to share with other parents of kids with disabilities. It is a tremendous resource.

Also, contact your local branch of the National Down Syndrome Society.

My SO's daughter has only 2 more years of aid (she is a a wonderful school in MASS). It ends at 22. At that point there is other assistance but I am not certain about that.

I wish you, and all parents who give a loving home to a disabled child, all the best. God Bless.

yep. youngest daughter has ds.

it takes a little adjustment to be sure, but she is the absolute happiest girl in the house. usually smiling and adores her sister.

there are some days where she gets stubborn, but those are very far and few.

it’ll be difficult initially, but you’ll come to the realization one day that you wouldn’t want them any other way.

Thanks blight and hater. It’s easy now. All she does is eat, poop, sleep. She’s started to smile recently and it’s the cutest thing ever. Older sister loves her to death already. She’s only 18 months. When she hears her cry she runs over and tries to put her noopie in her mouth for her. She grabs MJs hand and put it to her nose and tells her to say nose. I asked one gentleman who I spoke with about his son with DS and about the walking milestone. He said his son started late, around 18 months or so. I just kinda chuckled to myself. Our “normal” child just started walking around 18 months. Guess we just never know.

Collefbrules, mind shooting me an email?

On Facebook I saw a video of about forty mothers with four year old, DS kids, one Mom and one kid at a time signing a song about loving them for a thousand years or something and the #wouldnt change a thing.
They made you aware of how fun an ordinary it can be.

I don't have children but my youngest two siblings are mentally challenged from neurofibromatosis (I don't carry this gene..had extensive testing done to determine this...so I cannot pass this on to a child).

Because they are 8 and 10 years younger than me...as they grew up I helped care for them(babysat, etc). I always felt fiercely protective of them(and still do). They are 30 and 32 now but act more like 12-13 year olds. Now that they live closer to me I love spending time with them and taking them to new places to just see how simple things make them happy. When my parents pass away they will likely have to live with me and my husband the rest of their lives or live in a group home type setting.

When I worked in pediatrics I cared for many special needs children. The DS babies and children I cared for were always so sweet and loving, even to us nurses and I always enjoyed caring for them. Like someone else mentioned...there are some DS children that are more delayed and some that are more highly functioning.

It always amazes me the parents of most special needs children. Most of them are so incredibly attentive to these kids. I don't know your beliefs..but I truly believe God gives these parents an extra reserve of something to be able to care for these children with the level of devotion I have witnessed.

Congratulations on the birth of your daughter! Remember she is your daughter first. Person first, diagnoses second ( my child with Down syndrome as opposed to my Down syndrome daughter)!

I have a 34 year old daughter with Down syndrome. She lives in an apartment semi-indepentently meaning I have 3 daily shift of girls that stay with her as companions. She is smart, has the best self esteem, is an athlete, a Christian and a prayer warrior. She loves everything LSU, can follow a game better than me and will never miss watching the games. When I had my season tickets, she rarely missed a game in Tiger Stadium. She dispises everything Alabama and refuses to wear anything red. She loves to participate in Special Olympic events. She bowls, runs track and field, swims and cycles. Her many medals over the years could fill a large bin.

Baton Rouge has a Down Syndrome Parents Support Group. They are not as active but do have a huge celebration in October for Down Syndrome month.

It's very important for your daughter to get early intervention. I'm not updated on how to get therapy, but Families helping Families can help you with this. Also you can call the ARC of BR. The sooner she starts getting gross and fine motor therapy as well as speech therapy the better the outcome.

Most of all, just enjoy your daughter!

We have one that is a twin and we had both SIUGR (selective growth) and Twin to Twin. He is much smaller than his brother and they have very different personalities. The smaller has a speech problem and has tubes in both of his ears. They diagnosed him with autism but said it's just a precaution to keep him in special services. They really can't tell if he is autistic or introverted and doesn't like to be around others because of the speech barrier. He plays with others outside but won't inside.

Anyway. He has an IEP with the elementary school that started from early steps. The speech therapist that came during early steps was amazing. They helped us with the IEP for the daycare. Since then, we go to LSUs Emerge center and they are simply amazing.

My 3 year olds are extremely smart and it kinds of runs on my dad's side to be extremely smart and introverted. None of us are extroverted at all.

Bottom line. Don't compare against other kids, get early steps, get an IEP, look into Emerge, and be patient and work with them.

(no message)