Moms of Special Needs Children

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Comment by Maria-Helena Uribe on March 30, 2011 at 12:56am

"Give yourself fully to God. He will use you to accomplish great things on the condition that you believe much more in His love than in your weakness." Mother Teresa

Comment by Maria-Helena Uribe on March 29, 2011 at 11:05am

Amylisa,

Thank you for sharing that beautiful quote...  well said!

Comment by Amylisa C on March 29, 2011 at 7:33am

Just wanted to share this quote that I have up on my refrigerator....it blesses my heart so much.

'Every child with Down Syndrome, every adult with special needs, in fact every unwanted, unborn child, every person who is poor, weak, abandoned or homeless - each one of these persons is an icon of God's face and a vessel of His love.'  Archbishop Charles J. Chaput of Denver, October 16 speech to Phoenix Catholic Physicians Guild.

Comment by Maria-Helena Uribe on March 26, 2011 at 12:22am

Hi Mary

It sounds like we have a lot in common!  JoPa is also inconsistent (He'll do or say something once and then we won't hear or see it again for a long time!  Kind of seems like flukes) and it takes him a long time to learn new things. 

I'm glad that today was a better day for you.

You know, at first I felt awkward joining a group for "Moms of  Special Needs Children" since my JoPa has not ever been given a diagnosis.  There is nothing "wrong" with him, and yet there IS!  When I go to the Outpatient therapy office with JoPa, I am often reminded that there are many other children and parents out there who are dealing with so many things/issues/diagnoses which are very different and difficult and it reminds me of how blessed that JoPa and I truly are...  And yet, we all have something very special in common...  We love our children with all our hearts and will do anything we can to help them in whatever way we can...  and as my brother rather harshly put it, "What if JoPa never catches up, what will you do then?  Are you ready to handle that?"  The answer is YES!!!!  I will love my JoPa no matter what - if he remains in special ed, if he mainstreams into regular school - it doesn't matter!!! 

I am so grateful that our Church steadfastly reminds us that ALL life is Precious, and all of us - special needs and (so-called) "normal" people alike - we ALL have a purpose!!!  That purpose is - ultimately - to get to Heaven and to bring as many people with us as we can ;).  JoPa has already touched more peoples lives in such positive ways...  he is truly my "angel".

Comment by Mary R on March 25, 2011 at 5:43pm

Thank you, Maria-Helena! I did go back and read your old posts just now, and I have tears in my eyes. I just switched doctors, too, because I also felt I was being blown off as "just an overly worried mom", so I sort of know what it's like. No one would listen to me that I thought Jake was "floppier" than my older son, or that he drooled and chewed on things too much for his age, and I still think he's stuffy in his head a lot more often than the average chil.  And I do think my son's issues are worse because he ate gluten for a year, but I can't blame the doctor or myself for that part. My husband tells me all the time that God gave me Jacob to get me to be more patient and trusting, just like you said, and I know he's right, but it's hard. My husband has been trying to get me to think about all the good things about Jacob being delayed - he's not at all attached to toys or selfish or aggressive at all. He IS usually very happy and content. Last night I talked to a very good priest about it, and he basically agreed with my husband's much more laid back approach and told me to listen to him and not to all the rest of my friends/family that are stressing out and think I need to take him to every therapy and class imaginable. I still plan to continue with the occupational therapy, but perhaps God has his own reasons why the speech therapists are booked up for months out. So I felt myself letting go last night, and then today Jake threw a ball for the first time ever and brought my purse to me and said "Mama" very distinctly for the first time since he was around 12 months! :) Who knows how long it will be before he does those things again (he's very inconsistent with his developmental achievements) but I'll treasure the memory. Thank you for your support and prayers.

Comment by Maria-Helena Uribe on March 24, 2011 at 11:24pm

Hi Mary!  I just saw your note...  hopefully you have scrolled back a bit through the previous posts...  there is a lot of advice and encouragement.  My first post, back on "June 20, 2009 at 11:24pm" was my introduction to the rest of the group...  you could scroll through the pages if you want...

That first post was full of pain and desperation, I still tear up when I read back...  My note on February 24, 2011 might show you the insights I have learned over the last few years.

My advice to you would be the same that I shared with Claudia on that day.

No one has ever diagnosed my Joseph Paul with anything except for Duane's Syndrome (crossed eyes).  I guess PDD could also be a label for my Joseph.  The only thing they know is that he has lots of Developmental Delays that they can not explain.  So, in an effort to keep providing services to him, they gave him a psychological exam in January 2010...  she gave him the label of "mild mental retardation, more specifically borderline intellectual functioning and expressive/receptive language disorder".  While I do not agree with this diagnosis, I am grateful that he is continuing to receive services -special ed Pre-K, diapers & MediCal. 

You will find out why I think he is the way he is if you look back at my other posts.

I have 5 children... Joseph Paul "JoPa" will be 4 in 3 weeks, George is 6, Patrick is 8, Enrique is 10 & Theresa is 12... all 2 - 2 1/2 years apart.  I still have a hard time getting time in to take care of my own needs (eg:  I have been trying to get a shower in all day to no avail).  I had to run Joseph's stool sample to the hospital today among other things...  but I am grateful that my oldest are able to help me out with the "baby".  You, on the other hand have 3 preschoolers and are pregnant and your 2nd child is the one with special needs (as opposed to the youngest, like me)...  honestly, you have every right to be feeling overwhelmed right now!!!  Just do not allow yourself to despair!!  (really, read my Feb post if you haven't already)  I can not imagine having 4 preschoolers at once!!!  You are an amazing Mom!!!!

You need to build up a great support team for yourself and little Jacob...  you need to not be shy to have people come over to help so that you can lock yourself in your room and enjoy a relaxing bath/book/nap/etc or to go out to run errands on your own.  Ask your hubby to take care of them now and again so that you can hang out with a girlfriend or go to a movie.  Don't feel guilty either...  you have to take care of yourself or you will not be able to take care of your kids very well.

My little JoPa is almost 4 and says only a handful of words, he knows only a few signs and yet he continues to amaze me every day!!!  Like you, I have no idea IF or WHEN he will catch up and be "normal", but after having had over 3 years to deal with these issues, and LOTS of prayer...  I have found a peace which I'm sure only comes from God!!  You too shall have this peace, in time.  I still have emotional days... today was one, as the drive to VCH with JoPa's stool sample was an emotional reminder of the many other stool samples I have left there those years ago, including the one which revealed that he was close to dying of C-Difficile.

I'm sorry for writing in circles, you really would need to look at my older posts to get the clear picture of JoPa's story...  I'm sure that this one is already too long (as are all my previous posts) so let me close by saying that I will be praying for you...  and that you are NOT alone!!!  God Bless!!

Comment by Mary R on March 24, 2011 at 4:16pm

Hi, I just joined this group, and I am very overwhelmed right now. I have 3 children: Joe 4, Jacob almost 3, Katie 14mo, and am expecting another little boy in July. My #2, Jacob, was just diagnosed with mild pervasive development disorder last week. He did not meet the criteria for full-blown autism, mainly bc he's too social, but has some of those behaviors. He is also hypotonic, which has caused fine and gross motor delays, and has a major speech delay - he'll be 3 in May and hardly says any words, less than 10, and those he does say are very garbled, almost like someone with cerebral palsy. I am having a very hard time with all of this, especially with all the trips to the therapists and doctors. I am struggling not to be upset with God for this cross and not to wish Jacob was "normal". He's also had some GI troubles for a long time and we started him on a gluten-free diet on our own, which helped some. (I'm gluten-intolerant and my mom has celiac, so we knew that ran in the genes.) It is hard for me not to worry about the future, but the doctor says we can't tell what his IQ is and that is the key to how "normal" of a life he might have. Does anyone have advice for coping with these feelings? Also, does anyone else have a child with a pdd that has some days that are better and some that are really bad? My son was doing better about not putting things into his mouth but the last 2 weeks his oral fixation has been horrible - he's running into the kitchen to bite on bottle caps, canned food, towels. or even the rugs every 5 minutes. I'm going nuts. This is all so overwhelming.

Comment by Amylisa C on March 2, 2011 at 11:01am

Good morning, I have not posted in awhile but I am encouraged this morning reading what you all have to say.  Maria, my older son who is 18 now is named Joseph Paul also!

We've had a tough time lately with our youngest.  I am too tired right now to say much....actually he is home with a bad cold and 2 other kids are home today as well.  Everyone is in public school,  Joe graduates this June from a tech. high school.  I am thinking of homeschool beginning next year for my 12 year old daughter, she has asked if we could home school as middle school is very stressful for her emotionally.

God bless all of you and your families.

Comment by Maria-Helena Uribe on February 24, 2011 at 11:38am

Hi Claudia,

  My son also has developmental delays.  At 18 months old I don't think he was crawling much less walking.  I had so many frustrating and discouraging moments.  The Doctors don't want to believe that his delays could have been caused by his first doctors neglect of a deadly intestinal infection which gave him diarrhea for the first 8 months of his life or the fact that he had blood in his stool and was near death before I got my 3rd opinion!  So, we have been dealing with too many doctors/therapists/agencies telling me how to help my son...  to the point where my own mother's instinct started to fly out the window!  These have been a frustrating couple of years.  People ask me if my son will ever be "normal"... the answer is "I don't know"...  The geneticist and many other doctors have poked and prodded him, told me that he must have some sort of disease that I am not aware of, tested him and found NOTHING wrong with him... 

I too sometimes try to get "a glimpse into his future"...  I hope and pray that he will catch up to his peers and start talking and be able to mainstream by Kindergarten (He is currently in a special ed Pre-pre-K).  I don't know if this will happen...  so many of us Mom's want to protect our kids and have lost a sense of control because our children are not "normal" as the world sees "normal".  Like Amber, I often compare him to other children his age (or remember what his sister and brothers were like at this age) and I used to cry and be very sad and feel pity for us...  I still find myself making these comparisons, but I do not cry so much anymore.  I still trip out and how very baby he still is and looks, and that he is going to be 4 in about 6 weeks or so...

  Like Amber, I have found that prayer and extra Masses (whenever I can) have helped me through...  Asking for Anointing of the Sick before he goes into each of his surgeries helps give me a little peace while waiting for him to come out of surgery.

I think that God is trying to teach me patience and total trust in Him.  Sometimes I berate myself - feeling that I am unworthy and failing in the task...  but grateful to Him for entrusting me with it nonetheless.

Joseph Paul is an amazing child...  so happy and loving.  He has taught all of us so much about love and patience, kindness and understanding.  I have come to realize that I am truly grateful that he is not "normal"...  our lives would be so different had he never picked up that infection shortly after birth - not all in better ways.  If he were "normal", he would be terrorizing our household along with his 3 older brothers, roughhousing and breaking things along with the rest of them...  they would not have as much love and patience in their hearts for him if he were "normal"... they too have learned and LOVE him so very much!!!  Nowadays, I get teary-eyed from watching their interactions!!!  So beautiful!!!

I know where you are coming from... at 18 months old...  things were tougher... it's probably hard to take care of yourself or have time to yourself...  try to get help and take a relaxing bath or do something that you like to do...  PRAY...  recharge yourself and just LOVE this precious baby that God has entrusted to you!!

Comment by Amber Snipes on February 23, 2011 at 9:48pm

Claudia,

Yes, at times it can be discouraging.  I used to find myself comparing my son to other's his age and that is when I would cry and be very sad ~ poor me, angry with God.  In fact in the beginning I stopped going to church. 

But confession does wonders!  Thank the Lord for the Sacraments and our wonderful faith.  Remember discouragement does not come from God.  So fill yourself with hope from the Lord, especially in the Sacraments. 

In my reconversion, I attended as many Masses as possible and took my son with me.  It was a beautiful bonging experience as well as healing for us.  He was much quieter back then and I am so glad that I took him when I did.  We'd go 3-4days per week to Daily Mass.  Then all the old ladies would start to recognize us and ask how he was.  We formed a great church family and so many more people knew our struggle and prayed for our family.

If you can manage it, attend Mass together.  Pray the Rosary together, it always does wonders when I get frustrated, and I still do, to help with the healing and know that God loves all of us, just the way He made us!

 

Love,

amber

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